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.

[John]

Wendy, im 36m and my symptoms are very similar to yours. even the tremor - mainly on the left side of my body.  Id like to hear more. Doctors have found nothing but i am still going for tests.

[steve]

Hello Everyone,

I have just discovered this forum and have read through all of the symptoms that others are having.  I have all the same symptoms - numbness, heavy leg syndrome, weakness, blurred vision, fatigue, tremors.   I have had these symptons for ten years now.  I have been to many doctors including Cleveland Clinic's Melon Center For MS.  Many tests have been done including multiple MRIs. No lesions have been found however tests indicate my vision may be failing.  The doctor at the Cleveland Clinic placed me in a category of "probable MS".

I also have just had surgery for a ruptured disc six weeks ago and have been diagnosed with lumbar stenosis.  The symptoms related to this condition were distinct and different than those I have experienced over the last ten years.

I am a male Age 50. I also have the red dots on my chest and arms.  

I wish the best to all of you in your search for answers.  Take care.

[very similar symptoms]

I'd be a guinnea pig to!

[Bobbi D]

I'm reading all these posts and feeling like someone wrote about me.  For SIX years I have been going through heck trying to get a diagnosis.  For months I'm fine, no symptoms at all.  Then I get overwhelming fatigue accompanied by (not always at the same time) tingling and numbness in my feet and hands, dizziness, balance problems, joint aches, muscle twitches, etc. In the last few months I have also had numbness in my left leg - sometimes so bad I cannot walk on it at all.  I have trouble climbing stairs - feel like I've got lead weights in my feet. I also run fevers on and off. And now (for about 2 months) have these little teeny tiny pinpoint red dots on my arms, chest and shoulders.  I have a wonderful dr who does NOT think I am a quack - even though sometimes I feel like one.  He has run test upon test. First they thought lupus, but bloodwork for ANA was never elevated - I did test positive for Sjogrens but that only affects the eyes (oh, yeah - dry eyes too!) and salivary glands.  They have done bloodwork for everything from lyme to arthritis to deficiency etc.  Always normal.  Then last year when I started getting a shock down my back when I moved my head forward, he sent me to a neurologist.  The neuro was convinced I had MS and started a work up for that.  My neurologic exam showed hyper reflexes, a positive Babinski reflex in one foot, and Lhermittes (the shock feeling down my spine). He sent me for a brain and c spine MRI - brain was normal other than a "empty cella" which didn't seem to concern anyone? and the c spine mri showed some wearing away where the bone was actually comprising the spinal cord a  little bit - but definately not serious enough for surgery and, according to neuro definately not causing all of the symptoms - altho he did say it was causing the hyper reflexes and Babinski/Lhermittes.  Then I broke out in a rash on my face and they were once again convinced lupus, but once again bloodwork negative.  I am so tired right now I can barely get through the day. have three children, so I fight every minute to function for them.  but there are days it's a struggle to just get out of bed.  Then for weeks, sometimes months, I'll feel perfectly fine again.  
I just think it's a little strange that so many of us have these same symptoms - there must be something to it.  Why can't the drs figure it out?  If anyone knows of a medical group looking to do research to try and pinpoint our problem, I'd be more than happy to volunteer to be a guinnea pig.  
It does help to know I'm not alone though.

[Wendy]

I cannot believe after nearly a year of exactly the same symptoms, it tingly foot, weakness on left side of body, dry eyes and mouth that comes and goes, and basically feeling that I am losing my marbles that I have found so many other women with the same problems.  Do any of you find your symptoms worsen the day after having a few drinks.  Also lying down seems to give me the tremors (feels like a small earthquake).  Doctors are starting to roll their eyes when they see me coming so I have stopped going.  I am 30 years old with a 4 year old and a 2 year old and feel like I am no good as a mother or wife as I am always tired or in pain and irritable because I am so preoccupied with my health.  I wish I could get some answers so I could get on with my life.  Anyway seeing that I am not alone has made me feel a lot better.  For today anyway.

[very similar symptoms]

When I lie down I also get the tremors. It is much worse when I am tired. Isn't there any doctor out there that has heard of this before? I don't believe I have a mystery illness. I just can't find a doctor that can or is willing to help me! Maybe if we all keep in touch with this we could help each other.