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.

[Bobbi D]

Kelly - I did some reading on paraneoplastic syndrome and that seems to be related to tumors and/or cancer.  I have not been diagnosed with a tumor at all so this has never been brought up to me before. The only two "conditions" I've been worked up for are MS and Lupus.

[sarah]

hello. I'm just at the start of trying to figure out what's wrong and aall your comments have been of great comfort to me. i have been experiencing numbness on my right side, esp in my right foot, hand , cheek, lips and even my teeth feel funny. I've been tripping up and biting the inside of my mouth too-delightful. 10 years ago I damaged a disk in my lower spine but these new symptoms have appeared gradually over the past year. I went to my doctor after I had very bad neck pain and what felt like repeatative strain injury from using the computer. My neck was like a tree trunk and I couldn't lift it up and had to lie down. I aslo had severe headaches on the right side and shooting pain in my right eye and a little blurred vision. I have now been referred to a neurologist after sensing 'cloveness' in my foot ??? & the doctor said I might have MS. As you can imagine I'm very upset and scared and have a week to wait for the neurologist/scans etc. Can anyone offer any advice/information on the right questions to ask/tests to get/ways to remain calm! as it feels like I'm walking on pillows.
Many thanks in advance, Sarah.

[very similar symptoms]

Has anyone of you been tested for paraneoplastic syndrome. I was just reading about it and it fits with these kinds of symptoms. Also if you have what kinds of tests did your doctors use to rule it out?

[Bobbi D]

Renee...I'm with you.  if you want to email me at ***@**** maybe we can compare notes on tests and drs. ideas, etc.

[darcie]

WOW!!!!!  You all seem to have so many of the symptoms I have!
PLEASE, PLEASE, Please......have the radiologist review your brain and cervical MRI's to specifically look for herniation of the cerebellar tonsils.  

I was born with this disorder and only just now, at age 43 am getting a diagnosis.  I have Arnold Chiari Malformation.  Please go to my website (I don't think it loads right with some browsers)  AAACM.com or go to "WACMA" at http://www.pressenter.com
I am willing to bet that some of you have this!  You owe it to yourselves to find out!  Good Luck

[very similar symptoms]

Darcie do you get the pin point red dots on your body? I believe they are definately part of what is going on with me. Also does anyone know if you can get these dots with ms? I don't believe I have ms but can't help that little lingering doubt I have without having a diagnosis of anything else. Maybe we should form our own website. This is the first time in over a year where I have found people like me! We need to stick together and help each other?