MS or POTS

[flowerbug17]

I am a 42 yr old female No history tobacco, drug or alcohol use. Over the past 2 yr. I have been experiencing some vague neurological symptoms: left foot drag occasionally, decreased coordination at times, numbness and pain, episode of searing pains through chest and arms on 2 occasions (very scary), pain in left thigh, blurry vision intermittently (with longest vision problem lasting few weeks) at the same time frame as the blurry vision I also had tremendous brain fog. I felt like I was on autopilot and couldn't recall most of the day (this has since improved somewhat). I have fatigue and a history of PVC's and tachycardia, very occasional migraine HA, periodic dizziness, no other major health problems.  
So I went to local neurologist (Nov 2007). and inquired about M.S. He did blood work:  ANA, Chem. 14, B12, and Sed. rate- all okay, but MRI brain showed "a few scattered white matter lesions". I was then sent to 2 neurologist in Indy. (Dec 2007- Mar 2008)  The first doc felt that I had strokes from and atrial septal defect- I had a Trans Esophageal Echocardiogram, it was good- no problem there. The next doc said he felt it wasn't MS and ordered MRI cervical and thoracic spine and evoked potentials-all okay. But he does have me set up for another MRI brain in 1 yr. after initial MRI. I spoke with a nurse friend and she asked more questions and stated she had to go to Mayo and there was diagnosed with POTS. After we talked I feel like this could be what is going on with me. Does anyone have advice, and does anyone know where to find a doctor or clinic for autonomic neurological conditions? I still feel crummy some days and seem to have more questions now than before. Any replies would be appreciated!!

[Deb61]

I learn something all the time from this forum.  That site that slightlybroken gave you was a good one!  I also found this one:  http://www.potsplace.com/

Oh, I forgot to ask--have you been tested for thyroid disease?  That was one of the things mentioned on the potsplace.com that causes POTS symptoms.  It sure can make you feel bad, too.

Deb

[slightlybroken]

Hi

I'm not sure about where to find a doctor or clinic for autonomic neurological conditions but I'm sure other people will chime in with information. I would like to ask you some questions if you don't mind. Does your symptoms come, stay awhile, and then go or are they always present? Have you ever passed out? Do you have low blood pressure? Was your ANA rate normal?

Sorry to hit you with all these questions. A lot of your symptoms sound MSish but when I read about POTS it did fit with that too. Most people who have MS will start out on a relapse remitting course meaning they will have symptoms for anywhere from days to months and return to the way they were before the symptoms, or almost the way the were. Did the neurologist test you for any autoimmune disease or MS mimics? The process of DX MS can be very hard. All other diseases and causes have to be eliminated before coming to that DX unless you have a clear cut case, which most people don't in the early stage of the disease.

I found a good website for POTS for information on treatment, symptoms, etc...
http://home.att.net/~potsweb/POTS.html

If I'm not mistaken it was also in a episode of Mystery Diagnosis on Discovery Health. One of my favorite shows. The lady who suffered with the condition main complaint at first was the tachycardia and the passing out spells because of her bodies nonability to keep blood flowing through out her body in a standing position. Her blood would go were it needed to go but could not fight gravity to bring it back up causing the tachycardia and passing out spells.

[Deb61]

I don't know much about POTS.  I did a google and found that the acronym stands for Postural Orthostatic Tachycardia Syndrome.  Is this problem you are referring to?  Some of your symptoms cannot be explained by POTS alone.  The white matter brain lesions, left foot dragging, blurry vision, etc. cannot be explained by this disease.  However, I believe that autonomic problems and MS are connected.  

As far as finding a doctor that specializes in neurological conditions, I really don't know.  However, my sister, diagnosed with MS a few years ago, has an autonomic neurological condition that was diagnosed by a cardiologist.  She had the echocardiogram, stress test, tilt table test, etc. and she was diagnosed with an autonomic neurological problem.  What it was, I can't remember, but it is an autonomic neurological problem.  I think I have something like this, too, but haven't been diagnosed with it.

Do you have brain stem lesions?  This may account for autonomic neurological problems.  I know you've been to two neuros, but your symptoms sound very suspicious to me.  I'm not telling you that you have MS, but your symptoms sound all-too-familiar.    

A lot of questions popped into my brain when I read your post.  Have you seen an MS specialist?  This is a neurologist who specializes in MS.  This person would probably be more apt to rule in or out an MS diagnosis.  

Have you had a lumbar puncture?  This would also help with a diagnosis.  

Did you have your MRI completed with and without contrast on an MRI machine that was at least a 3T?  This really is important.  My first MRI was done on an open MRI machine with very weak magnets and without contrast and revealed negative results.  The one done on an 1.5 MRI machine with contrast showed my lesions.    

Plus, have you had any EVP's (evoked potentials).  This will help to distiguish where your neurological problems are stemming from.  

Again, I'm saying that you have MS.  There are so many neurological problems that cause the symptoms you mentioned:  lyme's disease, lupus, other connective tissue diseases, migraines, Sjogren's to name just a few.  

Your chest pain problems are disconcerting.   I would go to the ER room with severe chest pains, tachycardia, and pains radiating down your arms the next time that happens.  For now, I would set up an appointment with your cardiologist ASAP.  Then, I would set up an appointment with an MS specialist.

BTW, welcome to the forum!!!!!!!

Deb