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!

Snap, Crackle, Pop! OUCH!!!

Diagnosis journey continued (we're almost there)
●December 10th I went to Palmetto Imaging for my MRI with and without contrast, they also took my chest X-Rays
My fingers lost feeling during the MRI, the tech asked me if that happens often and I thought "Uh oh".
My body is a tingling factory but the aches move around from limb to limb. The headaches are now random and a lot more seldom but the incontinence is crazy! Constipation set in as well with the wonderful month of December! Considering I eat veggies, juice and haven't touched a land animal in 8 years you can imagine my reaction. 
●Oh I forgot to mention back around the first weekend into December I slept for about 10 hrs. I am a TRUE insomniac, I have been for years and the MS made it worse so I was confused by all of this. The crazy part is I still felt exhausted afterwards. This continued for about two weeks, I would wake up during these long bouts of sleep but I would feel exhausted no matter how long I slept. 
I also forgot to mention my Vitamin D levels dropped AGAIN! I was still taking the 500 IU but it dropped to 16.9 so he upped it to 5000 IU per day. Watch that Vitamin D ladies and gentlemen!
●12/13 I'm reading on my bed and what felt like a bolt of electricity shocked my left hand! I said some words I won't repeat here but just know it would take a load of soap to wash my mouth out. That sh*t hurt SO BAD! Like how does your body electrocute itself? WTH yo?! It happened again a few minutes later and I was looking like Pookie in New Jack City (Please search Google for Pookie in New Jack City for your reference).
●12/14 I received a call asking if I could stop by for my test results. I knew something was up because I gave them permission to give me my results over the phone so I figured MS or Sarcoidosis. 
I went in to speak with the doctor who said BROWN people like me typically don't get MS only to be told the results of my scan are consistent with MS. I wish this were the end but it isn't. He said I had optic neuritis in my right eye, they could see a lot of fluid around my eye which made sense because I could feel it. He said he was sending me to ANOTHER ophthalmologist neurologist to treat my eye with IV steroids for most likely three days. -Sigh-
●12/26 I went to see the doctor who was SUPPOSED to treat my eye, he informs me he feels it has shown slight improvement since my last exam and has decided NOT to treat my eye but to allow it to heal on its own. "Say what?!" Now I'm thinking I should punch him in his right eye and we can both be left eye together...
He proceeds to tell me he doesn't know anything about my case, flips through my chart, ask me a couple of questions and finally says, "I think your immune system is attacking itself, I would rule out lupus or sarcoidosis but I think maybe transverse myelitis should be considered". I grabbed my coat and thought to myself, YOU sir can keep your transverse myelitis, I will keep my MS because - A. I didn't ASK you and B. That can be worse, oh and did I mention I didn't ask you. Now I'm back going to my PCP AGAIN because I need yet another doctor! SMH Besides, I'm thinking... they wouldn't give me Lyme Disease when I picked it I'll be damned if he gives me something that could be worse! I'll take my MS and keep it moving. 
●12/27 It's my birthday, I'm happy but having mixed emotions when suddenly my hands become HOT! I look down and they are literally a different color. Yes family this is when I notice the erythromelalgia. I'm like a damn super hero or something. If only I could give people common sense whenever my hands or feet change colors. Or sanity!  I'll post more about erythromelalgia soon.
●1/6 I go to see my "stand in" PCP and he has NO clue I've had an MRI, X-Ray's or blood test. This man is talking about the CAT Scan I had back in Nov. he also proceeds to tell me I showed activity on a lupus test. HUH?! So like when were you going to tell me this? It's JANUARY!
When I finally get a word in to tell him about the test results he says, "Well that's consistent with MS". NO SH*T Sherlock!
A new neurologist and a second opinion.
This blog makes my photos look much lighter, my hand is a very deep, dark red and it is swollen.

My MRI Report

"My Kick Box! Do NOT pick me up!"

