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I don't feel these are part of CIDP variant/Dx--but my initial questions were Re: "flares" of pain, weakness, tremors, spasms, & Fasciculations (thanks Dahlek for med term for those muscle twitches)
these "drop attacks" epsisodes re-occurring so frequently ,did overshadow those concerns & were addressed in post. They are scary but are NOT new--have occured erratically for over 10 yrs.Began after I was hit by car -TBI & other injuries- Seizures were initially suspected & ruled out. also MS, and several "mimics" and other disorders like CHIARI, subclavian steel & other conditions i don't recall right now.. Vagus issues have been addressed-by few drs--a new neuro i saw last year ordered tests w/ "Vasovagal syncope" as Dx. suspected. but not confirmed. I've had many tests, seen many DRs-neuro's & other specialists... years of these weird episodes occuring--sometime serveral times a day for few days then stop. then recur... w/ no predictability. and often w/ injury, are not only scarey but source of anxiety. I've had periods where these attacks don't occur for several weeks- then WHAM - begin again-- also very upsetting to those [family] who witness these episodes. I know they feel helpless, but so do I.... I'm told look like a rag doll collapsing -in weird positions (my home health nurse said she couldn't imagine anyone being able to consciously assume some she's witnessed) I do NOT lose consciousness. I can hear, feel, but cannot speak nor move-- my eyes are usually closed initially & I've been told "flicker".... eventually eyes open and graudally regain movement thruout body. frequent injuries and several trips to ER have also resulted from these attacks. after i'm very tired or emotional. always get severe stabbking pain in head after, that may resolve quickly or become migraine. Neuro Dx'd -- A-typical or "complex" migraine... anther long story/issue and a reason for trying Botox. I've researched & many syptoms do apply. but the drop attacks.... CATAPLEXY most accurately describes what occurs. http://www.medterms.com/script/main/...ticlekey=10470 http://wrongdiagnosis.com/c/cataplexy/intro.htm I've discussed this w/ several DRs inc my neuro. we discussed treatmts for cataplexy.. an issue itself... Is this Cataplexy? (wil try to post more details about this, esp. post traumatic occurances--I blame TBI for many things... I've recently learned many sleep disorders can/do occur after TBI--inc. Narcolepsy. Most say Cataplexy only occurs w/ Narcolepsy. Sleep tests/labs have told me I don't have any sleep disorders seems go round in circle-w/ recurring as well as new or worsening other symtpoms problems that may or may not be related... but def. having major impact on life now... these are but a few of the things affecing... not only me personally, but my family-specifically my terminally ill elder father -whom I've been livein carer for ... did get some help w/ his care, still so many responsibilities, duties I wish could delegate.. that aren't getting done...etc. Overwhelms..... my appt is tomorrow (DR out of town) THey have fit me in when needed. but getting to DR can be challenge--it's apprx. 6 hr rd/trip, have to arrange care for my father, hire a driver, etc. ' I wish Neuro was still local but until i find a better DR closer, or another option.... I 'm continuing my list of issues, questions & trying to prepare for appt. will update thnks again, to all for your caring concern, support, suggestions... IVIG is scheduled for later in week... Last edited by pono; 03-18-2008 at 09:01 AM. Reason: add |
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