I need help to understand my reult!
AnonymousAugust 14, 2010 at 6:06 am
This is my first post on this forum.
I’m 32. I’m sick since early 2005, but I was misdiagnosed for a very long time. Finally in the summer of 2009 I got a diagnosis of late stage Lyme disease.
Also, in Sept.of 2006 I had very bad headache, I started to have brain fog, memory and cognitive problems and my scalp became numb, but all the doctors that I saw couldn’t tell me what it is.
In Sept.of 2008 all my body muscles became numb (face, neck, arms, legs, back, chest…). I mean my muscles are totally numb but I can feel my skin a little. Also I always have low grade fever, fatigue, hairloss, I lost a lot of weight.
My numbness never changes, I have it 24/7.
Now I have muscle atrophy and joint degeneration.
I had an EMG/NCS test about 1 month ago, but my doctor only said that I have polyneuropathy.
I would like to ask your help to understand my result:
[I]Opinion: No abnormal findings in the muscles of the ULs. In the LLs in the Peroneal nerve bilaterally low amplitudes indicating loss of axons. Acute denervation process was not noted but elongated motoric units were visible. Observing the hypotrophic hand and foot muscles and the Charcot foot morphology I concluded that the patient is suffering of a neuropathy with waste of axons. This condition can be acquired as well as congenital.[/I]
Could somebody tell me how can I know if I have CIDP or not?
AnonymousAugust 14, 2010 at 9:21 am
Welcome to the forum. Although I don’t have any quality answers here, I would like to wish you the best of luck with your particular situation. The symptoms you decribe could very well be part of the GBS/CIDP area, I would suggest that you look for a neuro in your area that is up to date on GBS/CIDP field. Also, make sure you go to the GBS/CIDP Foundation International home page and register. They have a lot of answers that may assist you. There are probably others on this site that will also help you. We will keep you in our thoughts and prayers.
AnonymousAugust 16, 2010 at 11:18 am
Welcome to your GBS/CIDP forum family. Your situation sounds really bad. I agree with Pat you need a very good GBS/CIDP neurologist that cares. The tests, you will hear from everybody on this site, differ from person to person. Please do read all you can & ask as many questions as you can.
You are in my heart & in my prayers.
AnonymousAugust 17, 2010 at 8:35 am
Observing the hypotrophic hand and foot muscles and the Charcot foot morphology I concluded that the patient is suffering of a neuropathy with waste of axons.
I cut and pasted this quote from your post. I’m sorry I dont have the answers you are looking for but, I wanted to ask if you have a high arched foot or extremely flat foot ?
I was misdiagnosed for three years with CIDP only to find out I have Charcot Marie tooth. Alot of people with CMT have a very high arched foot…but I have very flat feet. In my opinion, CIDP and CMT are very, very similiar. CMT can be diagnosed with a very expensive DNA (genetic) blood test. CIDP has treatments, CMT does not.
They would have never guessed I had CMT but my oldest sister was diagnosed and triggered the Dr to re-think his mistakes. I never responded to thousands and thousands of dollars of IVIG. Anyway…I shouldnt get started on that…but, I have lots of axonal damage…which from reading your result, I think it’s safe to say, you do, too. At least some.
I’d agree that you should find a good neuro and ask them to explain what it means. Get to the bottom of it so that you can find the proper treatment. If it can be treated, you dont want to wait to get started. Waiting means more damage. Trust me…I know. :rolleyes:
best wishes to you and sorry I couldnt help more.
AnonymousAugust 22, 2010 at 12:54 pm
I too have been diagnosed with possible Charcot Marie Tooth, as well as axonal damage from GBS. I have high arches and several family members have some neuropathy in their feet. The CMT that my relatives may have is mild, so I never took the tests. I am curious as to whether any studies have been done to find a genetic link between GBS and CMT. