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Avatar universal

Doubting my MS diagnosis

Hello,

I'm a 25 year old female who was recently diagnosed with MS in January following a single episode of numbness that was especially prominent along the distribution of the median nerve but occurred to some extent along the entire right side of my body from the shoulder down. This numbness began just after I started having symptoms of a severe case of tonsillitis. The numbess persisted after I recovered from the tonsillitis so I went to see a neurologist where I had a MRI done. It showed a lesion at C4 and a couple of small lesions in the brain. There was no evidence of any previous demylination events. I was diagnosed with MS based on this and started on copaxone. I demanded further testing and had visual evoked potential performed and CSF analysis. The visual evoked potentials were normal. My CSF showed no myelin basic protein, no oligoclonal bands, and an IgG synthesis index of 0.64. My neuro called this IgG index "elevated". However, when I look it up I find that it needs to be greater than 0.7 to be consistent with MS. What do you think? I realize that MS is a hard diagnosis to accept but I can't help but think it's being based more on demographics than anything else. My neuro won't even entertain post-infectious myelitis because of my age even though I had a definite history of preceding infection. Of possible interest, I've started getting fevers and rashes over the past couple of weeks but my neuro is very dismissive of them. Am I in denial or is my sketicism warranted? Thanks in advance for your time.
30 Responses
Avatar universal
I cannot give you a formal medical opinion, but if you are in doubt of your diagnosis I would definetly get a 2nd opinion - treatement with copaxone or other MS treatments is expensive and associated with side effects. There are mimics of MS whoch shouild be thought of and excluded before a diagnosis is made, eg vasculitis, sarcoid, Lyme, stroke

A single clinical event (termed clinically isolated syndrome, CIS) of numbness and an MRI with some spots that are not specific for MS (I have not seen the MRI scan so cannot speciifcally comment on your spots) is not diagnostic of MS. A diagnosis is made based on the principle of demyelinating events disseminated in space and time.

According to the McDonald criteria (the best definition for MS we have), if there is one isolated clinical event and objective evidence of one lesion (presumably the MRI lesion at C4 in your case, I cannot comment on the likliehood of this lesion causing you symptoms without knowing where it is), then you must also have  evidence  of dissemination of MS lesions in space and time

Dissemination of lesions in space must be either a positive CSF (oligocloncal bands or raised IgG index) or MRI must show the following:At least three of the following MRI criteria must be met:
1. One gadolinium-enhancing lesion or nine T2-hyperintense lesions if there is no gadolinium-enhancing lesion
2. At least one infratentorial lesion (below the brainstem)
3. At least one juxtacortical lesion (in the brain itself)
4. At least three periventricular lesions (in the brain beside the ventricles)

Dissemination in time is defined in this scenario as either a second clinical events or the following MRI criteria
At least one criterion must be met:

1. If MRI is more than 3 months after clinical event, then a gadolinium-enhancing lesion (contrast) at a site different from the original clinical event is sufficient; if there is no gadolinium enhancement, then a follow-up scan is required (usually > 3 months later). A new T2 or gadolinium-enhancing lesion on this second or subsequent MRI fulfills the requirement.
2. If first MRI scan occurs less than 3 months after the onset of the clinical event, then a second scan > 3 months later showing a new gadolinium-enhancing lesion fulfills requirement. If no gadolinium enhancement is seen at this second scan, a further scan not less than 3 months after the first scan that shows a new T2 lesion or an enhancing lesion will suffice.


As you see there are specific criteria for diagnosis (strictly speaking they are guidelines for diagnosis), I do not know if your case fits this or not, only you and the doctor doing you will be able to know

good luck
Avatar universal
I would have my doubts, too.  Here are links on the diagnostic criteria for MS:

http://www.clevelandclinicmeded.com/diseasemanagement/neurology/multsclerosis/table1ms.htm

http://www.mult-sclerosis.org/DiagnosticCriteria.html

The 2nd is an MS site with a lot of info.  I was misdiagnosed with MS and had a lot going on and 3 lesions.

