My start with Neurontin 300 MG, 600 MG and Baclofen 10MG

On the evening of April 1st I started taking 300 MG of Neurontin, it made me really sleepy that night. The next couple of days I noticed my hands didn't heat up as much or change colors as much but it seemed I was actually achier if that makes sense. By Thursday of that week my hands were back heating up at night though I noticed they weren't heating up as much during the day and the medicine wasn't making me as drowsy as it was when I first started taking it. My physician stated it might also help with the tingling but no luck there.

On the evening of April 8th I titrated up to 600 MG of Neurontin, it made me drowsy like it did when I first started it but that's all I noticed. The next morning I almost snatched a hole out of the wall with my forehead because I couldn't balance myself when I attempted to walk. I had to sit down twice and decide if I was going into work that morning or just work from home. I was at some point able to center my gait and make it to work. I took the medicine again that evening because I read the side effect was temporary, it was thankfully! The next morning I had the usual issues with balance, well maybe they were a little more intense but NOTHING like what I experienced the morning before. The pain in my limbs however seemed to continue. I wasn't sure if it was the Neurontin or not but I decided to start the Baclofen on April 13th instead of waiting until the 15th. 

On April 13th I started taking 10MG of Baclofen, the directions reads, "Take up to 3 times per day"  but I don't think I can take it at that level at this time. I took the Baclofen during the daytime hours but once I took the 600 MG of Neurontin I was a little bit spacy and extremely drowsy. 

Today, April 14th I took 20MG of Baclofen because my limbs have been aching like crazy, I also feel like I'm coming down with a cold but I've read that can be a side effect of the Neurontin... Umm, why am I taking that "ish" ("ish" means sh*t, crap or ca-ca) again? Why MAN, WHY?!

I titrate up to 900 MG of Neurontin tomorrow, I'll be back with an update. I'm not certain if it's a keeper but I've heard horror stories about Lyrica too so I'm damned if I do, damned if I don't it seems. Can I get some herbal medication? I'm just saying...

Be blessed in all you do.

One love, warm light 

Naltrexone and the FDA

Basically the FDA approved it for drug abusers... of course I don't know if this is a HIGH dose. Hmmm...
FDA approves injectable drug to treat opioid-dependent patients

The U.S. Food and Drug Administration today approved Vivitrol to treat and prevent relapse after patients with opioid dependence have undergone detoxification treatment.

Vivitrol is an extended-release formulation of naltrexone administered by intramuscular injection once a month. Naltrexone works to block opioid receptors in the brain. It blocks the effects of drugs like morphine, heroin, and other opioids. It was approved to treat alcohol dependence in 2006.

“Addiction is a serious problem in this country, and can have devastating effects on individuals who are drug-dependent, and on their family members and society,” said Janet Woodcock, M.D., director of FDA’s Center for Drug Evaluation and Research. “This drug approval represents a significant advancement in addiction treatment."

The safety and efficacy of Vivitrol were studied for six months, comparing Vivitrol treatment to placebo treatment in patients who had completed detoxification and who were no longer physically dependent on opioids. Patients treated with Vivitrol were more likely to stay in treatment and to refrain from using illicit drugs. Thirty-six percent of the Vivitrol-treated patients were able to stay in treatment for the full six months without using drugs, compared with 23 percent in the placebo group.

Patients must not have any opioids in their system when they start taking Vivitrol; otherwise, they may experience withdrawal symptoms from the opioids. Also, patients may be more sensitive to opioids while taking Vivitrol at the time their next scheduled dose is due. If they miss a dose or after treatment with Vivitrol has ended, patients can accidentally overdose if they restart opioid use.

Side effects experienced by those using Vivitrol included nausea, tiredness, headache, dizziness, vomiting, decreased appetite, painful joints, and muscle cramps. Other serious side effects included reactions at the site of the injection, which can be severe and may require surgical intervention, liver damage, allergic reactions such as hives, rashes, swelling of the face, pneumonia, depressed mood, suicide, suicidal thoughts, and suicidal behavior.

Vivitrol should be administered only by a health care provider as an intramuscular injection, using special administration needles that are provided with the product. Vivitrol should not be injected using any other needle. The recommended dosing regimen is once a month.

The prescribing information from the FDA is in this link -  http://www.accessdata.fda.gov/drugsatfda_docs/label/2010/021897s005s010lbl.pdf

Naltrexone helps MS and other diseases? Hmmm...

I read quite a bit about Naltrexone, I read the information on the FDA site first then realized they weren't referencing the "low dose Naltrexone" used for treating people with HIV/AIDS, etc. I found a site called "Lowdosenaltrexone.org", I will post a clip about what they state in reference to the use of this drug for treating numerous diseases but I will also post the link to the page so the entire site can be accessed. I will also post the FDA's link for information about the drug. I would post more about what they state but the Neurontin has me in sleepyville. LOL!

Here's a bit of info about some of the diseases the http://www.lowdosenaltrexone.org/#What_is_low_dose_naltrexone site states the drug can effectively improve -

What diseases has it been useful for and how effective is it?

