MS?

[Vaz]

Dear Dr.,
I am a 29 year old woman and I have been experiencing weird symptoms off and on since the age of 16! When I was that young I clearly recall complaining of my legs feeling like jello and then it would go to feeling as if I were trying to walk through cement. I got better for a few years. Also my parents took me to a MD then who said he didn't know what it was but I'd be ok.
Beginning early in 1997 I began having clear cut patterns of periods of time when I would feel different things that would last anywhere from a few hours to days to weeks and then it would all just go away as quickly as it came.
My toes tingle at times. I have terrible burning sensations in my inner thighs to across my back to my scalp! It feels as if I am sunburned very bad from my head to my legs. The burning will last as long as weeks and it is very painful. It is usually associated with a weird feeling around my mouth as if I am drooling,yet I am not. Also incredible fatigue. My hands shake when I am reaching and sometimes it isn't bad but sometimes I can not even sign my own name. My arms gave out once and I dropped my daughter,thankfully she landed on a soft couch and was not hurt.
My legs still feel week and again will also feel like I have cement shoes on or something. If I am riding in a car and we stop,sometimes I think we are still moving.
I have had optic neuritis that left a pupillary defect and optic atrophy in both eyes. I have hyperreflexes.
I saw a neurologist who began some tests. My brain and cervical spine MRI were normal. All labs for autoimmune diseases were normal. Vitamin deficinacy studies were all ok. My neuro said I might have mild MS despite clean MRI'S,but no meds were started. I never had a spinal tap. I am scared of that!
What do you think? My symptoms were documented during a brief hospital stay last year. My biggest problems are the fatigue,burning,and now terrible problems with my GI tract. I would appreciate your thoughts on this.

[Katherine]

I'm sorry if you feel that I have been using this site as an alternative to regular medical support.  I have been seeing 2 of my doctors on a regular basis, went to the neurologist and will continue to retain him until this is over, had the EP's done and am seeing the therapist on a regular weekly basis. I was simply seeking a second opinion and perhaps a better explanation on what this could be.  Just concerned as is everyone else using these forums.  I am fully aware of the fine print following the forum and did not ask you to replace my medical support team.

Katherine

[CCF Neuro[P] MD, RPS]

Dear Katherine:

Demyelination would be expressed as muscle spasticity, increased deep tendon reflexes and eventually muscle contractures and loss of function of the muscle.  There would be changes in the white matter on MRI and CT.  It is constant and if the process is progressive, it worsens over time.  This would depend on the etiology, viral infection would be static or no change, MS would be progressive.

Kathrine, this is not a medical alternative to seeing your regular physician.  We cannot be dictated to answer a question.  Medical care cannot be performed over the internet.  We do this as a service and it is not be thought of as a substitute for seeing your own physician.

CCF Neuro MD

[Please help!]

Please see posting above!  I need some answers.  No one really seems to be too concerned.  I thank you in advance for your caring and prompt replies. This really is such a great site.
Katherine

[Katherine]

Hi again Doctor,

Are you suggesting that the headaches are not occipital if they respond to over the counter NSAIDS??  What could they be then--could it be due to strained neck muscles, which is what the suggestion is?  also, You never did explain the manifestation of demylination??  How does it present, is it constant, does it come and go and does it progress, does it cause pain or only discomfort??  Would the other neuro tests give a clue to demylination and the the EP confirm it, or is the EP test the conclusive test for Demylinations?

Thanks,

Katherine

[CCF Neuro[P] MD, RPS]

Dear Katherine:

They are identical.

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Devics is a form of MS that involves only the optic tracts and spinal cord.

CCF Neuro MD

[What is Devic's?]

You posted in a response that Devic's is MSlike.  What is Devic's (or is there another name for it)?

[CCF Neuro[P] MD,RPS]

Dear Kathrine:

Occipital neuralgia is a type of migraine headache.  All medications have interactions.  Usually, OTC medications can be used with Zoloft without many interactions, but ask your doctor before taking other medications.

CCF Neuro MD

[Katherine]

Hi again,

Thank you for responding so quickly.  I'm still not sure what the difference between occipital neuralgia and cephalgia-which is what you stated originally.  Can you advise, please??

Thanks,

Katherine

[Katherine]

Dear Doctor,

I have not had a MRI, the last time you stated you didn't think it would show anything, and probably not necessary given the other parts of the neuro exam.  What is occipital Cephalgia?  Can over the counter NSAIDS be used with Zoloft?

