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My Journey so far

Mar 29, 2008 - 4 comments

Here's my story so far:

Early May 2007  - Had episode of palpitations lasting 30-45 seconds in a very hot room,  also had episode of perineal numbness lasting 3 days or so.

Mid May 2007 - Right Calf cramp lasting 4 days, then woke up w/ cramp gone but R>L leg weakness, extreme shakiness, twitchess & fatigue.  "felt like my legs had really low blood sugar"  Whole body vibrating.  No sleep

Early June 2007 - Sx cont. Fine mototr skills and speech difficulties starting.  saw urgent doctor - + Babinski in left foot, Negative CBC, Chem 21, Sed Rate & Brain MRI (3T Machine)  w/O contrast.  Referred to neuro at my request.

Mid June 2007 - Saw Neuro #1 - Ordered C & T spine MRI's (3T Machine) - both came back normal.  Noted + Babinski Left foot but gave no explanation.  Recommended increase Zoloft, I did as rx'd.  Started to feel more strength by end of June.

Early July - temp increase to 99.4 hormonal and vibration in body got stronger and sx started to increase again.  Called 1st neuro requested Medrol dose pack - took with some relief by 4th day.  

Early August - Same episode of temp increase and then sx increase happened again - went to neuro and he dismissed as "hypervigilance"  gave rx for another antidepressant to add to original.  Made an appt. w/ new neuro.

Mid August saw Neuro #2:  He did SEP - mildly abnormal both legs, EMG - left EDP positive, and NCV negative.  Also did GTT, CK, Aldolase, Lyme - all negative.  Recommended Mayo clinic neuromuscular doctor for +EDP on EMG.  

August thr November - Episodes continued 3-4 weeks of sx followed by 1-2 weeks of strength.  Tried Birth control pills with no relief.  Started Baclofen for Muscle cramps and to help sleep and Cymbalta for depression and nerve pain.

End November Early Dec. - Went to Mayo - Neuro #4 -  Did repeat MRI Brain w/ Contrast (1.5T Machine)and lumbar MRI along with numerous blood tests and neuro ophthal. consult.  All tests normal except severe lumbar degenerative changes in spine.  Conclusion : Post viral Syndrome but still does not explain "illeopsoas weakness" during neuro exam.

Dec - March - Sx continue and episodes space out the same but do not run with menstrual cycles liek they used to.  

March 2008 - Saw Rheumy - ordered  Xray hips, right hand & foot.  D/c'd  Baclofen and put me on Cataflam for inflamation in my spine saying that even thought I do not have back pain per se it could be causing my leg weakness.  Also states I am sleep deprived and gave me Ambien for that.  Recheck in April.

March.2008  -  Neuro #4 - gave all records and discs to review.  Said I am a complicated case but that "with no MRI lesions it is not MS" and even though I have high arched feet I do not have muscle wasting in my lower legs so Charcot Marie Tooth disease is out too.  Ordered EEG due to previous hx of severe migraines until age 31.  Started me on Topamax - anti migraine medication to decrease hypercortical activity found on my EEG that he thinks could be causing some of my problems.  Recheck in April.

April 2008 Recheck w/ Neuro - Now he states I do NOT have an abnormal EEG and I should just stay on the Topamax for the migraines even though I told him I hardly EVER get migraines.  He checked my Protein Plasmophoresis and my Alpha Globulin was very slightly elevated so he is sending me to infectious disease doc. ????  Also going to new Ophthalmologist as vision is getting blurrier.  Can anyone say WHATEVER!!!

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Avatar universal
by marez, Apr 16, 2008
I can say WHATEVER geez... we sound alike as we have no clear anything on tests and no real migraines....
this stuff is dang confusing and wanting to use extreme foul language!!!
4 Neruos girl how do you get the strength to keep going? How do you get into different Neruo's?? lots of questions for you but just took second dose of Neurotin yesterday was the first so will see if I can focus in a few minutes LOL!

Look forward to talking to you.
Hang in you sure seem to have patience and a great advocate for your own health keep it up!

Avatar universal
by worriedmother3, Jul 18, 2008
I think that there are a lot of people who can say whatever to the ongoing doctor visiting with no real diagnosis.  I can definitely relate.  My son has had muscle weakness and pins and needles throughout his entire body for two years and we still have no diagnosis.  It is very difficult to go from doctor to doctor and to have repeated tests done.  It is so frustrating.  There seems to be so many people who are in the same kind of boat with neuro muscular disorders.  It must be hard to diagnose.  It also takes so much time.  Not only does being sick take up so much time, but scheduling doctor appointments, tests, and labs is just plain hard.
I hope that everyone who is searching these sites looking for some possibility of an answer finds one.  I hope that you are able to find the right doctor that will be able to say "Aha!  I have figured it out."
Good luck!

563310 tn?1221565027
by cat1203, Jul 29, 2008
Hi there, aren't doctor's great, first they say one thing then say no, I don't think so it is this, take this for that and that for this.  Before you know it you are taking so much you are a pill.  At least my son tells me I am.  I am trying to be funny for a change.  Not quite making it though.  Hope you feel better.

Avatar universal
by Mountain78, Jan 24, 2013
Hey! I had symptoms very similar to yours and it turned out to be a wheat/gluten allergy. I would start shaking and trembling when my core body temperature went up...and the symptoms were worse 1 week before my period. I also had heart palpitations, muscle twitches, brain fog, and low exercise tolerance. Apparently if you're sensitive to wheat, it can really tear up your digestive tract allowing undigested food particles to enter your blood stream and then you develop even more food sensitivities. I've been on a gluten/dairy free diet now for 6 months and my symptoms have almost all gone away. Besides doing an elimination diet, the best things that have helped me heal were eating home made bone broth every morning to heal and seal the lining of my digestive tract and then also taking 3/4 teaspoon of Green Pastures Fermented Cod Liver Oil for the vitamin D. A Probiotic supplement also helps.

You might want to look into the GAPS diet or books like "Wheat Belly," "Breaking the Vicious Cycle," and "The UltraWellness Solution."

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