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.

[CCF Neuro[P] MD, RPS]

Dear Doreen:  

Sorry to hear about your symptoms and the difficulty in trying to find out what is causing them.  I would agree and think that you do not have MS.  The time course of the symptoms would have translated into some changes on the MRI.  In addition, there would have also been changes on the evoked potential testing.  I think that the news that you do not have MS should be welcomed.  Although it begs the question of what could be the cause of your symptoms.  I have not heard of singular sclerosis.  Yes, you symptoms can be caused by anxiety, but whether yours are or are not I can't answer.  By the sound of things, I really don't know if you need more testing as I do not know which ones you have had.  But, likely you do not need more lab tests, unless the symptoms change.

Sincerely,

CCF Neuro MD

[amber]

I have been reading your posts, and everything is so interesting.
For about a year, I have been battling with dizziness, numbness in my legs and arms and all around weakness.  I have had complete blood work, numerous MRI's, the only thing that was negative was the neck MRI it said I have a herniation sitting on the spinal cord at c5/6, the neurologist said this could not be causing the leg pain and numbness.

Do any of you have numbness on your skin, when you touch does it feel numb to the touch? I'am very curious to what the dr. is going to tell you, oh and recently I have begun to get dry eyes..

The neurologist said with the conditions I have, it would of shown a number of lesions on the brain MRI, which came back negative, I'am still not convinced, I don't have MS, I would like to have a spinal tap.  Thanks for listening, hope you respond.

[me]

Renee,

Wow we are very much alike.  I have a 6yr old and a 1yr old.  This all began right after the 1yr old was born.  I've been tested for Lupus, MS, i've been seen by the top leading MS specialist in the country, i've had evoked potentials, complete eye exam, blood work, b-12 testing, hormone panel, thyroid panel, blood counts, neurological exam etc.  No anwers.  Some days are better then others, I get facial tingle, gets worse when I worry, my right leg gets a funky feeling and it at times feels kinda weak like i've been working out.  My joints occasionally ache, dry eyes, tired, some mild hairloss but its started to slow down etc.  So I just dont know.  I would really like to hear what the Dr has to say because this is so extremely common with all of us ladies here its got to be something!!!  Maybe Fibromyalgia, who knows, !!!!!  Best of luck to all and lets keep on posting and try to find an answer!  Oh here is the worst part i have found on the net, I heard that MS is linked to DRY EYES!!!  What the heck!  Something about a disturbance in the Autonomic nervouse system.  I just dont know what to believe.  I was on paxil in the begining of all of this but stopped because of extreme dry eyes, then when I went off my entire tongue went numb for 5 days.  Gosh its scarey!

[dory]

Boy do I ever get dry eyes! Feels like I have sand in them sometimes. Is there only one thing that causes this or are there many? I have been tested for lupus and it was all normal. I don't believe I have ms and I am really not sure about lupus but I really don't know where I fit in! It does feel good to talk to someone that knows where I'm coming from. I to have two small boys ages 4 and 2. This all started  on me a little over a year ago and it feels sometimes like it is getting the better of me. I will not give up though until I have an answer!

[me]

HOly Cow i've got the red dots to!  They are very tiny like the size of a pencil tip, but I get them and they never go away, only darken to look like a small mole. I also have tiny white spots that show when I tan.  Wow!  I also get extremely dry eyes lately.  I thought it was the anti-depressant I was taking but when I stoped they are still very dry??? Anyone else?

[very similar symptoms]

I don't get numbness anywhere but my arms sometimes ache to brush my hair or teeth, put sheets on the bed or put a shirt on. My legs hurt when I bend at the knees and then go to stand or feel achy when climbling the stairs. My scalp hurts alot and I also get alot of tingling on my scalp as well. I also have a weird feeling in my left eye that comes and goes like it is week and sometimes it aches. My mri was normal and lupus testing was also normal. I also have had so much more going on as well and just wish somebody knew what was going on! With all my symptoms I seem to fit in alot of categories. Renee