> Bernard Bihari, MD, as well as other physicians and researchers, have described beneficial effects of LDN on a variety of diseases:

Cancers
Bladder Cancer
Breast Cancer
Carcinoid
Colon & Rectal Cancer
Glioblastoma
Liver Cancer
Lung Cancer (Non-Small Cell)
Lymphocytic Leukemia (chronic)
Lymphoma (Hodgkin's and Non-Hodgkin's)
Malignant Melanoma
Multiple Myeloma
Neuroblastoma
Ovarian Cancer
Pancreatic Cancer
Prostate Cancer (untreated)
Renal Cell Carcinoma
Throat Cancer
Uterine Cancer
Other Diseases
Common Colds (URI’s)
Emphysema (COPD)
HIV/AIDS
Autoimmune

Neurodegenerative:
ALS (Lou Gehrig's Disease)
Alzheimer's Disease
Autism Spectrum Disorders
Hereditary Spastic Paraparesis
Multiple Sclerosis (MS)
Parkinson's Disease
Primary Lateral Sclerosis (PLS)
Progressive Supranuclear Palsy
Transverse Myelitis

Other Autoimmune Diseases:
Ankylosing Spondylitis
Behcet's Disease
Celiac Disease
Chronic Fatigue Syndrome
CREST syndrome
Crohn's Disease
Dermatomyositis
Dystonia
Endometriosis
Fibromyalgia
Hashimoto’s Thyroiditis
Irritable Bowel Syndrome (IBS)
Myasthenia Gravis (MG)
Nephrotic Syndrome
Pemphigoid
Primary Biliary Cirrhosis
Psoriasis
Rheumatoid Arthritis
Sarcoidosis
Scleroderma
Sjogren’s Syndrome
Stiff Person Syndrome (SPS)
Systemic Lupus (SLE)
Ulcerative Colitis
Wegener's Granulomatosis

LDN has demonstrated efficacy in thousands of cases.

Cancer. As of mid-2004, Dr. Bihari reported having treated over 300 patients who had a cancer that had failed to respond to standard treatments. Of that group, some 50%, after four to six months treatment with LDN, began to demonstrate a halt in cancer growth and, of those, over one-third have shown objective signs of tumor shrinkage.

Autoimmune diseases. Within the group of patients who presented with an autoimmune disease (see above list), none have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there were some 400 in Dr. Bihari's practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.

HIV/AIDS. As of September 2003, Dr. Bihari had been treating 350 AIDS patients using LDN in conjunction with accepted AIDS therapies. Over the prior 7 years over 85% of these patients showed no detectable levels of the HIV virus — a much higher success rate than most current AIDS treatments, and with no significant side effects. It is also worth noting that many HIV/AIDS patients have been living symptom-free for years taking only LDN with no other medications.

Central Nervous System disorders. Anecdotal reports continue to be received concerning beneficial effects of LDN on the course of Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS—Lou Gehrig’s disease), and primary lateral sclerosis. Dr. Jaquelyn McCandless has found a very positive effect of LDN, in appropriately reduced dosage and applied as a transdermal cream, in children with autism.

> How is it possible that one medication can impact such a wide range of disorders?

The disorders listed above all share a particular feature: in all of them, the immune system plays a central role. Low blood levels of endorphins are generally present, contributing to the disease-associated immune deficiencies.

Research by others — on neuropeptide receptors expressed by various human tumors — has found opioid receptors in many types of cancer:

Brain tumors (both astrocytoma and glioblastoma)
Breast cancer
Endometrial cancer
Head and neck squamous cell carcinoma
Myeloid leukemia
Lung cancer (both small cell and non-small cell)
Neuroblastoma and others...
These findings suggest the possibility for a beneficial LDN effect in a wide variety of common cancers.

The Low Dose Naltrexone Homepage

Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone...

LOWDOSENALTREXONE.ORG

"The Woman Who Cured Multiple Sclerosis" - Shared Article

Happy Monday beautiful Spirits! I'm behind on my post, I apologize but life...  I stumbled across it while doing some reading, "The Woman Who Cured Multiple Sclerosis" and thought I'd share the article.
I am not in any shape, form or fashion advocating the use of Naltrexone but I wanted to share the story for any who are interested.
Of course I will do some additional reading on Naltrexone and I will post what I find about out about the drug. I posted the article below... <3

The Woman Who Cured Multiple Sclerosis

 In 1998 Kristen was 27 years old. She was a triathlete, a mountain biker, a skier and a surgical scrub tech. She was visiting her parents when an emergency trip to the hospital ended with a diagnosis of Multiple Sclerosis. For over five years she attempted to cope with the intermittent and debilitating symptoms (exacerbation) of this disease —  then she got pregnant. With a new baby on the way Kristen was determined her MS would no longer be a part of her life. She has now been cured of MS for 8 years.

  Here is a bit of her story.

 When you have the whole world telling you there is no cure for Multiple Sclerosis what made you think you could cure it?

  I don’t know if I thought I could cure it. I thought, ‘This is a big intrusion on my life and I am not willing to have it.’

 When you had Multiple Sclerosis what were some of the most severe exacerbations?

 My worst outcome of an exacerbation was losing sight in my left eye. There were two other times I was unable to walk. There was another exacerbation where I was completely paralyzed on the left side. It is hard to pick which was the worst.

 What does Multiple Sclerosis do to your body?

 Think of your nerves as an electrical cable. If you dropped acid on that cable, it will burn a hole in it. This is what MS does to your nerves. Then it covers those nerves with a plaque so the nerves can no longer fire from point A to point B or they fire intermittently. There are two kinds of Multiple Sclerosis. There is Remitting Relapsing Multiple Sclerosis which is what I had and then there is Progressive Multiple Sclerosis. Remitting Relapsing MS means you go for times without any flare ups, which are also called exacerbations. Progressive MS means you are on a progressive downward spiral to a wheelchair.

How do you know for sure you are cured?