Is is always one Neuro that responds to this site or are there several of you?

Thanks for your time.

Katherine

[CCF Neuro[P] MD, RPS]

Dear Kathrine:

I really think that you need to sit down with your doctor and talk over your symptoms.  The questions you ask should be answered by him/her as they need to know what type of symptoms you are having.  Yes, your headache might be an occipital headache but the fact that they respond to regular over the counter NSAIDs would be a point against them being occipital cephalgia.  With a normal exam, as previous stated in your previous posting and length of symptoms it would be doubtful that you have MS.  The evoke potential examination can tell if there is slowing in the pathways examined, a clue that demyelination has occured.  However, usually the MRI would have picked up a demyelination unless it is very early in the course of the disease.  Yes, your symptoms might be caused by anxiety.  I cannot tell you much as I have not examined you, taken the history and seen the work up studies.  I really think you need to see your doctor and have a good sit down conversation considering your symptoms.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Betty:

Sorry to hear about your B12 and porphyria diagnosis.  I am glad that it wasn't MS.

Sincerely,

CCF Neuro MD

[To Betty/From Maureen]

Betty, I would like to e-mail with you.  Contact me at ***@****  Concerned about your diagnosis.  Maureen

[Katherine-Please respond]

Hi again,

Please answer my questions-from March 30/00. To add to my list of  questions, last night I had the weirdest sensation yet-It was what started as a dull burning sesnation in my neck and then rode up into the back of my head-it almost felt as though it were some sort of cramp that quickly (after only a few seconds)stopped and left me with a tingly warmth that spread into the back of my head-the occipital part and down around my shoulder blades.  Could this be occipatal headache in nature, caused by stiff muscles in the neck, loss of lordosis or the narrowing of foramen at the C4-C5 level, that I speak of on post of March 8/00? Could this still all be related to the anxiety? I am at my wits end.  Please shed some light on this.  

What sorts of symptoms would demyliation present?  Could demyliation be picked up withother neuro tests? (NCS/EMG and physical or is it only done with evoked potetnials?)  I've had all of the above done and am waiting on the EP's, but doctor says nothing found in his exam???
Thanks,

Katherine

[Betty Powell]

Thanks CCF,
   I am just glad to have a DX after years of symptoms..they are now trying to get a treatment plan together now..At least porphyria is controllable with proper diet and avoidance of certian things and treatable in an acute attack...I just wish they could control the Neuropathy better. I have not had confirmed neuropathy on a NCV test but the doc says thats what this is is PN from the increased porphyrins in my system doing nerve damage...Thanks for you reply..You are great...

And Emily, I hope Your optic neritis subsides soon, and that you get answers that you are searching for.....Take care and all the best to you...

Hi Maureen I sent you an E-mail, Hope all is well with you..
Best to all
Betty

[Betty Powell]

Thanks CCF Doctors,
    I have been DX'd since Posting to you with AIP type Porphyria and B-12 deficent as well.....Thanks for your response to me it is very appreciated....Thanks  Betty

[Katherine-Please respond]

Dear Doctor,

I apologize for responding here, however, it is impossible to post on this site.  I originally posted under "Is this Stress, Somatic or Neurological" on March 8, 2000.  I have now had my Evoked Potentials tests done, but with no results as of yet, and the technologist was tight lipped of course.  So I have to wait to get those results, but I wanted to add that I have been away on vacation for a week and had absolutely no symptoms whatsover. Now that I am back I have been feeling the neck/head ache and burning as well as a little across my shoulder blades-intermittently.  I am now currenlty on 20mg. of Zoloft once per day.  Do you still think this is anxiety and not some other worrisome neurological entity?  Also, can occipital headaches cause numbing and burning or could this be from neck strain?  Can you describe the symptoms of occipital headaches? (Mine start at the base of my neck, mostly on the left side-it is more of a dull ache as opposed to actual pain-however when I use Advil it takes care of it).  Should I be using Advil when on Zoloft?  I might add that the parastesia is all but gone, except for this issue occasionally and most notably in the morning.  Any advice you can offer would be greatly appreciated.  once again this is a super site, with a lot to offer.