December continued...
●12/6 I arrive at the lab to take another Systemic Lupus test and various other test. I'm telling the techs in there I need everything to come back clean because I'm too young and cute to have anything serious... I SAID, I'm too young and cute... 
I inform them AGAIN my birthday is coming up soon so I need them to get it right.
As I'm leaving I see a guy wearing a Superman T-Shirt pushing a walker while kicking a medication box through the parking lot. I quickly tell him to let me get it for him because I know he's probably tired of kicking the box and I pick it up. WEEEEELLLLL, he shot me a look that could kill about 10 people at once and I said, "Or maybe I shouldn't get that for you" as I place the box back down on the ground. He gives me a once over then a short smile and says, "Pick up the box and read it". I'm totally lost until I see in big letters written on the top of the box as I am bending down, "MY KICK BOX!". Well now I'm completely embarrassed and I put the box back down apologizing the entire time. He then instructs me to pick the box up and read the other side of it.
It reads, "DO NOT PICK ME UP!". --->>Insert my dumb face here<<---
I of course apologize again when he interrupts me to tell me he has Multiple Sclerosis and he uses the box to exercise the muscles in his legs because he is doing all he can not to lose all of his mobility. I explained I was just told I might have MS and after a few exchanges he said if I do have MS he wanted to share with me the following -
A. You have a great sense of humor and you're positive, don't lose that.
B. You will have days that aren't so great but don't let anyone make you feel like your life is over.
C. Move whenever you feel like you can, it's very important. Rest when you need to rest.
D. You have a nice smile, keep smiling.
I looked at that man (wanting to cry) and I said, "You know what? You REALLY ARE SUPERMAN! Thank you so much for talking to me!". I knew then there was PURPOSE in our interaction. I was being prepared.
We say our good-byes, as I'm walking away I hear a couple behind me speak to him and then the female says, "Let me get that for you!". I just looked back and chuckled a little bit. I wondered how many times a day that happens.
To be continued....

The creation of "MS BROWN"

December Continued...
Now I will probably stop using so many date spans because it requires pulling out papers and my iPhone but I think you have the idea now.
●12/3 I went to the eye clinic and was seen by an ophthalmologist neurologist who examined my right eye but was unable to be given a field test. I was given no new info and was asked to return again on 12/4 for a field test. An example of a field test is when one eye is covered, while the other eye is fixated on an specific object while the doctor sits in front of you. The doctor will then ask you to describe what you see on the sides of your periphery field of vision.
●12/4 I returned and saw a different ophthalmologist neurologist who also examined me, I was given a field test but I was given no additional information as to what was going on and I was asked to return again on 12/6 for additional testing
●12/6 I returned to the eye clinic, I was given another field test, a color test, etc.
This time I had two physicians! One of the physicians (he sounds just like me brother which kind of tickled me) pulled up a chair and I could tell he was THE ONE who knew his "stuff". He told me he had been asked to take a look at my file and upon looking at it and the test he believed I had "optic neuritis" in my right eye.
What is optic neuritis? In my case - Inflammation of the optic nerve — or lesions (damaged areas) along the nerve pathways that control eye movements and visual coordination. Optic neuritis may result in blurring or graying of vision, or blindness in one eye. A scotoma or dark spot may occur in the center of the visual field.
He then explained he would like to send me for more testing because he felt the optic neuritis was caused by a disease. He asked me if I would like to know which diseases he suspected and I said yes.
He said, "Well, I suspect your optic neuritis might be caused by Multiple Sclerosis but it could be Systemic Lupus or Sarcoidosis. I'm going to order an MRI, blood test and chest X-rays". I said, "Okay but can I have Lyme Disease as a choice instead?" (I was thinking lesser of three evils, maybe?). His response was if I lived in the woods of NC he would go for that but NO, he did not believe I had Lyme Disease. He said, "Well, there's a small chance this is MS because people who are BROWN like you typically don't get MS but we will do an MRI to rule it out". In that moment I was BLOWN AWAY! BROWN LIKE ME?! I'm BROWN so it's probably not MS? Really? I wish I had all of the articles I've read on hand to give him since that day -http://www.medicalnewstoday.com/articles/260150.php
So me and my BROWN self left to go to the lab back at my PCP's office to get tested for LUPUS once again. My MRI and chest X-Ray were scheduled for 12/10. I just wanted to know what I was up against so I could have a fair fight!
To be continued...