 I don’t take any medications for MS. I had eight lesions to start with and have two now that showed up on the last scan about five years ago, but they are smaller. I have been symptom free for 8 years. I don’t even want to say symptom free because my doctor is like, ‘You are fine. Go away.’

 How did you react to being diagnosed with Multiple Sclerosis?

 When the doctor told me that I had MS he also told me that I was going to have to be in the hospital for a little bit. I wanted to know when I could go skiing. He told me that he did not think that I understood what he was telling me. I told him that I work in medicine and that I understood. I just wanted to when I could go back skiing. He told me he didn’t know if I could go back skiing and I said, ‘That is not good enough.’

 While I was in the hospital room I would do pushups at the end of the bed. They were not happy with me for climbing over the bed rails to do them. I would call Physical Therapy and ask them to bring sandbags so I could do weights. I would do stretches on the window sill. This was not going to define me. It just wasn’t. I was like, ‘Ok I have been dealt this card, but I am not ready to fold just yet.’ All through the years of dealing with Multiple Sclerosis I had friends say, ‘You are such an inspiration.’ I would say, ‘What is the alternative? Give up and sit on the couch the rest of my life.’

 What were others reactions when you go from a triathlete to having Multiple Sclerosis?

 I really credit my support network [for my healing] because I had these days where I just wanted to lay in bed and cry. And on these days I had friends who are like, ‘You need groceries. Let’s go to the grocery store.’

 We would be at the store and I would say, ‘I need that can.’ And they would say, ‘You need to get it yourself.’ Then I would drop it because I did not have the neurological tactile sense to pick things up and people [in the store] would stare at me. I would tell my friends, ‘People are staring at me.’ And they would say, ‘Too bad.’ That was kind of how we went about it. It was like ‘suck it up’ and that is what I did.

 How did you get to the point where you are now cured of Multiple Sclerosis?

 I took an off label drug, Naltrexone. Doctors have been using Naltrexone since the 80s with AIDs patients and other autoimmune diseases. A friend of the original doctor I went to used Naltrexone for MS. Every time she went off the Naltrexone she would inevitably have another exacerbation. The difference between her and me is that I did not think the drug would fix everything. I changed my life, so that eventually I could get off of Naltrexone as well.

 What other life changes did you make to cure your MS?

 I started yoga when I was diagnosed. In the early years of this disease, I always noticed that when I slacked off of my yoga I would get worse or get sick. There are times in my life when I slacked off really badly with my yoga and then my life was in and out of hospitals.

 I also did Reiki. I started to learn how to move energy through my body. I learned how to really focus on places in my brain that had plaque. I learned how to pass energy, how to pass good white light energy through my brain to help heal it. People think this is crazy, but it worked for me. That is all I can say.

 How did you learn about Naltrexone?

 A physician I worked for told me his niece had MS and that I should look into it. I researched it until the ends of the earth. At the time there was very little information about it, but I learned it didn’t have any side effects. The Multiple Sclerosis drugs, Avonex, Betaserone, and Copaxone, I was taking were all chemo based drugs and they would cause me to have convulsions, vomiting and sweats. I would have aches and pains for up to 48 hours after injecting this poison and I wasn’t getting better. I was having exacerbations on a regular basis [while taking the traditional MS drugs].

 What are the traditional Multiple Sclerosis drugs supposed to do for you?

 When I was taking the Avonex, Betaserone, and Copaxone I was not getting better. I was barely staying at status quo and every week I had to take 24 – 48 hours out of my life because I was so incredibly sick from the drugs.

 I’ve read that there are a lot of people that have taken Naltrexone that have done exceptionally well. They have done clinical studies in the last 10 – 12 years. There is research out there proving the effectiveness of it. People poo-poo the research because it was not done in the US or the sample size is not big enough. My first doctor in Colorado poo-poo’d it because he said there was not enough research. Naltrexone is $30 a bottle. The traditional Multiple Sclerosis drugs were $1000 a month, $250 per shot — for poison. I took Naltrexone all through my pregnancy because they deemed it completely safe. There is no money in a cure for Multiple Sclerosis.

What was your diet like before you were diagnosed with Multiple Sclerosis?

 I was a probably a borderline alcoholic. I partied. I smoked occasionally. I ate whatever was in front of me. I started doing triathlons when I was in my mid-20s. I thought I was exercising two hours a day and it did not matter what I put in my body.

 What is your diet now?

 I am not perfect, but I am much more conscious of it. My diet is mostly organic. We cut out most red meat. We do not eat processed foods. Early last year I cut out gluten. I do a lot of coconut milk and a lot of soy. Does that mean that at a barbeque I absolutely won’t throw down a burger? No. It is all balance and moderation.

 Do you eat dairy?

 I do, but I am very conscious of whether it is organic and whether or not it has rBGH.

 What about other people who have been treated their Multiple Sclerosis as you have?

 I met a woman in Denver who runs an organic granola company and she said that she cut out gluten and started doing yoga and she does not have MS symptoms anymore. You do hear of it.

Were there ever any times you just wanted to give up?

 It was all I was known for, ‘I was Kristen with MS.’ ‘Oh, that is Kristen with MS.’ I was no longer Kristen the triathlete, Kristen the mountain biker or someone’s girlfriend or wife. All of the sudden I had no other identity but MS. When I woke up in the morning it was all I could think about and when I went to bed it was all I would think about – I had to break that or I was never going to get better.

