MS diagnosis...

[Kim Neidert]

In January of this year I began experiencing numbness and cold sensations in my feet, which spread up to my hips over the course of a couple of weeks.  I went to my primary care doctor and told her of the patchy numbness, cold sensations, wet or warm sensations, localized itching and she ordered a brain MRI.  I should say at this point that my younger brother was diagnosed with MS two years ago as relapsing-remitting and is currently taking betaseron.  My MRI showed "some small areas of increased signal intensity on proton density T2 and FLAIR imaging sequences in periventricular regions about the junctions of the bdya nd the atrium of each lateral ventricle...also a focal similar lesion in the left cerebral peduncle anteriorly...possibility of MS should be considered with these findings."  I had a normal visual evoked potential, normal nerve conduction study, spinal fluid was within normal limits (although due to a minor lab error they did not test for olgioclonal banding).  My somatosensory study concluded that they were "abnormal bilaterally demonstrating a decreased or absent response on the left leg and delayed response on the right...suggestive of slowing in the central somatosensory pathways...suggestive of demyelinating disease."  I just had a spinal MRI, cervical, lumbar, spinal and that was "within normal limits" (I have not yet seen the report on this one).  I am getting increasingly frustrated in looking for an explanation for my symptoms, which exacerbated when I had the flu, and have remitted to patchy numbness from the knees down to the bottom of my feet.  I am exhausted and have been since about three-six months after the birth of my second child 20 months ago.  Despite adequate rest, I am exhausted upon awakening in the morning.  I have some imbalance and find myself stumbling or bumping into things when I never used to do this.  Walking in the dark or closing my eyes while standing causes me to feel like I'm falling.  My neurological exam was normal except for two things:  when told to close my eyes while standing, I tipped to the left and I have significantly decreased and absent reflexes in my knees and ankles.  I realize that this is indicative of a peripheral nerve problem while MS is a CNS disease.  My test results are all conflcting and I'm not sure where to go next.  I don't see my neurologist for another six weeks.  Are we barking up the wrong tree?  Where, other than MS should we be looking?  I apologize for the length, but I am becoming increasingly frustrated.  It seems to me that because my symptoms are not severe enough (yet) it's not as important to obtain an explanation for them.  My brother showed symptoms of MS up to two years prior to his dx (numbness, poor balance) but it was mistaken for an old back injury until his spinal MRI showed plaques.  Where exactly do I go from here?

Thank you very much in advance for your advice.
Kim

[Joe]

Hi Jo, Julie, Ellen :)))

I have been diagnosed with severe anxiety and panic attacks. I have all those symtoms and more.
I went to see a sleep disorder specialist because I get the "jerks" in a rest position that keeps me awake. I lie down at 12:00am and never fall asleep before 03:00am...imagine what I look like at 07:00am LOL

I wanted to know if all this "jerking" around was in any way related to the anxiety or am I trying to impersonate Elvis?

Thanks ladies and I hope you have wonderful days

[Joe]

Hi Jo, Julie and Ellen :)))
It's been 3 yrs. since I started getting numbness in my face...lightheadedness.....my arms and legs become numb. When I lay down, whether during the day or at night I get these jerks that keep me awake. I think I slept 4 hours in the last 3 yrs. LOL (kidding). The Dr. told me I had severe anxiety accompanied by panic attacks. When I walk into a building the first thing I look for is the exit.
I went to see a sleep disorder specialist and he thinks I have "hpnogojic myoclonus".

Anxiety and Panic is terrible. I haven't worked in 3 yrs., the Fire Dept. won't allow me and I wouldn't want to jeopardize anyones life because I can't concentrate on my job. I'm always thinking, "am I going to get vertigo? will I faint?
Isn't that something? Before this I never had a cold or sneezed.
I,m taking "xanax" for now, but my Dr. wants to change my medication because "xanax 0.05" doesn't last long.

I'm rambling LOL...thanks for reading this

[Eva Rodriguez]

I too am afraid of my symptoms as you ladies have described them to the tee.  Yet my doctors tell me anxiety, they found a herniated disc at the C5,6 level. My EEG was normal, myelogram showed slight indentation into the anterior aspect of the subarachnoid space at the interspace between C5 and C6.

They are now telling me these are the reasons for my symptoms, but that still does not describe the tremors I get on a daily basis.  My tremors get worse when I am upset but seem to just be there when I am resting.

[sally]

Reply to my comment:
My diagnosis was based on MRI results (3 brain, 1 cervical and 1 thoracic) and clinical findings (balance/incoordination tests, reflex tests, etc.) The only lumbar puncture I had was at the very beginning of my symptoms and it was normal.

My first symptom was severe vertigo (the feeling of the room spinning around you, rather than "lightheadedness.") It was accompanied by nausea and the absolute inability to stand or walk. That lasted for nearly a month, despite antibiotic treatment for suspected inner ear infection. No one verbally suspected MS, least of all, me.

A few months later, I developed numbness and strange tingling/burning sensations in my feet and on the left side of my face and also a "tight band" sensation around my trunk.