Photo courtesy of: Umm, some site in my Google search (sorry)

Nov. Continued... The floor is wet! Wait, no it isn't! Yes it is! No it isn't! SMH

November 24th - Dec 2nd

●Nov. 24th and 25th - I woke up both days feeling like a truck had run me over about 50 times! I felt kind of like I was coming down with the flu again actually.
I called my PCP on the 25th only to find out she had left the practice with no forwarding info (what in THEE hell?)! They told me I could be seen by another physician there so I was scheduled to see the owner of the practice on 11/27.
●**News of the weird** I keep thinking the carpet is wet! I'm walking through the house and I think I've stepped on a wet spot, I go back to check it and it's DRY! This had happened a few times before but now I'm paying attention because it's becoming a habit. Why does the floor feel wet when it's dry? (I'll explain this in another post)
●11/26 - I contacted the vision center asking for my retina photos and my report, I also placed a complaint about the service (another story). I was asked by the manager of the store to come in and allow the optometrist to take a look at my eyes again free of charge, I agree.
**I forgot to mention by this time I realized on my own it is a floater blocking the entire field of vision in my right eye. Floaters are not uncommon in people who are nearsighted but they shouldn't be painful and look like cobwebs, black spots or lace veils that totally block your view.
At this time I have pain radiating from my left shoulder down to my left thumb. I also experienced intense tingling through my arms and legs (this tingling branches out to my fingertips and toes). My legs would suddenly stiffen and ache.
●11/27 - Before my appointment with the PCP I return to the vision center only to see the second optometrist I saw previously. He examines me again and is still stumped. He decides we should call a specialist. We call an eye clinic, I speak with two ophthalmologist who also tell me they think it's a sinus infection. *Insert WTH face here* I leave irritated and head over to see the PCP.
I arrive at the PCP's office and he does everything but knocks me unconscious with that mallet looking thing but we both agree, this is NOT a sinus infection! He decides I should have blood test to rule out the usual venereal/viral infections and to check for diseases such as Systemic Lupus. He also orders a CAT Scan to rule out an aneurysm which gave me a quick scare because one of my cousin's had to have a tumor removed from her brain.
I asked him to treat me for a sinus infection just for safety precautions and left.
●My left arm still hurts, I can barely move middle finger without pain and stiffness
●11/28 - Who has to go? Oh I do! Sudden urges to use the bathroom increase without warning, you better be close to the bathroom or prepare to let it "rain"
●My feet are ALWAYS cold, ALWAYS
12/2 I received a call telling me my Vitamin D was low and I need to take 500 IU per day. I was asked to come in and was set up with an appointment to see a neurologist ophthalmologist
I took all of the "Avelox" 400 MG (antibiotic) and "crap" "Norel AD", none of it worked. My eye still felt like someone was stabbing me in it all day and my limbs felt like they were having contractions while someone strummed against my nerves like guitar strings.
The Vitamin D deficiency is major in this journey that's why I included my greasy (sorry about that) lab report. I will discuss that part on this blog as well.
To be continued...

My "GLAUC-Y" (glaucoma) eyes!!!

The start of my 5 month journey to a clear diagnosis... 
Around the end of October 2013 I experienced a really nasty sinus infection, it took me about three weeks to shake it. I experienced hair and weight loss during this time period but the hair loss had happened before only I thought it was due to medication. My insomnia increased from the usual 5 or 6 hrs of sleep to about 4 1/2 hrs per night. Moving forward - November is when things began to kind of spiral out of control, I will attempt to shorten these post by using date spans so it isn't too confusing. If you have questions just ask me.
My symptoms -
Nov 12th - 19th
●I suffered from frequent Headaches (Odd because I am a migraine sufferer and take a daily migraine medicine)
●I developed a bad unexplained itch back in 2012 but it increased - I'd itch and scratch like crazy at odd times, ESPECIALLY right before bed. It became worse around this time, typically only my legs (mostly my lower legs and inner thighs), arms or buttocks would itch but now even my scalp itched *Station break* Can you imagine your buttocks itching like crazy at like 2 AM and you can't sleep? Wait, can you imagine telling someone the reason you're up is because you're scratching your... Uhh, yeah...
●Dry, red, eyes with pain (started in both eyes), I thought I was suffering from eye strain
● (The crazy sh*t) I started seeing bugs (gnats I thought) that weren't actually there. No, I'm NOT kidding, objects looked like they were moving when they weren't. Phew!
●I lost my balance and fell down at a fundraiser unexpectedly on the 16th
●My left eye felt better by the 19th but the right eye felt worse, I couldn't
look up, down, left or right without pain. It hurt to bend down then stand up. it hurt to to touch it (stabbing pain)
●Chronic runny nose
●More weird sh*t ! - I felt heat on my skin when there was nothing there, literally like hot water on me or a heated device against my skin
●I felt what I thought were spider webs or lint on my face when nothing was there
● I set up an eye exam because I had already tested suspect for glaucoma and thought that might be the culprit