 There were days when I thought, ‘This is my life. This sucks. What did I do to deserve this? What did I freaking do to deserve this??!’ But then I had to be, ‘Enough with the pity party – move on.’ I know in talking to people with similar illnesses or stories at some point you come to a blockade in the road where you decide this disease is going to define me or this is disease is not going to define me.

It seems like a heroic effort on your behalf – to have the whole world say, ‘You are Kristen with Multiple Sclerosis.’ And for you to say, ‘Screw you.’

 I think for awhile I did buy into, ‘I am Kristen. I have MS. My whole life revolves around doctors and drugs and people and their pity faces.’ I think for awhile, for that really bad first five years or so, I did buy into it and then I got pregnant and my focus shifted. It was no longer about me. I had another purpose. My purpose was to be a better person for this child.

 What were the major life changes you made after you were pregnant?

 You may take for granted your own body, but you are not going to poison your baby. Like I said, I fell off the band wagon with yoga and healthy eating a few times in the first five years or so after I was diagnosed, but now I was pregnant and it was time to get back on that band wagon and stay on it.

 How do people react when they learn you cured yourself of MS?

 It depends on the audience. With close friends, they are amazed. Then there are other people, the nay-sayers, the ones that are like, ‘Maybe you were misdiagnosed’ or ‘Maybe you have it and you don’t know it.’ There are so many people in the Denver Medical Community that knew me and see me now and always say, ‘I just can’t believe it.’ The response is mixed based on the audience. Some people think Eastern Medicine is silly and they just don’t want to hear it. You are not going to change anyone’s mind.

 What is it like working in Western Medicine knowing that Eastern Medicine transformed your life?

 I get a lot of flack about it and I get harassed about it a lot. I am building a yoga practice and if I can build it enough I would be happy to exit medicine. I work in surgery so what we do has it place, but I have gotten out of the habit of going to doctors for every little complaint because they are just not open to listening to a lot of what you have to say regarding what you know about your own body, especially if you relate it to Eastern medicine. They want to prescribe a drug and get the next patient in. There is not a lot of listening in Western Medicine anymore.

 I just can’t believe there are not more western doctors out there that are like, ‘This is crap.’

 I think they are out there, but I think they are hard to find. You can’t poo-poo all of Western Medicine. You just do not see doctors who are trying to find a compromise between Eastern and Western medicine.

 This is why I like the neurologist that I ended up with. The name of his practice was, Peace of Mind Neurology. He promoted yoga and he promoted Eastern Medicine. I absolutely adore him because he is one of those people that will say, ‘I don’t think we are doing this right. I do think there are other ways we could be doing this.’

 Do you have advice for someone who was recently diagnosed with Multiple Sclerosis?

 I would tell them to stay away from the other drugs. I would tell them to not do them at all. Try nutrition. Try Ayurvedic Medicine. Do as much yoga as you can. Try whatever you can before you turn to the other drugs.

 How are you different because you have gone through this?

 I don’t take my body for granted. I have learned that the human body wants to heal itself, but sometimes you have to respect it and help it to get there. I also have a really low tolerance for whiners. I hate to be like that, but I want people to help themselves. I want people to be their own

  advocate. I teach this to my daughter. I tell her she cannot let other people determine who she is. I will define who I am going to be.

 Is there anything else you would like to add?

 I could talk for hours about this. I think about people diagnosed with cancer and I just keep thinking, ‘You go to the doctor and they pump you full of more toxins. They destroy any healthy antibody you may have while they are claiming to make this better for you.’ This is what we are taught to believe. That this type of treatment is the only answer. What is going to cure you of cancer and other diseases is watching what you are putting in your mouth.

 I do not trust our food system. We are eating toxins. We are rubbing toxins all over our body. We live in toxins. People say there is no cure for cancer, but there is. There are studies. If you eat a vegan diet there is a cure for cancer, but nobody wants to do that. It is against the norm. It is too much work. It doesn’t go along with what you have been told. It doesn’t go with the propaganda we hear. But, it can be done if you take the time and effort to do it yourself.

 ……………..

   This was originally printed on thedeliciousday.com along with other stories of how people have cured themselves of diseases Western Medicine claims are not curable.

Source: Medium.com

Oh I Think I Like Her but I Wish She Hadn't Said That! Neurontin and Lioresal (Baclofen)

Greetings beautiful spirits!
Today is April 1st aka April Fool's Day and I saw my new family doctor whose name is April! How cute is that?! Yeah so I think it's cute. Bleh!

Moving right along, as some of you have read I have been in pain since my journey began and no one seemed to give a flying freaking duck about it. I did try a couple of homeopathic remedies but I was still in pain like "what the h*** man?"
I'm not really into "the man's drugs" aka prescription medications but *In my best R. Kelly voice* "My mind was telling me NO but my body, my body was telling YES!" so I took those GOOD drugs Ms. April prescribed me today with a SMILE!  I really like my new physician, not because of the drugs but because she LISTENED to me and took the time to converse with me about my disease. She also said she would do what she could to help me find a new neurologist who is a better fit for me. Yay! :)
On a not so high note, the mention of my having Systemic Lupus has come up again. This isn't the first time this has come up and it makes me a bit uneasy because I know there is a possibility to be diagnosed with both diseases. The problem is Lupus mimics other diseases and MS can also mimic other diseases. I had a positive Lupus test but no one revisited the Lupus after the last neurologist. He said he was going to run another test but I never heard anything back because everything was focused on the MS. A lot of my other symptoms mimic SLE symptoms so I've had a couple of physicians question the possibility of both diseases being present.




