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

[me]

Hi to the gal above.  I keep finding more people that are just like me.  I've got to tell you that everything you have described sounds identical to me.  I to have had a brain MRI, the evoked potentials, eye exams blood work etc and nothing.  yet I get the "all over tingle" especially in the cheeks.  My right leg gets Noodle feeling, both calves ache, now today top of my arms feel like I have been lifting weights.  My eyes feel pressure behind, I have blurred vision (was diagnosed far sighted) but it comes and goes.  Have been seen by a top neuro, told MS his highly unlikely becasue things seem to continue without a real break.  Its scarey for me and like you mentioned anxiety does worsen it but I feel the same as you, it is not the "cause".  I can be willing to bed the dear Doc on here would tell you that in a 12 yr span of symptoms that you would more then likely have changes on your MRI or exams.  See for me its been almost one year this all began and gosh if it is MS I must have the worst form because of the way im feeling.  Thats why they said highly unlikely.  Every person is different with MS and it shows itself differently in everyone, but I think the Drs have a pretty good clue (the good ones) if what we say sounds remotely like MS.  My guess for myself and this is only a guess is that its something systematic going on.  I feel that after a pregnancy things went out of whack.  I only hope it disappears some day.  I can tell you anti-depressants do take my mind off somewhat but by no means remove it.  But they do help.  Anyhow I hope I did not complicate things for you but I just wanted to tell you  that you are not alone.  P.S. How old are you?  Im 31.

me

[carolyn robles]

I do not know for sure, but my understanding is that an MRI will
definitely confirm MS, there is absolutely no question.

[doreen]

Thanks to you that posted above.  I'm glad I'm not alone.  I'm 33 years old with 3 children, ages 5, 3, and 1.  What exactly does "systematic" mean.  What did your doctor tell you what your diagnosis is?  Just curious what others are being told.  I hope to God I do not have MS or any other serious disease for that matter.  My neuro said he doesn't feel it's anything serious, but of course, I don't feel well and I know something is going on - I just don't know what.

[me]

Doreen,

Systematic typically means something with the body's system, like Lupus or an auto-immune disorder.  I honestly would take that over MS any day but any illness is not good.  Since my problems like yours are so wide-spread it makes MS very unlikely as plaques would be shown all over my brain and spine etc.  And the rate this has all come on me would be highly unusual to be MS unless it was the rapid progressive form which is pretty rare.

To the other gal above regarding the MRI you can still have a negative MRI and have MS, not only is it diagnosed by MRI but by a clinical exam.  So say your MRI is normal but you show other signs of MS like rapid reflex, weakness and all those things they look for in an exam, your DR can still diagnose you with it if he feels you clinically show all the signs.  Its difficult from what I hear but someone like the physician on this board who is highly experienced in MS would be able to pretty much know if it sounds like MS or not.

Anyhow Doreeen your not alone, I have two kids to.  Maybe this will just be one of those things we have to live with, and hopefully it stays at the level it is now.  Just hang in there you are not alone and if you ever wish to email me just leave a post here.  Take care!

[norma]

Hi Mareen, Here is some information from an expert. I started having the same symtoms you are having, except with bladder and bowel problems, 21 years ago.Weakness in my legs and tingling, also pain. My GP sent me to a neurologist and after exam and tests,( MRI was not available at that time)I was diaganoised as having possible MS.Within 2 years my neurologist said definete MS
but all my tests were normal. I was evenually confined to a wheelchair and became bedfast in 1998. I was admitted to a hospital at that time and a battery of tests were done including a MRI of my brain, spinal cord and spinal tap. That was my first MRI. These tests were all normal! No lesions in my brain or spinal cord, and i will say i haven't had any vision problems. I was tested for vitamin b12 and found to be deficient. This was not the same neurologist that diagnosed me with MS. This dotor told me i did not have MS but b12 deficience that mimics MS. I did have an abnormal signal on MRI of my cervical area but was confimed damage due to b12 deficiency. I am walking now after 7 years confined to a wheelchair. I had many injections of b12 and now on a monthly injection for the rest of my life. My point is, keep looking for a correct diagnosis for your problems, get a second opinion. I hope you don't have MS. Have you been tested for vitamin b12? It took 18 years to find out what was really wrong with me. It is possible to have MS with a normal MRI but after years of prgressive symptoms, i would say lesions of MS would be present. Good luck and i hope you find a correct diagnosis for your problems.

[Jan Bailey]

Check out the mitochoondrial forums at Mass General.  I have had the tingling, etc. for 5 years and worked up many times for MS.  Muscle biopsy finally showed red ragged fiber, diagnosis:  Mitochondrial myopathy. There are many entities out there that can make you tingle, blurry visioned, etc. besides MS...Mito is very common (unlike what you often read....estimated l out of 4000 have some kind of mito disorder) and anytime you can't directly pigeon hole symptoms into a category or disease, you should consider mitochondrial problems.  Your neuro should know about this, and if not, ask to be referred to a MDA neurologist.  Diagnositic testing includes lactic acid (blood), muscle biopsy, emg at junction of muscle, and others.  Good luck (and don't believe it is stress...I had this 5 years before someone finally took the time to put the pieces together)

[Amy]

To Jan B   God Bless You!

[dory]

Doreen, I can't believe how much your story sounds like mine! Like you I still don't know what is going on and can't find a doctor that seems to know how to help me. I'll keep trying though, especially for my children! I was wondering if you or any of the other people that posted ever notice and tiny red dots on your body. I have them all over my chest, upper arms, stomach, and upper thighs. I am sure it is related to what is going on because if started soon after my symptoms started. Well thanks for listening and I hope everyone finds the help they need. Renee

[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?

[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]

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!

[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.

[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

[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.

[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.

[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.

[Doreen - To Me and Renee]

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

[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.

[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!

[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.

[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.

[very similar symptoms]

I'd be a guinnea pig to!