By the time I went to UCLA in 1995, I had been having almost constant "possible" MS symptoms for about 2 years. In fact, they had gotten worse, and new ones poked up. They included:  difficulty walking due to incoordination, lack of balance and by the time I went to UCLA, stiffness and some weakness in my legs. Also  incoordination in my hands, which was variable.

While it was a relief to know that I wasn't crazy, and that I now had a face to this "thing" that had been thrown at me, I tried to put things in perspective, but that taqkes time. It also takes a lot of self searcghing to make sure that you dpon't let it drown you in anger, loss and depression. Which it can do. And why it is very important to make a life for yourself that is life-affirming. If you do find you have MS, remember that many symptoms are only annoying and not disabling (especially sensory ones.)  

My symptoms are now pretty bad. I have to use a wheelchair when I go oiut unless its just a few steps. Then I use a walkerr or forearm crutches. I don't drive anymore. I miss hiking, Scottish Highland dancing, skiing and really hate the weight that has snuck up on me. I am unable to babysit my little grandsons (2 1/2 and 9 months), etc, etc, etc. But, I've totally gotten over stares and talk right up to people which I find makes it easier for them to see me as just another adult with a brain (even if somewhat damaged!) I still work full time though its getting VERY hard. It helps that I work at home 2 days/week and I do graphic design which, un;like this keyboarding, is not so hard for my hands. Its also very interactive.

Enough on me. Good luck! If you are diagnosed with MS, find a good support group, but DON'T let it totally control your life. Until then, try not to torture yourself and think about your symptoms as little as you can. If they keep up, try to get all the tests you need. Keep pushing.

good luck

[ellenc]

In my search for other causes of these symptoms that I have described, I was sent to a rheumatologist, who has ordered an EMG. She says it would look for peripheral neuropathy.  I know very little about PN - does it progress? Do my symptoms fit? I am not diabetic, etc. I'm also wondering if a compressed nerve could casue sensations in both feet AND hands.Doctor, is this a possibility? Also, could sensations in the hands  AND feet be caused by a spinal lesion, or would these have to originate in the brain to be in both places? Sorry for all the questions,but I (like so many others, it seems) am desperate for answers. If any one could respond, I would be so thankful.

[sally]

To Kim, Jo and Ellen,
You three sound like different cases, but all understandable and naturally worried.
Whether or not you have MS, well time will certainly tell. You may need to learn patience along with determination. If you feel you are not being taken seriously, and not enough tests are being done, consider an evaluation at a university medical center. But if you have had scads of tests (and you obviously know which ones I'm talking about) and still have no answer, try to be patient for a while. If it is MS, it will eventually make its presence clear.
I know, I went through nearly two years of symptoms and tests, as well as a couple of doctors who either brushed my concerns off as simply anxiety, or seemed unwilling to commit to a diagnosis.
I finally got to a point where the only thing that made sense for me was to go to UCLA and see a neurologist there. I decided that if I was unable to get a diagnosis, then I would simply have to learn to live with these symptoms until they got bad enough to help define a diagnosis.
That was five years ago. I did receive a diagnosis of MS. It seems like a million years ago. The neurologist said that I did not have a classic case of MS, which made my diagnosis more difficult. (It appears my disease course has been progressive from the start, which is uncommon.)
I have rapidly gone on to more serious problems and look back on the tingling/numbness sensations almost wistfully. (I do have them, but compared to my other symptoms, they are quite benign and non-disabling.)
The most important consideration in getting a diagnosis early is to start one of the "A-B-C" drugs as soon as possible, as they now think it starts helping to prevent progression in relapsing-remitting MS very early in the disease process.
But, try not to obsess over your symptoms. Try to live one day at a time, even though that sounds hackneyed. And use your common sense when you feel you need to take your "search" further.
Good luck.

[goodgal31]

Hi Sally,

Like all the other gals above, I to have had the same sensations.  Been through a battery of testings, mri scan, blood work, neuro exam, all normal so far.

Can I ask how your definate diagnosis was made?  Was it through an MRI, spinal or clinical?  What were your initial symptoms?  I"ve been steadily feeling "funky" for the past 4 months and was told not the normal patern of MS and my neuro exam was normal to.  What are your thoughts, we all above would really like to understand whats going on with us!  Thanks Sally.

[Kelly to Dr. KDK]

I'm very worried and really need some reassurance.  I have some strange symptoms such as numbness and tingling in hands and feet, a cold and/or wet feeling on my calves, muscle cramps (mostly in calf area, both legs), muscle weakness, neck pain, trembling, and a strange vibrating sensation, usually when I wake up in the morning but sometimes jerks me awake when I am just falling asleep and keeps me awake.  I had all these things and it was attributed to severe anxiety, then it all went away (or at least got much, much better) for about a month.  Then I got a cold/flu virus and it returned.  Along with the symptoms came the anxiety that there is something really wrong.  Do these symptoms sound like a neurological problem?  I had a CT scan a little over a year ago, which was normal.  Also had a lumbar puncture, but they were looking for causes of severe headaches so I don't think I would have been tested for MS.  I also have had ANA blood tests and thyroid function tests, which were normal.  My doc doesn't want to do an MRI because she feels it is an anxiety problem.  Do you agree?  I know it's hard to say over the internet, but I do you feel that my symptoms warrant a neurological exam or MRI?  I'm frustrated because my doc won't do one.  I don't feel that it should be assumed my problem is anxiety until a physical problem is ruled out, but she feels sure that it is not a neurological problem.  Thanks for responding.