I asked for Lyme Disease man! I got MS now they're back with more foolery. I REFUSE! LOL! I'll take conjunctivitis for $500 Alex!
My MS just has some Lupus tendencies. ;)

Meanwhile back at the ranch...

She prescribed me Neurontin - Gabapentin is an anti-epileptic used to control some types of seizures in epilepsy. It is used in multiple sclerosis to control dysesthesias (pain caused by MS lesions) and the pain caused by spasticity.

She also prescribed Lioresal (Baclofen) - Baclofen acts on the central nervous system to relieve spasms, cramping, and tightness of muscles caused by spasticity in multiple sclerosis.People with MS are usually started on an initial dose of 5 mg every six to eight hours. If necessary, the amount is increased by 5 mg per dose every five days until symptoms improve. The goal of treatment is to find a dosage level that relieves spasticity without causing excessive weakness or fatigue. The effective dose may vary from 15 mg to 160 mg per day or more.
I started the Neurontin tonight because she said it might help with my hands turning into a personal furnace (especially at bedtime). They're red right now but they aren't as hot but that doesn't mean anything because my symptoms vary. It's also supposed to help with pain, I'm not feeling much of a difference I'm just sleepy but it's just night #1. I'm going to keep hope alive plus I read in one of the forums tonight the combination of both meds together tends to work better.
I'll keep you posted on how the meds work out for me or don't. I still haven't received the Copaxone yet... *Le sigh*
I'm going to write about my Solu-Medrol experience soon but alas I must retire, this stuff makes me sleepy.
I hope everyone created a beautiful day, did something new or at least shared a smile. I'm sending hugs out into the universe. Dream sweet.

One love, warm light

~N 

Oh No She DIDN'T! And HER too!

Greetings beautiful spirits!
I've been having some technical difficulties as I like to term my MS symptoms. My hands have been like a box of crayola crayons and my body has been a playground for pain.
Spasticity in my arms and legs have held me hostage after work. I have been packing a little each day (I'm moving soon) and just trying to keep up with being a mother to my son.
I admit there are days when I just want to take a shower and go straight to bed but I don't, I do everything that is expected of me to the best of my abilities and I push through the discomfort. I don't feel I should sugar coat my post and give people who do not have a chronic illness the impression we don't have pain or don't have tough days because we DO! It's all about how a person chooses to handle their day or how much a person chooses to divulge to others. I personally have never been big on sharing much when it comes to pain and discomfort, I just work through it as much as I can. I might mention it to someone I'm extremely comfortable with but even then I won't discuss it often.
What I CAN tell you bothers me is some of the comments I get from people in reference to MS.
One of my coworkers kept saying "She looks good to have MS. I mean she doesn't look sick at all." -Blank Stare-
Another coworker asked me if I was cold today, and I said yes. She said, "I'm not cold, you must have low blood". I said, "No, I have MS". She said, "Oh please, you have low blood. My cousin has MS and she's not cold all of the time." *Please insert my side "I could have punched her in the eye" eye here* I took a deep breath and I said, "Everyone with MS is different, I'm not your cousin so please don't say things like that". She said, "Well, I'm just saying I know someone else with MS and they aren't cold. What do you want me to do, baby you? There's nothing wrong with you, you're alright". I surprisingly didn't curse this lady out, instead I said, "I never asked you to baby me, what I would LIKE for you to do is to respect me, stop trying to diagnose me with low blood and stop comparing me to your family member as well as your friend. As I stated, everyone who has MS is different". She replied, "Well I can't diagnose you, you've already been diagnosed, I was just saying...". I looked at her and said, "I like your jacket, it's nice".  Sometimes you have to CHOOSE to be the bigger person and just let it go. Phew!
I WILL either create a post of things you shouldn't say to THIS person with MS or a video. Tell which one you think would be more entertaining. See, I'm nice I didn't even call her a bat-a-lac but I wanted toooooooooo! LOL!

One love, warm light

Who in THEE H*LL Left The Gate Open?!

I know I haven't posted in a few days but I had some technical difficulties, in this instance that means my MS has been acting a straight DONKEY! So anyway, I arrive home a couple of days ago, gather my mail when I see an envelope from the hospital that performed my spinal tap. I immediately hold my breath (Anyone with MS or any chronic illness can relate to this "Oh my damn" feeling when they see yet ANOTHER bill from a provider) because I wasn't expecting anything from these people. I thought to myself maybe they didn't charge me the correct amount when they told me I had to pay a portion up front. I figured they might have been off by $20 or $30. I opened the envelope and saw a bill for...

I know, I know, you're thinking what I was thinking!

So after I fainted (Kidding) I was totally confused and trying to figure out how in the world I ended up with an almost $2,600 balance left over after my spinal tap when I have insurance. I already had a bad headache and this was NOT helping. I logged into the website, pulled up my EOB's and read the bottom message which stated the provider neglected to request an authorization for services.
I was hot like fish grease! I called my insurance company and had a chat with one of the reps. I requested she contact the provider and notify them of the physician's office error. In other words, I'm not paying you sh**!
Why was I so hot? This is the SAME physician's office that neglected to call in my prescription for my MS medication. I called them to inquire about it and they gave me a number to call. When I spoke with the rep they informed me it had never been requested. This is the SAME office that over charged me for a co-pay, told me I owed them for previous services they didn't charge me for on the day the services were performed but COULD remember to send me TWO copies of the same bill! You can bill me but you can't call in my meds, you can't call in my auth and you can't get my copay correct... guess who still does NOT have her medication? See her face below!
  