Nov 20th - Nov 23rd
●I realize the vision in my right eye is worsening rapidly
●Nov 21st - Eye exam
My pressure reading isn't bad and my CD is 0.6 meaning I'm pre-glaucoma. This still doesn't explain the vision loss
●Nov 23rd - I return to the vision center for retinal photos and a follow up because I can no longer see out of my right eye
I see a different optometrist this visit and he says basically the same thing as the first even with the retinal photos, he could only add that the nerves in my right eye showed slight damage. He thought maybe I had a sinus infection but basically he had NO clue!

To be continued...

Who Am I? :)

I just realized I haven't introduced myself in case someone who doesn't know me comes along! 
Hello, I'm Nico or Nicky to some. Some people are probably wondering about the name of the blog, "MS Brown", it will all make sense as I move along in my journey. 
I have Multiple Sclerosis, Raynaud's Phenomenom (we'll get to that. LOL!) and a few other things. SMH
I displayed symptoms prior to my official diagnosis but I was told they were due to other reasons. I didn't argue because the physicians were able to tie them into either my very active workout regime, my osteoarthritis, my chronic migraines or my asthma.
I am writing about my journey because it's important to me to share my experience so hopefully someone else can be helped but sooner. We have to be VERY proactive about our health, we know our bodies better than anyone else and we can't rely on physicians to do it all for us. A friend recently reminded me of a good point, a person can read about someone else's experience and take on their symptoms... I implore you to make a symptoms list PRIOR to reading all of my post if you are in the diagnosis phase or suspect you have an immune-mediated or auto-immune disease. The mind can be tricky and sometimes we adopt from others because we are already in a space where we feel lost and desperately seeking answers. Those who are educated about MS (or any auto-immune disease and by the way MS is considered by some experts as an immune-mediated disease rather than an auto-immune disease) I hope will share with compassion. Again, some of us are new to this.  I don't mind post about auto-immune diseases in here but please understand this space was created for the MS journey so I ask those posting keep this in mind. I open this with love and I hope we can all learn and grow from this. Everyone is welcome! Thank you for reading this! I'll begin somewhere in my journey on my next post.

***Most of all, I want to kick MS ASS! 

Let's tackle the first question I get from some people. What is Multiple Sclerosis?
Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. The exact antigen — or target that the immune cells are sensitized to attack — remains unknown, which is why MS is considered by many experts to be "immune-mediated" rather than "autoimmune."

Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves.
The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.
The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors.
People with MS typically experience one of four disease courses, which can be mild, moderate or severe.

Info from - National MS Society

The photo shows the multisystem effects of MS.
Photo - Biology Forum

Introduction...

This blog is not just about my journey but it's also open with love to others - living with MS, who are being tested for MS, who have family members with MS, who have an auto immune disease (not MS) and would like to respectfully share or learn. Those who do not have an autoimmune disease are also welcome! Supporters are ALWAYS needed!
I ask everyone to please be respectful, I am in a learning phase as are many. This is a place to share so we can all learn and remain encouraged . 
**Critical Note** I do curse from time to time, I thought I would be nice and warn you in case this makes anyone uncomfortable, I will attempt to control my mouth but I make NO promises.  There will also be photos of retinas and MRI's in case you're squeamish. Welcome! :)