Thanks,

Katherine

[CCF Neuro[P] MD, RPS]

Dear Jeannie:

MS is a diagnosis by clinical exam.  There is no single test that we can do that absolutely says a patient has MS.  Since your symptoms have been going on for 7 years the likelihood that the neurological exam has not given the neurologist the diagnosis makes MS less likely.  Although optic neuritis is the most common initial symptom of MS, there are other things that cause optic neuritis and more than 50% of defined MS patients did not have optic neuritis as their initial symptom.  A constant course of relapsing and remitting symptoms should probably give defined lesions on the MRI and CSF analysis.  I would think that MS is not the most likely cause of all your symptoms.  Yes, lyme disease can be a mimic of MS.  Most, but not all, cases of lyme disease are treated and cured by antibotics.  

Most neurologists would not treat symptoms.  Maybe a second opinion will help in defining the problem.

Sincerely,

CCF Neuro MD

[Jeannie K]

Dear Dr.
Quick question - I am being tested for MS as all other tests have come up negative and have MS-like symptoms.  Is is possible after all the neuro tests have been done and come back negative or inconclusive (as they have in the past) that one could have MS.  I have had many 'attacks' in the past 7 years, with no real answers.  This last attack is so severe that i have optic neuritis, difficulty walking and talking, no coordination, facial pain, etc.  Had advanced LYME disease about 6 years, treated, but never really fully recovered.  Could the LYME possibly mask MS?

MS first suspected 7 years ago in Germany, all tests (in hospital) proved "inconclusive".  Said it could be beginning of MS, nothing they could do for me = go home. Do neurologists need conclusive proof that is MS or can they treat on the basis of symptomatic results?  

Thank you for your time and input
Jeannie

[CCF Neuro[P] MD, RPS]

Dear Emily:

I am very sorry to hear about your bout with optic neuritis.

CCF Neuro MD

[Emily....update to CCF Neuro since my po]

Well as my luck would have it, I have been hit with ANOTHER attack of Optic Neuritis. This makes round 2. I saw my neuro. Actually my dad drove me since I couldn't see much out of my right eye to drive but can see to type and do other things. Just looks like I am looking thru cotton vision! Everything looks cloudy and hazy and distant out of my right eye.
He is pretty confident at this point I have MS though. I am not real happy about it but atleast I know it is treatable and will deal with it. Thanks for your input this am. You are the greatest!!!!!!!!!

[B.E.]

Hi Dr,

on the topic of MS, Do the majority of MS'rs have lessons in the brain VS the spine?  What type of symtpoms would spinal MS have?

[CCF Neuro[P] MD, RPS]

Dear Betty:

Sorry to hear about your symptoms.  Based on what your telling me, I don't think it sounds like MS.  CNS demyelination would not give you asymmetric clonis in the knees but essentially normal in the ankles.  MS lesions are not that fine tuned.  It might be spinal cord, but again the knee deep tendon reflexes being clonic and ankles being normal is highly unusual.  It sounds more like B12 deficiency or some other entity that is systemic.  Although the asymmetry might indicate a lateral cord lesion, but one should see some sort of muscle weakness if anterior horn cell or spasticity in the lower extremites if lateral spinal cord.

I am sorry I can't help you much.

CCF Neuro MD

[Betty Powell]

To CCF and Emily,
  I have tried to post here many times in the past and cannot ever get the chance to do so. I am 39 with similar symptoms. I have had spinal and head MRI without contrast due to allery all normal..No spinal...I get numb and off balance and have eye troubles and all sorts of the same symptoms..B-12 low normal,Ana Borderline, NCV normal other than conduduction impulse problems due to very cold hands and feet..No EMG,did not feel needed.Have 3 and 4+ knee jerks and 1 and 2+ ankle jerks on various exams. All other aspects of the neuro exams were normal.
Yet I have some very bizarre neuro symptoms, Weakness(percieved not actual loss of strength),Numbness,Pins and needles,painful at times especially bottoms of feet and hands,Twitches(mild),Burning sensastions like being dipped in icy hot around waist back and face. If I sit long legs and buttocks go to numb and tingle. I drop things get foggy headed and lose concentration very badly. Fatigue is awful..
Right now they think I may have porphyria and I have seen a hepatologist and am awaiting test results..I had some elevated porphyrin levels in 24 hr urine but the bllod enzymes are normal. He indicated there are subtypes that cause neuro symptoms but do not have decreased enzymes...So who knows...

Anyway CCF any opinion would be greatly appreciated and EMILY you are not alone. Take care and best of luck to you
Betty Powell