How were you diagnosed? How long, symptoms etc?
January 2, 2012 at 3:29 pm
Hello everyone! Wishing everyone a wonderful new year full of improved health too! I am a little over 2 weeks past my first IVIG infusion/aseptic meningitis fun.. I notice small improvement, but feel like symptoms may be starting to progress again, ugh. I Have a follow up appointment on thursday to see what’s next- still no official diagnosis, besides everyone telling me I sound like GBS/CIDP..
Anyhow, I was curious how everyone got their official diagnosis, how long did you have symptoms, were your symptoms, did your tests/exams show “typical” cidp?
Did any of yall have all over muscle fatigue/exhaustion.. my face, and well every single muscle is weak, with my hands being the worst.. Anyhow, just curious of yalls stories! Thanks again!
January 2, 2012 at 10:13 pm
my final and definite diagnosis came after a full work up at the rochester mayo by dr. Dyck. I had the lumbar puncture, sweat test, autonomic testing, sensory tests, emg/ncv, and to make it definite a sural nerve biopsy.
Prior to that I was going by “probable cidp” and still receiving ivig. After Mayo my diagnosis is now “atypical cidp”.
January 2, 2012 at 10:30 pm
Thanks Lori!!! I am starting to think that Mayo may be in our future since we don’t seem to be getting many answers.. It’s so hard to just sit and wait and see what happens, since I need to be working and know what our “new” way of life will need to entail. I have autonomic testing on thursday and a follow up as well, hopefully they will have some answers, or at least a treatment plan in place.. Did you have abnormal autonomic testing?? My heart rate has been above 100 since this whole mess started.. lightheaded EVERY time I stand up and GI issues too..
January 3, 2012 at 7:15 am
my autonomic testing came back normal. Mine is slowly progressive, started in my feet, then onto ankle/calve area. The one good thing about Mayo is there was no waiting weeks on end for tests. I had a long thorough visit with Dr Dyck, all of my tests were done over a 4 day span, then I was scheduled back to see the Dr when finished.
It is really an ideal way to get diagnosed. The only thing that really messed up my week there was the spinal headache which progressed to vertigo. I went alone so my husband could stay behind to care for our kids and pets It was difficult trying to manuever busses, taxis etc with a headache from hell and vertigo—-not to mention airports and flying home in that condition.
It was a few months from the time i contacted mayo to my appt. date. But I believe like any place they must have an emergency dept. If you are getting worse by the day then i would consider going there and sitting it out in the ER to get in.
Are there other places closer to you? I have heard good things on here about hopkins. Then there are the centers of cidp excellency which are suppose to be real good.
Where mine is slow progression i havent had the need to use the ER but I definitely would if things got worse by the day–and especially with autonomis involvement, that could be serious if not treated.
I would go to an ER that had access to a good neurologist though–the local hospital where i live does not, so it would be worth a drive to a larger hospital to assure once you get there, get in, and possibly admitted there is someone overseeing your care that is familiar with neuro-muscular disorders.
I wish you the best in getting diagnosed, that’s the first stage, then once diagnosed finding treatment that works!!! that’s the stage Im currently in. None of it is easy, but hang in there, take it one day at a time—and know there IS treatment for this,we just need to find what works for us.
January 3, 2012 at 12:29 pm
gh- cidp- thank you! Wow.. that must have been scarey not responding to IVIG when you had such fast progression! Glad to hear you are feeling better! It really amazes me how things can affect our bodies like this, and that it can be so difficult to find a diagnosis too! I could never be patient enough to be a neurologist, or for that matter a neurological patient either! 🙂 It makes me feel better that I”m not alone with this generalized muscle fatigue in addition to the focal stuff.. The neurologists in the hospital mentioned PE for me next after the bad reaction with IVIG- though personally I’m fine with trying IVIG some more first.. I’ll go through anything to feel and get better, even if the headache and sideeffects arent’ fun!
Lori- thanks!! Yea, I would love to have answers quicker! This whole get a test wait…. and then it’s negative, and get more testing and wait… thing is awful! Though they have been doing a lot more since a few weeks ago when I got admitted.. I go to UT southwestern/Zale lipshy here to their neuromuscular clinic.. Apparently there is a CIDP expert down in houston (With baylor or methodist down there) that is supposed to be amazing.. I will give them some more time here to try to figure this out, since it’s supposed to be a great neuromuscular center.. and then consider going down to Houston or mayo.. I bet that was hard doing that on your own, especially with a spinal headache!!! Goodness I feel for you! Good luck with the PE!!
January 4, 2012 at 3:12 pm
Pauli- I don’t know exactly – I’ll let ya know tomorrow evening what they do to me! I think a tilt table may be involved – to see if you have orthostatic hypotension/tachycardia etc. . I think that digestion is involved in autonomic nervous system, but I don’t know if that means that people tend to be constipated or have loose bowels..My digestive tract has been messed up since this all started too – along with heart, vision, basically everything!
January 4, 2012 at 9:50 pm
GH-CIDP – great links! thanks so much!
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