Here is a support group, they are very friendly and would help with any question (mind you, they are not drs.):

http://health.groups.yahoo.com/group/FriendsWithMS/

Good luck!
Avatar universal
I have read this question and a comment you posted on a previous question. First, get demographics out of your mind. There are correlations with everything ( i.e. "coffee drinking increases risk of heart disease", "an aspirin a day keeps the doctor away", "eat less fats , you decrease your risk of colon cancer".
Your neurologist earned his title with much hard work. He doesn't make decisions lightly. I am sure he feels he needs to watch you closely. Because he made a MS diagnosis doesn't mean he will forever stick to it forever, if other factors start to warrant a change in thinking. Get a second opinion to put your mind at ease. Be wary of Lyme, etc...as it is not all that common.  ( as one might believe reading this forum ) You are very young and time can change everything ( including any incorrect diagnosis ) . Your physician is not wasting time in circumventing treatment when it possibly counts the most ( i.e , you possibly may have changes in your spinal fluid analysis later. ) Let's see what the forum MD has to say. Relax. You are so young.
Avatar universal
demographics are of some importance and MS is a disease of the 20'2, you are near the hallmark age for early/new MS. I respectfully disagree with the laste comments. Lyme is not uncommon and it is not a rediculous claim otherwise it would not be so commonly noted on MRI findings. I suggest that you look at canlyme.com and go from there.

It may very well be MS, but even if something is rare it is important to educate yourself on other possibilities. The latter commenter also does not know your neurologist and there are quacks in every field. I do not know him either, thus I do not have an opinion in that regard.

Again, this is your body and your life and it is not strange that you have concerns. It is also not easy to "relax" with the multiplicity of factors (non clinical) that surround these types of diagnoses.

Regards.
Avatar universal
Thus, the second opinion.
Avatar universal
Jmcc, you apparently have some Lyme knowledge.  Please see my post under "buzzing in legs" dated 3/14/06.  I would like your opinion.  

I have thought about MS as well.  However, one neurologist said I was "too old" to get it. Another did not test the spinal tap for MS because she said she did not "think" I had it.
Avatar universal
Did your fever and rashes start after beginning the MS treatment?
Avatar universal
Hello fellow basic sciences person. I'm assuming you already have your Ph.D.? I'm at the very beginning of a M.D./Ph.D. program so I have a LONG way to go.

I'm just conflicted about my diagnosis. On one hand, I don't want to stop taking the Copaxone and then have another episode a sometime in the future and go "Oh ****!". One the other hand, the medication is costing my insurer $1500 dollars a month! I've done quite a bit of reading on the topic and know that I have some of the "red flags" that suggest another condition that may be mimicking MS. I don't doubt that I have something inflammatoy going on I'm just not quite convinced that it's MS having had only one episode of neurological symptoms. I'm thinking of possibly seeing a rheumatologist. Perhaps they'll have a more open mind?
Avatar universal
Hi JMcc--

Please read my post to the forum about need more advice from doctor about ms symptoms..please tell me what you think about my case.  I have finally made a neuro appt. and am scared to death of having ms...ive been fineup to this point without a dx, but i am having terrible anxiety now, thinking i must have it, what else could it be? also, have you done any research on the meds for ms?  I would be afraid to take them, i think they are toxic.

Also, my internist said lyme symptoms do not wax and wane..is that true?

Avatar universal
Hi, thanks for responding..i live in NJ.
Avatar universal
First of all your symptoms are unclear and are most like variable such as a combinatory effect going on. If there are no lesions your case for MS is unlikely. After all they are what causes the demyelination that causes such deficits.

What area do you hail from? Your age is of some importance but if we are talking 18 years that would put you in the prev realm. Yes your physician could be wrong, he/she is not God. But you do not want to go looking just for MS. If you can name off your symptoms I will tell you what I think, as well if they relapse rem.

Regards,
Jmcc.
Avatar universal
I am going to be 39 next month and have had ms-like symptoms for the past 18 years.  15 years ago i was told i did not have ms with normal mris and spinal tap.

i did not belive the dr...i thought i still had ms mainly because i was so anxiouos about ms, i developed tingling, pricking, and strange sensations, that wouldnt go away.

Ive lived pretty well the past 15 years not knowing whats wrong with me...i havent had anything terrible happen..just some vision problems and mild symptoms...

But now, ive become obsessed once more and i finally did make an appt. to go see an ms specialist. I am very scared, but do i have a choice??

If you want answers..go get a second opinion, and go to the best dr. around...go to an ms specialist at a university hospital if you can...go to someone with much experience in diagnosing ms..not just any neuro.  

Also, what other disease were you looking at that mimicks ms?


