Dr. says not MS ????

[doreen]

Well, I have a long history, so I'll try to make it brief and to the point.  My tingling began back in 1988 in my hands and feet.  I saw a neurologist who performed many tests which included MRI of brain and cervical and thorasic spine, evoked potentials, EEG - all of which were negative.  I also would have on and off an incredible pain in my head - more on my scalp and if you would rub it, it would worsen.  He said they were tension headaches - but I can tell you they weren't.  That neurologist retired and I was assinged to another one.  I went to the new one in 1992 for the same symptoms.  Did another Brain MRI - neg.  And mega blood work - you name it, he tested me for it.  All was normal - except for mono which was positive.  Recovered from that and had ting & numb (not truly numb - but felt strange) in all my limbs including cheeks and lips at times.  I also would feel pressure behind my eyes - but my vision was never affected.  I went back to him in 1998 for the same thing.  He did another MRI of brain - normal, mega bloodwork - which was normal.  I then started feeling a "weak" feeling in my legs and arms (sorta felt like noodles).  They weren't actually weak, but felt it (sorry I'm not making alot of sense).  I started having tingling in my spine.  He did an MRI of my entire spine - which was normal - no plaques were shown.  I started feeling better until October of 1999. It all started again.  Went to a new neurologist who did an examination that was completely normal.  Did an MRI of brain (with dye) - normal, Evoked potentials - which showed a few "clicks" but he said was basically normal.  He said I absolutely DO NOT HAVE MS.  He said I have Singular Sclerosis (or demyelinating disease).  He put me on bed rest for 5 days.  I didn't do complete bedrest, but rested a little more than usual.  My symptoms cleared up.  I have since been back to see him several times for the same symptoms.  A few months ago I had left sided symptoms - tingling down my entire left side face, arm, leg, etc.  Exam was completely normal.  I keep telling him I'm worried that I have MS and he keeps telling me I absolutely do not have it.  My last "flare up" which began a few weeks ago was again on my left side (also went to right hand).  My Left leg feels weired on and off - almost like I'm picking it up to walk, and my hands (my grip) feels weak.  I don't think it is, but they feel strange.  Some days I feel better than others.

So sorry to be so long, but in your opinion, do you think I have MS?  And if not, have you ever heard of singular scerosis?  I cannot find any information on this - I almost think he's making it up.  Because I keep questioning him about MS - he sent me to my GP for Anxiety.  Could these symptoms be from anxiety?  I think anxiety worsens them, but I don't think it is actually bringing them on.

After 4 MRI's of my brain and 2 of my spine (over a 12 year period) do you think if it was MS it would have shown up by now?  Do you think I need some other tests?  I don't think he wants to do any other tests because my exam is normal.  Does that silly exam mean much?  I went for an eye exam yesterday with dilated pupils - all was normal.

Thank you so much for listening - I really appreciate it.

[Teresa McAllister]

Hi everyone
Boy, what a relief to find we aren't all crazy.  I came on this
site looking for help.  Have alot of same symptoms as you all-
red spots, tingling, etc. etc.-- along with B-12 check Vitamin
A levels-thyroid level--have any of you seen a rheumatologists
for Fibromyalgia.  I am looking for a neurophysialogist (sp?).
I have bad balance--ENT confirms its not ears--I walk backwards
to the left or forwards to the left.  Have passed out on a tilt
test and no one can tell me whats wrong.  I been this way for
6 months.  Can't drive--have to have help going to Dr. or store
anybody out there with this problem.

[Doreen - To Me and Renee]

If you'd like to continue our discussions, my email address is Doreen.***@****

[me]

Hi ladies, well get a load of this.  all of us with these problems are all female.  We are the higher risk for auto-immune disorders.  

Maybe we all have something "out of whack"?  Im just very glad im not alone here!  I dont have any friends who can relate to what im going through and I seem to be the only one I know having these problems.

Oh another very strange thing.  One of my pupils is slow to react to lignt and at times looks larger then the other one.  Normal eye exams!???  anyone else?

I truly think its something like Lupus or Fibro.  Hang in there we will find an answer!

[ellenc]

Hi all..you can have a b12 deficiency if your body doesn't absorb it correctly. SO, you could be eating nothing but meat and high B 12 food and you still wouldn't get enough. You need to have an MMA and Homosysteine test as well as a B12. Many Dr's think that a low "normal" B12 , and be severly deficient. If you have a low normal and neuro symptoms, be very suspicious.

[Linda Davis]

Have any of you been checked out for sjogren's syndrome?  It mimics MS a lot and can cause dry eyes, achy joints, numbness and tingling.  Worth looking into.  Good Luck.

[doreen]

Wow, I guess alot of people have many of the same symptoms out there.  I do not have any vision problems, dry eyes, spots on my body, etc.  Just this tingling that comes and goes and now my left leg has a funky feeling (feels like I'm picking it up) - but to look at me walk it looks normal.  This feeling comes and goes.  And I too have had the weakness in my arms and legs - like I just lifted weights and my limbs feel like noodles.  I had extensive blood work about 2 years ago.  I go back to neuro next week. Maybe I'll have him do blood work.  Doctors hate when a patient requests tests (mine seem to anyway - this is my 3rd neuro).  How do you get vitamin B12 deficiency anyway?  I eat all kinds of food all the time, so I don't know that I'm lacking any vitamins.