Where should I go now??

[Andrea`s_mommy]

Hi, I`ve posted in the past and have had some more tests done since, so I wanted to ask your opinion on where I should go from here. I started having numbness, tingling, mild intermittent eye pain in the right eye, fasiculations, and tendon tightness in the extremities 9 1/2 months ago, after my 1st baby was born. I seen a neurologist a month after it began. He performed a brain and c-spine MRI which were normal and a nerve conduction test and blood test which were normal, that was 7 mos. ago. I seen a 2nd neurologist after the first one. He did a heavy metal blood test which I think came back normal. He said he would call if anything came up w/ it, and he didn`t. He did a Somatosensory Evoked Potentials lowers test on me, which came back normal also. My symptoms are still w/ me, but slightly better. He said he wanted to monitor me for a while. What do you think I should do now? How would you diagnose me? Thanks....

[Andrea`s_mommy]

Hi lmar6282! When did your symptoms start?? How old are you?? What are your symptoms like? Mine started 2 weeks after my baby was born. I had her vaginally w/ an epidural. I`m a married, white, 23 yr old. I`ve had B-12 checked; normal. Thanks....

[Samije]

Why is it that I can never manage to ask a question directly to a neuro on this forum?  No matter what time of day I log on, I am always told that that the quota of allowable questions has already been reached.  Anyone have any ideas?  I read in one of the neuro's responses (can't remember which one) that a "spot" in the corpus collasumindicative of very few illness. Does anyone know what those illness are?  If so, please respond as I am curious to research all possibilities.

[LMar6282]

I fit in with both of you.  Strange stuff after my pregnancy.  Very frustrating but my Neuro keeps saying it will eventually resolve by itself.  Do you notice your symptoms are worse after you eat certain foods?  For me I eat sugar and start twiching everywhere.  I went to an allergist and was told I was  allergic to sugar cane (could be part of the problem). I started last month taking a holistic approach B12 shots and supplements.  If you haven't had your B12 check I would recommend getting that done. Mine was very low after the pregnancy.  My email is ***@**** if either of you want to compare notes...

[Andrea`s_mommy]

Thanks for your reply. I`m sorry to hear that spots were found on your MRI, and you had a high protein count, but I am glad to hear that they don`t think it`s MS at this point. I try not to think that I have MS, to keep my spirits up, since everything has been normal so far. In fact, my symptoms seem slightly better, but they still linger. Mine are worse in the mornings. All I know to do now, is let the neruo monitor me. I have seen some of my tests results, and they do read normal, including my last MRI`s. But I`m gonna push for a brain and spine MRI each year, and an evoked potentials test each year too. If they`re normal, then I guess I`ll just pray that this goes away. Another lady wrote me recently and said this happened to her after she had a baby. She said everything was normal, but it took 2 years for it to go away. But it finally did. I hope that is the case w/ me. I guess time will tell. Good luck w/ your upcoming visits, and let me know what happens. Take care....

[Samije]

Hello.  I read your recent post as well as your response to me.  I certainly sympathize with your situation although I did have "tiny white spots" that appeared on my first MRI, and a high protein number was obtained from my spinal tap.  My neuro keeps reassuring me that the spots can be migraine related.  This does not make me feel any better though.  I have done extensive research on MS, and what I have learned is that the disease presents itself in mysterious ways and symptoms cannot be categorized. Doctors are reluctant to diagnose a patient with MS because the ramifications for the pateient are extensive (insurance issues, medications, etc.).  Also, there are many differential diagnoses for MS that present with similar symptoms (Lupus, thyroid disesase, diabetes, etc.)  Unfortunately, unless you have some serious type of symptom (something that the doctor would consider serious-obviously all of your symptoms are serious to you)like trouble walking, your doctor will not retest you.  I have two pieces of advice.  The first is to become exteremely well versed in MS as well as other conditions that present with your symptoms so that your doc will take you seriously.  Also, you must advocate for yourself.  I have received every copy of every test I have ever had done so that I can read the results myself and figure out what they mean.  Your doctor may downplay what is in those reports.  Once mine figured out I was planning on taking an active role in my situation, he began returing my calls promptly, asking me for my suggestions, referring me to specialistsin other fields and  considering information thatIwould send to him about conditions/diseases that he was unfamiliar with. Enough about that!  If you want to comunicate further, e-mail me at ***@****.  To answer your initial questions from your response post:  No, I have not yet seen a rheumatologist yet.  I will see one after I have had a second opinion from an MS specialist at Yale.  I too have had fasiculations, muscle tightness in all four limbs but mostly on the right side and eye pain - again, right side behind my eye.  My symptoms don't really follow a particular pattern, although I tend to feel the symptoms as the day progresses.  They peak at around 5pm and get better as the night progresses.  Most recentl, I have had strange feelings in my btongue-like it has been burned.  It is not numb, just feels weird.  I had all of my tests in Feb. and March.  I pushed current neuro to repeat in August because I explained that if I want to have another baby and should get pregnant, I won't be able to have an MRI for nine months.  I would like to know i have a condition or not as this would guide my decisions making in terms of having a second child.  Certain medications are not allowed in pregnancy.  Good luck to you.  Keep in touch.  Sorry so long!!!!

[CCF-Neuro-M.D.-JT]

It looks like they've run some pretty extensive testing, all of which have come back normal.  In a way that;s great because that means no serious neurological diseases were found, but on the other hand I can see how it's frustating not to have an answer to your symptoms. At this point in time, if a full EMG hasn't already been done, I think observation may be a good idea for now, especially with the negative testing for neurological diseases requiring urgent treatment like brain tumor or stroke. Certainly, if you develop worsening of symptoms or a sudden decline, call your doc right away. Otherwise, watching and waiting over the few weeks or months should be ok.  Good luck.