Avatar universal
Pinky,
  I specialize in org chem. I would say that you should certainly see other people. I could refer you to a good internist who specializes in Lyme if you tell what state or area of the country you are from. From there, if Lyme is out of the question you can move on to the next step. I completely feel, based on what you have written, that you should not stop at an MS dx/ Quite frankly, no one should.
  How many lesions do you have brain/spine? Other tests? Did you read your MRI report? Science is wonderful but so is the internal voice. I really do not think that you should stop here, something is certainly driving you.
   I have made it a hobby to study neurology and have many neurolgist friends. If you feel comfortable saying what that other condition is I possibly can help. According to what you have written my symptoms have been much worse and I have 5 or more non-specific lesions, had acute transverse myelitis, and still have no dx of MS. I come from a Lyme prev area.

Good Luck!
Avatar universal
Maybe you could also show your neuro friends my symptoms???

Do you know if ms has been mild for a number of years..in my case 18, that it is more likely to stay that way?

And alos, what have you read about the drugs to treat ms?? Are they toxic??? I know there are so many side effects. Should one take the drugs if they have a mild form of ms for a long period of time?

I am almost 39, female.

THANKS!
Avatar universal
Yes I will mention your symptoms but w/o clinical proof such as MRI they will say the same thing.
Yes it is possible to have silent or asymptomatic MS and my understanding (lay) is that MS develops differently for each person, however it is more likely to stay silent, calm, or asymptomatic.
As far as the drugs go I have not done so much research on them. There are diff opinions in this regard. I will say nothing about how I feel about the FDA. Natural docs say no, neuros say yes. This is something you will have to research and decide for yourself. In my personal opinion (lay) I would not do it if your symptoms are not debilitating.
Again, do you do outdoor activities such as hiking or gardening, especially over the past 18 years?

Regards,
Jmcc.
Avatar universal
What medicines did you take for your tonsillitis, that released the symptoms in the first instance?
Do you remember the antibiotic that you took, if any?
Have you been taking lately some other drugs like inmunosuppressors, statins to lower the cholesterol, or the like?
Avatar universal
hi jmcc-
please read my posts to doc on this forum from 3/7 and 2/22.
I am almost 39 yrs. old, female.  I have had symptoms which started with a bladder infection, when i was 21.  

I have nothing debiliating at all.  I have done aerobics and worked out using tredmill, elliptical, nautilus machines over the past 16 years without any problems except my toes will sometimes get numb on the elliptical.

I have severe mental stress right now from marital issues which caused me to investigate my symptoms (tingling, burning, pricking, feelings of something dripping under the skin) which flared up about 1 month into my stress and has waxed and waned since.  i had the same kind of flare up with symptoms 15 years ago when i convinced myself i has ms and couldnt deal with it.

My mris and spinal were from 15 years ago.  Do you think i need to get other ones done? Is it better for me to wonder what this is and chalk it up to unexplained rather than trying to go to another ms specialist or neuro?  And should i seek an ms specialist or a regular neuro?

sometimes i think its better not knowing...
also, do you have any knowledge on whether ms will stay mild?  i think you answered that already, but im not sure.  
i know there are no guarantees, but in my case are there statistics that if your female and young at onset isnt there a better chance? Also, how you do the first 5 years..isnt that an indicator?

Thanks.

Avatar universal
Of the 80 symptoms of Lyme listed in your previous post, all but #20  are typical (and many more), well described, and absolutely common in people that suffer a delayed reaction to a fluoroquinolone antibiotic. These reactions take place some months after taking the medicine, and last for some years if there is no reexposure, or become permanent if there is. There are many organisations that have listed those symptoms, their evolution and all details.
This highlights how difficult is sometimes to reach a solid clinical diagnosis of someone's ailments when they mimic multiple sclerosis, sj
Avatar universal
Can you refer me to those sites? Anything with the heart? I have dx with the above mentioned.

Regards,
Jmcc.
Avatar universal
If you don't mind me asking, what were you symptoms with transverse myelitis?  I'm being treated for lyme right now and think I may have had transverse myelitis twice.

Thanks.
Avatar universal
also, I did not take fluoroquinolone antibiotic to my knowledge before everything went bad.
My story is weird. Many of those symptoms were around for a few years.
Feb of last year woke up with topical numbness from the waist down and eventually had pruritis. After 3 weeks subsided, then came back a week after worse with gait, constipation and many of the other symptoms. Neurologist (80 yrs old) did clinical work up (1 visit) and said it was Acute Transverse Myelitis. Said there was another bout it was MS. (According to lit it is not that simple). Symptoms lingered over summer and developed into low trunk numbness, paraethesias, more pruritis, and many other things. Have never been debilitated. No optic neuritis, for extreme fatigue.
Feb of this year I demanded an MRI of the brain and found 5 or more non-specific lesions (both sides) that are suspicious of MS, Lyme Disease, or Vasculitis. Family doctor jumped right on MS.
I do not know what to think. I father recently died of Athero sclerosis (hardening of the arteries), do maybe a vasc? Sexually perm past (homosexual) and thus I do not know if tertiary syphilis (which could account for ATM) would cause brain lesions/spinal lesions, etc.

