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.

[kader]

A related discussion, brain lesions was started.

[Dee]

Over the past 10 months I have been experiencing at different times pins and needles sensation in my left leg and right and left hands.Sometimes both legs feel weak. I have had various neurological tests and have been told that the symptons are possibly due to the side effects of Nitrofurantoin. Is there any known treatment which can help rectify this condition please?

[Bobbi D]

I actually read all the information on the web about the aspartame poisoning and thought "what the heck" - and gave up everything that indicated it had aspartame in it.  After three months there was NO change in my symptoms. But I kept at it and after a full year off of all the diet products, I still have the same symptoms I had before.
I am sure there are people who have reactions to aspartame - allergic or otherwise - as there are people who have reactions to just about everything in our food supply and/or environment. But I think blaming aspartame for everything that is posted on this forum is totally absurd. If only it were that simple!! The people coming here are really hurting and looking for answers and the doctors do their best to help them look in the right direction. Your hysteria about aspartame poisoning doesn't help at all.

[Melissa Kerr]

Without going into a huge medical description, I would like all who posted that they have similiar "synptoms" to stick together and maybe we can find a pattern of some sort.  I'm willing, how about you.  My email is:  ***@****

There are many similiarities amongst us and there are bound to be  something we can all look doing/changing/????.  The aspartame, I think, was a good suggestion but not applicable to us all.  I don't EVER use it.  Please include me in any responses you might make by email.  I want an answer too.  I have ideas but need a solid answer.

[anon]

Quit with the aspartame ****, maybe none of these people ingest it on a regular basis!!!!!!!!!!!!!!!

[Darcie to Renee]

Yes, I do get those red spots.  Please, please, please check out those website I mentioned!

[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?

[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.

[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.