Yeah, this is the face you get when you mess with my health, my family, my friends or my money! 

See the CRAZY eye? Yeah, the right one I still can't see clearly out of... I will use all 75% of the vision I have in it to write a concise review about my experience with this practice, I WILL tell ALL. Oh by the way, people ask me quite frequently to recommend a physician and guess what else? I work in the health industry! Word spreads fast...

I finally got to vent about that and I feel better! I didn't even talk about the other two practices... *Le sigh*
At the end of it all it's really sad I felt from the first time I went the provider's office in this particular situation I was treated by the provider as though I wasn't really relevant and the actions of his staff seems to follow suit. I do understand people making mistakes but this is just carelessness. I have yet to receive a phone call with an apology for the neglect with the ordering of my medication and by the way I forgot to mention, when we discussed this new medication I specifically stated I needed something that would help with my symptoms (pain specifically). He prescribed me a medication that does absolutely NOTHING for your symptoms, it helps delay your relapse. Who in THEE H*LL left the gate open? LOL!

On a high note, I completed my "Pay it Forward" list from 2013, one person shared his candy bars with me today (I don't eat candy often but I was happy he offered because I just needed it today for some odd reason), another gave me a container of hummus and sent me a very sweet text message. There are sweet little blessings everywhere and those kind acts made me smile. :)

Be blessed in all you do and keep your heads up, there's always light even on cloudy days.
Create a beautiful evening and remember to SMILE!

One love, warm light

My Vision Loss and what it looked like to me...

Hello lovely spirits! I hope everyone had a great day! I know I said I would post about the connection between magnesium and MS but I remembered this really cool site I found when I lost the vision in my right eye and I wanted to share it with you. There is a slide that depicts what I "saw". The slide named "Nocturnal Visual Snow" or White Visual Snow at Night is the one that is fairly accurate to my vision loss. My vision has been restored to about 75% so I won't complain but I will probably be sent for more IV treatments since that's all I've gotten back. I'll tell you about that soon... let's just say, it doesn't agree with me. Anyway, the site is really neat!
Visual Snow Gallery

Low Vitamin D Levels Linked To More Severe Multiple Sclerosis Symptoms

I was reading as I usually am and I saw this article about MS patients with lower Vitamin D levels having more severe MS symptoms. Interesting...
I personally was told to up my supplement to 5,000 IU's. I'm curious about how much Vitamin D other MS patients are taking and what their levels were on their last lab test. I don't know what the very last lab results showed but the second lab test showed my level dropped to 16.9 from 21 even though I was taking 500 IU's of Vitamin D as prescribed. I can't say the additional Vitamin D has helped but I can't say it hurt either. I was reading they believe there is a link to low Vitamin D levels and MS. Well, I ran across an article that states magnesium deficiencies are related to MS. FASCINATING since I've suffered with both! The magnesium however was for a very short period of time, like one month. I've struggled more with my potassium.
Hmmm.... Low Vitamin D Levels Linked To More Severe Multiple Sclerosis Symptoms

Be blessed in all you do and remember to smile!

My Lovely Time with Raynaud's Phenomenom

As I stated, I suffer from Raynaud's Phenomenom but I should have also shared when my hands swell and get hot that is Erythromelalgia. I shared a pic with you all in an earlier post but as you can see it happens A LOT so I have PLENTY! As stated, below is I've given you some information on what Raynaud's is with some additional pics of my hands, I left my Fred Flinstone feet out of the collection.

What is Raynaud's Phenomenom (Syndrome)? *My super powers* Kidding!

Raynaud’s phenomenon occurs when the blood vessels that feed your fingers and toes constrict in reaction to cold or emotional stress (this event is called a vasospastic attack). Diverting blood flow away from the extremities to keep the body’s core warm is a normal reaction to extreme cold. However, in Raynaud’s phenomenon, the body reduces blood flow to the fingers and toes under relatively minor cold stress, such as holding a glass of ice water or being in an air-conditioned room. The same reaction can be triggered by emotional strain or excitement.

Raynaud’s phenomenon can occur on its own (called primary disease) or it can occur in the presence of another underlying disorder (called secondary disease), usually a connective tissue disease, such as lupus or scleroderma. Most people with Raynaud’s have the milder, primary form. Secondary Raynaud’s phenomenon is not as common as the primary form, but it is often more complex and severe.

What are the effects?
The symptoms of Raynaud’s phenomenon can include:

Extreme sensitivity to cold
Body reacts to emotional stress as if it were reacting to cold
Skin color changes: Fingers and/or toes (and sometimes ears, lips, nose) turn white due to lack of blood flow (called pallor). The blood that’s left in the tissues loses its oxygen and the fingers turn blue (called cyanosis). Finally, the skin will turn red (called rubor) as fresh oxygenated blood returns to the fingers once the vessels open.
Coldness, pain and numbness: A lack of oxygenated blood in the fingers triggers feelings of coldness, pain and numbness – the sensation that the hands fingers have fallen asleep.
Warmth, tingling and throbbing: The quick return of blood to the fingers triggers feelings of warmth, tingling and throbbing, like when your hands “wake up” again.
Skin ulcers: If your Raynaud’s phenomenon is severe and your attacks tend to last a long time, you may get painful, slow-healing sores on the tips of your fingers.
Gangrene: In rare cases, a long-term lack of oxygen to the tissues can result in gangrene and amputation of the affected digit.

