MS? or not??

Hi. I was on here a few weeks back asking a few generic questions. I thought that when I went to see the Neuro he for sure would tell me ms. I had already been told by two drs and the neuro that I had brain lesions (from an MRI, CT scan did not show them) Anyway, they did EVERY possible cardiac test on me and I believe they were all normal for my age (59). I see the Cardio dr on Mon, so will see for sure. Anyway, I failed the Tilt Table test. BP dropped to 52 over 29.  Yeah, that was exactly how I felt each time I passed out:) LOL  I had told the neuro that my dau is a nurse and for yrs had told me she thought I had ms. I have had unexplained symptoms off and on for 14 yrs, in and out of PT, etc.  When we read and heard brain lesions, well, we thought that capped it.  I went bk in to see the neuro and he said that he was putting me on meds for my low bp episodes and that now he thinks my brain lesions are maybe just hardening of the arteries (in the fine capillaries of the brain) and that all I had was the autonomic dysfunction going on! Now look, I DO NOT want a dx of ms!  I DO WANT some of my life back like it was 3, 4 yrs ago! I had 15 procedures on my back in 2009 (burning nerves w/ radio waves, epidural shots, etc) to try and relieve the pain and numbness down my leg, in my hip, in my tail bone, SI joint, etc. Guess what, the pain is still there:(  If I DO have MS, I would like a correct dx so I can get on the correct meds. I am on Neurontin for an old inj. to my leg and I did not think it was really doing anything, but was out of town for 3 days w/o them and let me tell you, the pain level escalated everywhere!
So, do I just go along with this guy for awhile, do I find another neuro, do I try to find an MS specialist neuro? Right now I am at 100% out of pocket max, so anything I can have done before Jan 1 would not cost me anything.
One time my entire rt side slowly drew up and I couldn't even dress myself or brush my hair. 1 dr said fibromyalgia, another did xrays w/ dye in my shoulder, some xrayed my back, 1 told me there is no such thing as FM and it was all totally in my head. I found a great lady dr who put me right into pt...3 mo, 3xwk and I got so much better.  Then about 3, 4 mo later, it all started coming back again. She put me back into pt, 2 mo, 3xwk and it went away. She said that although I tested neg for Lupus and RA, she thought that later in life it would show up.  I moved, didn't have any ins, etc.  Symptoms would wax and wane, but I would do the pt, go on 800 mg of motrin 3x day for 2 to 3 wks and come though it. I have had many UTI, no known reason. I get some serious twitches but just figured everyone does, sometimes.  I get debilitating migraines and have even passed out from the pain. My RX for them is Zomig ZMT, 12 pills a mo as needed.  Sometimes when I get up from bed I am a little loopy feeling, like the Weebles...I always wobble to the right.
OK, so I am weird, I am rereading this and I sound like a hypochondriac!  I am just so sick and tired of being sick and tired. The bp meds have brought my lows up, but now my normal is high and my high is really high. I am on the lowest dose and now taking them every other day! I think that is just treating a symptom, not finding the causes.  Any and all feedback will really, really be appreciated.  Thank you

[msgrandmaval]

Forgot to add, I had the Lumbar Puncture done and it was normal, and when the dr said not ms, I asked him if there wasn't people w/ ms that don't have the signs in the spinal fluid and he said yes, but that would be very, very rare. I had heard it was as much as 5 % of those dx w/ ms have no signs from LP. Is this correct?

[Lulu54]

Greetings,
The neuro has told you correctly - the number is about 5% for a negative LP but positive MS.  But it isn't so rare if you happen to be one of those 5 in 100.  

I'm not sure what to make of your history - the fact that PT has resolved your problem so many times makes me wonder.  

Dysautonomia can be a wicked problem to live with - hopefully the cardio will assist you in getting this under control.  Then you can see what symptoms you still have.

You probably know the MS is a diagnosis of exclusion and it can often takes years to be dx'd with MS.  Many people here have been in limbo for over a decade.  


If you have specific questions we might be able to help with, please ask.  Can you do us the favor of next time breaking up your post into smaller paragraphs?  Many here have vision problems and reading a solid block of text can turn into an impossible task.  

see you around, Lulu

[msgrandmaval]

Thank you and I will try to be more thoughtful! It is just so emotional to even try to  put your thoughts on paper. I have brain fogs that I never used to have, so then I try to get it all out at once.
I see the Cardio doc tomorrow, will see what he says.  Again, thank you for your time.

[cardiactec]

Sorry you're going through all this. I have dysautonomia but instead of my BP dropping my heart rate from lying down to stand goes from 80's to the 190's-200's..... I also have gastroparesis and small bowel dysmotility, both blamed on the dysautonomia.

I started having problems with urinary incontinence, leg tingling/burning, arm burning, muscle twitching and spasms. They did a spinal tap on me and mine was normal. My neuro is now wanting to do an MRI (this is a Boston neuro) because he acknowledges there is still a chance it could be MS.

Blair Grubb interestingly enough (he is a cardiac electrophysiologist in Ohio) specializes in POTS(the type of dysautonomia I have) along with other types of dysautonomias, and he wrote a research paper in April on POTS, dysautonomias and a potential correlation/connection to MS in this population. Some are diagnosed with dysautonomia and years later found to have MS (this was part of a lengthy research project he was involved in). If you google POTS, MS, and Blair Grubb you can find the article.