[Kelly to Dr. KDK]

Thanks so much for your post.  It is so reassuring to hear about people who have similar symptoms and it turns out to be anxiety.  I will take a dx of anxiety over a neurological disorder anyday!  I was wondering if you would like to correspond by email?  I would like to talk with you more about this if you would be willing?  My email address is ***@****.  Thanks for taking the time to write!  And also to the doc, thanks for answering, even though I butted in on somebody elses post!

[Carol55]

Dear Jo,
If it will make you feel less worried, I went thru the exact same thing you are going thru last year at this time.  It was anxiety all the way.  Even the vibrating sensation up my back and neck.  That was happening almost every morning when I'd awaken.  And the jerking upon falling asleep is something I had too.  All the others symptoms you mentioned, I , too experienced.  I refused to believe it was nerves/anxiety.  Muscle twitches, weakness, the trembling/shakiness, too.  My neurologist checked me out just like you did, and I took .25mg. Klonopin a.m. and p.m.  It was a God send, settled me right down.  WEaned off of it after about 6 months, and things have been fine since.  I know you will be doing just as well, once you realize it is nerves and get the right medication to get you over the rough spots.  My big fear was that I had Huntingdon's Disease, as a family member of mine has it and was in bad shape at the time of my own symptoms.  Nerves can play funny tricks on you.  Keep your chin up.

[CCF Neuro[P] MD, RPS]

Dear Jo:

If you have definite muscle weakness on neurological examination, I would probably get an MRI or CT.  But, you physician knows you best and has done many examinations on you over the years and is the best judge.  If he/she did not pick up anything worrisome for CNS disease, then likely MS is not the cause of your symptoms.  If you in doubt about the diagnosis, then seek a second opinion.

CCF Neuro MD

[ellenc]

Thank you so very much for your reply . Can you just clarify one point? Did you mean that in order to have sensations in both my hands and both my feet I would have to have two brain lesions as opposed to spinal lesions? Does this mean that hand/feet sensations originate in the brain and not the spinal cord? Thank you.

[?????]

I have all the same symptoms as both Julie and Jo.  I had all of the tests and all were normal.  My Doctor also says it's anxiety.  I am a mess mentally.  I am going to see a shrink next week and try to get this straightened out in my head.  The mind is a powerful thing and even though hard to believe it can cause all of these physical symptoms, it can.  You have to trust God, and pray for strength to overcome this.  I hope I am strong enough to get over this and never ever do it to myself again.

[CCF Neuro[P] MD, RPS]

Dear Ellen Carroll:

I would agree with your physician that your symptoms would be very unlikely due to MS.  Most of the time the normal MRI of the brain is due to spinal cord involvement or misreading of the MRI.  Most of the time the symptoms of MS are asymmetric, especially at the beginning.  Sure they can be symmetric as in your case but if so, the MRI would usually be positive as this would take two different lesions in the brain.  If you ask your physician, he/she would probably due a spinal tap to look for oligo clonal bands, incr MBP, kappa chains.  Although, this too can be normal in some early cases of MS.

Sincerely,

CCF Neuro MD

[Ellen Carroll]

I am sorry to tag onto this posting, but I have been trying in vain to post for weeks. I am hoping an MD will answer me.
I am a 39 year old woman. 6 years ago I had bi-lateral tingling in my hands and feet, and vertigo. An ENG showed viral labrynthitis, and a brain MRI was clear, as well as a neurologivcal clinical exam. No explanation for the tingling was ever given. Last October I experienced renewed tingling and numbness in all extremities. Two neurological clinical exams were perfect , as was a brian MRI, and SEp's, audio evoked potentials, and VEP's.The neuro I saw assured me that this is not MS. However, I am aware of cases where MRI's miss lesions, as well as cases that take years to diagnose. I amworried sick that this is, indeed, MS and I am not being treated.
I have also recently been diagnosed with a thyroid nodule. and have been placed on synthroid. My thyroid gland was enlarged, however, my endo told me that it could not be causing these symptoms. COULD the thyroid be the casue, or should I pursue the MS routs, OR could it be something else?? Please help, this has ruined the last 7 months of my life. Thank you.

[CCF Neuro[P] MD, RPS]

Dear Kim:

Your MRI and your clinical symptoms do sound like MS.  It might be wise to have your MRI looked at by a neuroradiologist to see if the white matter changes are of different ages.  That would be the clincher.  The low to absent reflexes can be due to other things, like low thyroid or it can be due to you being a normal variant and just having low to absent reflexes.  Did they try and elicit reflexes while having you perform another task?  This would be especially non-relevent since your involvement at this point is sensory and not motor.

I hope I am wrong and you don't have MS, but if you do, then by all means go the medication route.  The newest medication for MS is likely going to come on line soon, Mitoxantrone and should give added benefit to the interferons.

Sincerely,

CCF Neuro MD