Who Gets Raynaud’s Phenomenon?
People of all ages can have Raynaud’s phenomenon. Raynaud’s phenomenon may run in families, but more research is needed.

The primary form is the most common. It most often starts between age 15 and 25. It is most common in:

Women
People living in cold places.

The secondary form tends to start after age 35 to 40. It is most common in people with connective tissue diseases, such as scleroderma, Sjögren’s syndrome, and lupus. Other possible causes include:

Carpal tunnel syndrome, which affects nerves in the wrists
Blood vessel disease
Some medicines used to treat high blood pressure, migraines, or cancer
Some over-the-counter cold medicines
Some narcotics.
People with certain jobs may be more likely to get the secondary form:

Workers who are around certain chemicals
People who use tools that vibrate, such as a jackhammer.

How is it diagnosed?
Your primary care doctor can usually determine if you have Raynaud’s phenomenon simply by listening to you describe an attack. Determining whether the disorder is primary or secondary to an underlying disease may take some time and testing, however.

What are the treatment options?
For most people with Raynaud’s phenomenon, a conservative approach not using medicines is sufficient to control attacks. For people with more severe attacks, medications can be added.

To shorten the length of an attack once it has started, try these tips:

Warm your hands or feet in warm (not hot) water.
Swing your arms in large circles to increase circulation.
Use relaxation techniques, such as deep breathing or meditation.
Avoid air conditioning.
Wear gloves to touch frozen or cold foods.
Wear many layers of loose clothing and a hat when it’s cold.
Use chemical warmers, such as small heating pouches that can be placed in pockets, mittens, boots, or shoes.
Talk to your doctor before exercising outside in cold weather.
Don’t smoke.
Avoid medicines that make symptoms worse.
Control stress.
Exercise regularly.

Source - niams.nih.gov

I get an array of color configurations, sometimes three fingertips, two, one...

The Raynaud's actually hurts REALLY bad! Well for me it does when it's cold outside. Sometimes the last three fingers lose feeling.

Grocery store, they couldn't decide if they wanted to go with Raynaud's or Erythromelalgia. LOL!

"You're Going to Stick that Where?" "Spinal Taps, EMG, NCV's and Me!"

Final diagnosis...
My EMG and NCV was scheduled for 2/24 but the lady from my neurologist's office called me on 2/18 to tell me they scheduled my lumbar puncture aka spinal tap for 2/20. I was like, "Huh?" because although I'm unafraid of needles, I'm not about that telling me at the last minute you're going to stick a needle in my back life.
●2/20 A dear friend of mine takes me to the hospital but she is afraid of needles so she exits stage left. LOL!
They put me in a room and I wait for what felt like ever but was actually about one to one and one half hour before they take me in for the spinal tap.
I am rolled into an X-Ray room (I considered myself fortunate because it was being done via X-Ray instead of blind but umm...) where I waited again
My tech and the lady doing the procedure are both named Erin *stare* so I will call them Erin1 and Erin2.
Erin1 the tech preps me by telling me about the procedure but I had already watched it on Youtube! Ja, ja, ja!
Erin2 comes in and tells me again! I tell them I'm cool as long as I can watch.
Erin1 says they don't typically get that request but in my mind it's mandatory, I don't like being stuck with needles when I can't see what the person is doing.
Erin2 washes my back with Betadine, then tells me to prepare for a bee sting as she inserts the lidocaine. It didn't really hurt, actually a bee sting hurt a little worse to me.
She then immediately begins inserting the needle, I 'm watching, I felt pressure at first and thought, "Okay this isn't so bad" but then I felt it in my pelvic area... (*O*) She tells me it might touch a nerve and I might feel a jolt in my leg. As she is talking she hit the spinal nerve and bay-bay it was on like popcorn! Erin2 would have caught a Tyson hook but I "sway fo' Gawd" I felt like I was fading to black in that moment! Once I returned from my visit with Rod Serling (Please Google Rod Serling and Twliight Zone if you're lost) I hear Erin2 say, "If the needle hits against your nerve again let me know and I'll re-adjust it". In my head I thought, "The hell you will, keep going sista I want off of this table!". This lady fills like 6-7 long vials and finally says, "We're finished". Trust, I paid for not telling her to re-adjust the needle. Skipping the extras let me say this, a spinal tap can be a real trip! I ended up with a 6 day spinal headache! Not due to the needle not being re-adjusted, it happens if fluid is still leaking. It felt like someone was trying to remove my brain from my head through the back of my neck. I suffered with spasms in my back, pelvis and left leg. OUCH!
●2/24 I go for my EMG and NCV procedures as described below
The EMG - A needle electrode that is attached by wires to a recording machine is inserted into a muscle. An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals.
So yeah, after he stuck needles into me around the 14th or 15th time it really didn't matter anymore, I was with Rod again! LOL!
The NCV - Patches called surface electrodes, similar to those used for ECG, are placed on the skin over nerves at various locations. Each patch gives off a very mild electrical impulse, which stimulates the nerve. <--- Mild my ASS! If feeling like you've been hit by a small bolt of lightening is mild, then hell yeah it's mild! LOL! A Nerve conduction velocity (NCV) is a test to see how fast electrical signals move through a nerve. The NCV was uncomfortable (I mean who likes getting shocked) but it was tolerable.
I left with my spinal headache and spasms in tow and waited for my results.
My neuro instructed me to call them Friday if they hadn't called me by then. I called them twice on 2/28 but they didn't call me back.

