February 15, 2019 at 8:50 am #116284
Any thoughts on me having all the symptoms of CIDP but no diagnosis with EMG which my Doc stated that I do not have CIDP because the EMG rules it out.Another Doc told me a EMG can not totally rule it out. Has anyone experienced this situation? Do not want to be significantly damaged before I can get help. Thanks TimFebruary 15, 2019 at 7:46 pm #116285PeteMParticipant
Tim, I had 4 MRI’s, a CT scan….fell about 80 times while waiting for diagnosis, smashed up the car …no feeling in feet, hit brake and gas at same time!
Doc finally did spinal tap that confirmed CIDP, started IVIG gamma globulin, Now I can stand, (help with dishes) walk/shuffle short distances (20 feet) Big problem here is total lack of peer support! It’s a very lonely journey.February 16, 2019 at 2:08 pm #116287GHParticipant
Negative tests do not completely rule it out, and clinical symptoms do not necessarily rule it in. Neuropathies are often difficult to diagnose.February 18, 2019 at 9:37 am #116292
I have the reverse in that I was diagnosed for 4 years as having CIDP and took IVIG every month. Now the doctors have decided I have Axonal Nueropathy which is acute and I am in a wheel chair 90percent of the time as cant walk or balance. The doctors proclaim no known treatment or medical plan just live with it. Has anyone else had Axonal Neuropathy I am not sure that the doctors are really sure that any of these diagnosis is accurate for any of these forms of auto immune neuropathy. Any one else have any ideasFebruary 18, 2019 at 10:26 am #116293
I do not have any info for you on Axonal Neuropathy. Search the internet with every wording relevant ,this sometimes can float to the top the help. All the best Gary! TimFebruary 18, 2019 at 10:36 am #116294
Hello Peter: Keep a positive outlook. I understand that it can be hard. May the IVIG put you on a path to a recovery!!!!!! Also thank you for your reply. I have to keep pushing for a diagnosis as I had GBS in 2002 and this is such a familiar feeling but with gradual deterioration. Thanks Again TimFebruary 18, 2019 at 10:49 am #116295
Thanks Tim I guess I am looking for a group or a meeting to attend where someone else has the same darn thing that I do?? I belong to this CIDP/GB group as I joined 4 years ago, so was hoping someone might have some ideas within our group? Thx GaryApril 21, 2019 at 7:35 am #116340
Hello Gary : I have some thoughts for you and a Doctor that you may want to contact. Have a BLESSED EASTER !!!!!!April 25, 2019 at 1:22 pm #116343
Hey Tim what are your thoughts —I dont really have a plan of any sort. No medical or medicine plan whatsoever. Advise your thoughts — How can I connect with others that have the same Acute Axonal Neuropathy that I have which is a form of GBS — there are so many variants of this disease. Advise and Thanks GaryApril 25, 2019 at 4:43 pm #116344
Hello Gary: Give me a call when you have a chance. 724 991 0665 Thanks TimApril 25, 2019 at 5:37 pm #116345
I just tried to call give me a shout when you have time Gary 505 204 1870April 25, 2019 at 10:30 pm #116346Jim-LAParticipant
The following article from Dr Lewis may provide helpful info about your CIDP variant:
Most patients with CIDP have some axonal degeneration without demyelination. Some have heavy demyelination with little axonal damage. Axonal damage is the most difficult for the body to repair. The variability of the disease makes it hard to diagnose correctly.
I have both conditions and have been wheelchair-bound for 10 years.November 8, 2019 at 12:46 pm #117250jon swansonParticipant
Hey Jim-LA. I have a child hood buddy (10 years younger) who is paralyzed from the waist down from getting shot in the neck scoring crack in N. Philly. I used to think that this disease was my karma for being an example to him some 25 years ago. I have been meaning to say hello to you.
Curiously now being a year post initial symptoms, I have a mild reborn feeling. If you ever need a place to stay, I am in La Mesa. Peace.November 8, 2019 at 4:55 pm #117255
Jim— this goes to Tim 11 too please. Your so correct that it is both CIDP & Axonal degeneration at the same time. There has to be an answer to this darn stuff that is ruining our lives. God built us with almost 2 of everything, and I certainly hope there are two sets of Axonal nerves. I am going to the Mayo Clinic to see if they have anything in Advance Research on this and will keep you all posted. Gary
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