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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

so my story seemingly starts back in 2005, when my youngest was about 1-1/2 years old. Technically awhile before that but that's when I went to the doctor about symptoms. I've always had problems with heat and on occasion I'd pass out from it. The first time I was in Jr high. However after my daughter was born, I'd notice a lot of pain in my upper arms and legs. I'd be holding her and she would pat me and it hurt! I know I had other symptoms to warrant my doctors concerned for MS, Myasthenia Gravis and Fibromyalgia, but the only one I can remember is my eyes would get lazy, like I had to hold them open. He did the pressure point check and I had none. I had the MRI and it was clean with and without contrast. I'd been to a nuero who sent me to a nueromuscular specialist who did checks and blood work for MG and nothing. His answer was heres a prescription see if it helps. (my thought was why take a drug if I don't have the disease?) By the time I was done with that I was D-U-N! Figured I'd just live with the pain! Then in 2010 I had a bad pass out experience early one morning (no reason warranted) and I had gotten hurt as my face met the ceramic tiles! We decided it was time to check again and headed to chicago where I saw a nuero explained all my symptoms (including new ones) and I'm thankful I wrote them down, but seemingly hindsight at this point. He ordered a tilt table test and I was diagnosed with Nuerocardia syncope cardio inhibitor 2B (which basically means I pass out and my heart stops for up to 30 seconds) I then saw the same day a Electrophysiologist who said I needed a pacemaker. Which I had implanted in June of 2010. I'm baffled today as to why they didn't do another MRI and am thankful I found the list in which i wrote down all my symptoms at the time.
Here is the list I wrote down:
*limbs painful to the touch
* eyelids get heavy and i feel the need to hold them open.
*dizzy feeling as if I might pass out
*drop objects from my hand
*trouble remembering words (seems i know what i want to say but can't)
*head pain constant (temple to temple and across top of head)
*eyes hurt (this seems to happen at night with bright lights, i need a dark)
*heat problems
* leg pain worse at night, but sleep seems to take care of it
*dizziness with feeling of things spinning to the left
*tachycardia issues
*tingly lips

Again I know it's hind site but why would they look at the clear MRI from 2005 and just except it and not do another?

My sister was then diagnosed in March 2012 with MS and my concern was I still had all these symptoms plus!. I watched her go through so much I didn't want to be the person who was always saying "OH i forget a lot too, or yeah my fingers seem to be going numb)
but it did seems to be getting worse for me.

New symptoms included:
*choking on my own spit seems crazy but i'd start choking and don't even remember going to swallow, doesn't seem to happen while eating (maybe more conscious of it?)
*I mess up my speech a lot! I've always joked about speech dyslexia, but it seems to be getting worse, words running together becoming slurred, forget simple words, thoughts, ideas. Shoot yesterday I apparently said good morning to my daughter (now 9) and she went back to her room and when she came out again and said good morning she was like mom you already said good morning...i don't remember even seeing her until then ....
*I had my eyes checked last year, but noticed them getting worse. blurred during reading, and would get blurry/double vision looking far away but with that could look away and refocus. I did go to the eye doctor who said my far sight was fine but prescribed reading glasses and they do seem to help some, i know I can't read at all with out them.
*My hands always feel numb/tingly as well as my feet on most days.
*when I would jog my left foot would drag and on occasion I trip over nothing (I haven't been able to jog for over a year now)
During this time, at the beginning of May of 2013 my niece (daughter to my sister diagnosed with MS was also diagnosed with MS. I felt there was no way I could share my symptoms now (couldn't burden/worry my family)
As the numbing/tingling continued to get worse, it reached a point where my entire left side of my body was numb/tingly and my husband felt it was TIME! I called my family doctor, and with the history in my family now positive for MS was very concerned. Problem, I can't have an MRI because of the pacemaker MY EP had tried to do a heart MRI and even with turning down the pacer all the way, it still reacted and the test was canceled. It's so difficult to get in to an nuero as a 'new patient' which was my only hope as Fam Doc thought it best to get a spinal tap and he couldn't order it.

As the weather gets hotter symptoms seem to get worse. numbness/tingly comes and goes worse with heat. I've noticed a burning sensation in my cheeks (both sides) I'd say it feels like someone is holding ice cubes to my cheeks until it burns so bad you want to cry. Over all pain level while happening can range from a 6 to I'm crying. I've also got some twitching on my right cheek.

I'm able to seemingly drive ok but there are days that I feel like my head is a ballon attached to my neck by a string. I've also experienced some car sickness at times.

I finally told my sister and and then had a very bad spell, she told me the best way to get any where is to go straight to an ER. So the next morning after that bad spell, we drove back to Chicago (wednesday) and went to the ER. The ER doctor did agree to prescribe a 5 day regime of Prednisone (think it was 40 mg a day) which seemed to subside some of the issues. The ER doctor got my into a nuero on Monday of the next week. He too looked at the MRI from 2005 and said looks good. Well no kidding it looks good! BUT it's now 2013!!! I explained the pacemaker and since my EP was in same hospital he was to talk to her about turing it off so I could have the MRI's I needed. (I'm not pacer dependent and only use it 1-5% and that's while I'm sleeping) at this point my husband and I are wondering if I even needed it in the first place!!

The nuero ran a series of blood work
B-12 and folate
ANA Comprehensive plus profile
Anticardiolipin Ab, IgG/M, Qn
IFE and PE serum
Free K+L Lt Chains, Qn, S

He also ordered:
Visual Evoked Potential (that check board made my nauseous!!)
SSEP lower
SSEP Upper
Auditory Evoked Potential

did some in office observations, etc and concluded that because of the 2005 MRI he is convinced that if we did a spinal MRI we could be 98% sure it wasn't MS as of then he considered it 93% not MS, said he would speak with my EP about the MRI's and the pacer, and then explained the risk of a spinal and how he felt these other tests should be done first. and then I'd go back in a month which will be friday for all those results. It was after that visit that I found the papers I'd written in 2010 with symptoms listed.

I walked away feeling like another doctor didn't listen to me and as my husband and i discussed things we are wondering if my heart issue isn't just another issue of whatever it is that is going on with me?

I plan on going to the dr appt insisting on a spinal tap, I'm going with the attitude that He better have talked to my EP or else! My husband is going with that attitude that if yet another doctor just writes this all off we will head directly to Mayos.

I also have been diagnosed with IBS 1998, Endometriosis 1998, and have always suffered from Psoriases.

I DO NOT want MS! The thought scares the bajeebers out of me! Thought of having MS and not being diagnosed scares me too! I know this is common.

I'm thankful to have my sister and niece to support me and understand these funky symptoms.
I'm thankful for a husband and my 3 children who support me and don't call me crazy when I know it's real.

Opinions would be great!
Questions I need to ask would be great!
Any advice would be great

My apologies for this being so long.
I'm so at my wits end

thanks in advance,


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