Monday 3/3 I received a call from one of the ladies on staff in my neurologist's office and she was kind of like, "Hey, sorry we didn't call you back Friday but we have the results of your spinal and yeah it looks like you definitely have MS. He needs you to come in on Wednesday to discuss your treatment". *Insert my cursing in Spanish face here* I was annoyed because she should have called me back Friday (she had an attitude on Friday like I was bothering her) and she was very unprofessional but I was happy my wiggle room for doubt was finally removed.

Ohhh and I forgot, my neurologist sent me to have my eye treated to attempt restoration of my vision. He explained having the treatments could possibly keep me from having my vision affected again in the future. Remember Dr. I'm Going To Let Your Eye Heal On It's Own? He had the damn nerve to send me a bill! All he can get is that right hook I promised his right eye. <---- I digress
I wouldn't really do that but it felt good to type it! LOL!

So now you know my journey! Well SOME of it! I will be posting facts and different types of literature now but I wanted to talk about my journey in case there are others out there going through this, plus it is for my friends and family who wondered where I was or what happened to me. If you are displaying symptoms please know you are NOT alone! Again, I had symptoms before all of this but that's like a novel, I won't go there. LOL! I love you all and thank you for being so patient. Feel free to ask questions, I will answer to my best ability. Yes, my memory has been affected but that's why I started documenting EVERYTHING! DOCUMENT, DOCUMENT, DOCUMENT!
One light. 

Lumbar Puncture day before and after. I cried before I got dressed to leave. The nurse caught me crying, felt so bad for me she gave me a shot of Demerol right before I left instead of making me wait. 
That's not MY back below, just showing how the procedure goes. 
Lumbar Puncture Photo courtesy of Google

1. Lumbar Puncture Procedure for MS. 2. Test Results for MS 3. Spinal Needle 4. Spinal Needles

Photos Courtesy of Google

Photo 1. NCV 
Photo 2. EMG (Needle Test)
Photo 3. EMC and NCV

"You can't wiiiiin!" "At Least You Have A Brain!"

Diagnosis Journey Continued... (One more after this)
Though I'm now into the first week of January I have exhibited the following additional symptoms that started sometime in December and continued on until present.
●Recap - My MRI showed lesions and matter consistent with a probable MS diagnosis
●My Chest X-Ray came back negative for Sarcoidosis and my chest isn't that flat, it's an image! I do still have a little 'breasteses' people! I feel like I should be getting tipped with all of my "goodies" up for view but anyway...
●I have a gang of MRI PICS but why does my eye look like that? I know I have optic neuritis but they could have done a little bit of touch up work on it or something, dayuuum! I look like Predator.
●My Systemic Lupus Test showed inflammation which means nothing at this point
Oh yeah, those ELECTRICAL SHOCKS are called Lhermitte's Sign. I'll break that one down for you a little later as well.
●Symptoms - Legs stiffen in the cold, body aches when outside in the cold
●Hands, feet and ears hurt really bad when cold (My ears are random, hands and feet ALWAYS), I notice the Raynaud's Phenomenom. (I will post about this a little further along)
●Feet cannot tolerate water temp past cool or they feel like they’re on fire
●Pin pricks, I feel like I’m being stuck with pins or someone is pulling the hairs out of my skin
●In Dec a vein in my leg became lumpy, my knees became swollen and I had red blotches
●I had back pain
●I would dream about pain, wake up and it would be real (arms, legs, neck or shoulders)
●Neck area is usually achy, like always hurts!
●Unbalanced when I first wake up in the morning (This started in Nov)
●Dry eyes that ache
●Headaches on the top of my head, like my scalp 
I'm attempting to survive the cold temps as I wait to see the neurologist on 2/11 but the snow days are kicking my ENTIRE ARSE! One day I arrived at my place of employment, the cold slowed me up as usual, I mean I'm walking like the tin man from the Whiz... I finally made into the building only to realize (When I see the BIG sign saying, "DO NOT ENTER") I entered the gym side and we can no longer access the rest of the building from there! Who in the hell left the gate open?! I have to go BACK out into the cold and walk to the main entrance. I kind of laughed at myself because all I could hear is MJ singing "You can't Wiiiiin" http://youtu.be/6YrinCQOxB0. I exited the area, made it to the front entrance, did the robot all of the way to the elevator. SMDH
●2/11 I go to see the new neurologist
Oh what a joy he was! *Blank 'REDRUM' <---If you've never watched the Shining, never mind) stare*
He was the rudest thing I had ever met but I waited over one month to see him so I sucked it up and smiled as much as I could until he told me he looked at my films (my MRI) and no offense but he wasn't impressed. Then proceeded to tell me at least I have a brain. *Station break while I channel my deceased grandmother, the Panamanian one who might still know some Santeria which will allow me to turn this man's head into the same size of his penis* I would have walked out but I had waited too long and driven in the ice and snow for his foolery so there I was stuck! Ultimately he decides to order a lumbar puncture, an EMG and a NCV. An EMG is where they insert needles through your skin to test your muscle activity and the NCV is done with electrodes to test your nerves. We of course know what a lumbar puncture is. Jesus be a Trojan Horse! That's all I could think...
To be continued...

My MRI, white matter, lesions

I have a gang of MRI PICS but why does my eye look like that? I know I have optic neuritis but they could have done a little bit of touch up work on it or something, dayuuum! I look like Predator.
My poor right eye.

My Chest X-Ray came back negative for Sarcoidosis and my chest isn't that flat, it's an image! I do still have a little 'breasteses'... wait are my boobs sagging in the damn X-Ray? Now that's some B.S. LOL!