LymeInternist says poss Lyme and states lesions and symptoms could be accounted for in Lyme.

Your thoughts.
Avatar universal
Hi jmcc and thanks for your response.
to answer your questions...i live in new jersey..central new jersey and i dont hike or garden much.  There are ticks in the area...one town over there are many deer, however, i think it highly unlikely in my case.  I would rather have lyme than ms though!

Anyway, my mri's of brain and spine were normal as was my spinal tap.  the first neuro (he did the mri's) thought i still might have ms because of my age at the time (24)and he saw one babinski reflex.  But i idnt like him and went to ms specialist in ny and he was the one who did the spinal tap, blood work , physical exam and found nothing(no babinski)and thought i didnt have ms.  Can you have symptoms before lesions show up on mri?   i had symptoms for 3 years prior to tests.  Also, one year earlier i had the chicken pox...after it was clearing up, i had a bout with my vision....it was cloudy in one eye..a typical sign of optic neuritis, however the eye dr. and ms specialist both said it could have occured due to the chicken pox virus itself.
The cloudiness cleard up after a few days.
Avatar universal
Anyone that has taken a fluoroquinolone antibiotic, specially high doses or long treatments, can develop all the symptoms related in your post. Yes, the 80 in all, and more. One very specific damage caused by the fluoroquinolone antibiotics is HEART LESIONS, namely QT-interval prolongation, arrythmias (pernicious sometimes), abnormal working and many different cardiological pathologies. Some people need the implantation of pacemakers. Others die for this reason, although nearly always the blame is put on something else.
Please note that this injuries are not idiosyncrasic. Are a class effect. For those long treatments, the reaction affects nearly a 100% of patients.
The most critical peculiarity of these medications is that the reactions on people that are not allegic or hypersentitive to them, emerge clinically some weeks or months after the cessation of the treatment. The response is more acute and inmediate for people that are specially senstive to these drugs.
The best source of information, both in terms of  compilation of medical research and from the victims point of view is the site:

www.fqresearch.org

(with which I have no relationship at all; I just point it out in case it can be of any help for you)

Another site to see a practical approach to this epidemic issue is:

www.fluoroquinolones.org

I hope you eventually find a diagnosis, and start a firm path towards recovery.
Avatar universal
Do you have brain lesions? Do you have spine lesions?

TM symptoms develop rapidly over several hours to several weeks. Approximately 45% of patients worsen maximally within 24 hours (Ibid.). The spinal cord carries motor nerve fibers to the limbs and trunk and sensory fibers from the body back to the brain. Inflammation within the spinal cord interrupts these pathways and causes the common presenting symptoms of TM which include limb weakness, sensory disturbance, bowel and bladder dysfunction, back pain and radicular pain (pain in the distribution of a single spinal nerve).

Almost all patients will develop leg weakness of varying degrees of severity. The arms are involved in a minority of cases and this is dependent upon the level of spinal cord involvement. Sensation is diminished below the level of spinal cord involvement in the majority of patients. Some experience tingling or numbness in the legs. Pain (ascertained as appreciation of pinprick by the neurologist) and temperature sensation are diminished in the majority of patients. Appreciation of vibration (as caused by a tuning fork) and joint position sense may also be decreased or spared. Bladder and bowel sphincter control are disturbed in the majority of patients. Many patients with TM report a tight banding or girdle-like sensation around the trunk and that area may be very sensitive to touch.

Recovery may be absent, partial or complete and generally begins within 1 to 3 months. Significant recovery is unlikely, if no improvement occurs by 3 months (Feldman, et. al., 1981). Most patients with TM show good to fair recovery. TM is generally a monophasic illness (one-time occurrence); however, a small percentage of patients may suffer a recurrence, especially if there is a predisposing underlying illness.

ATM is usually what Lyme people will get. If you have it it may be a mild form such as what I had.

Can you please tell me about your Lyme and how you found out and if they thought that you had MS or something of that nature? Do you have brain/spinal lesions?

Good Luck!
Jmcc.
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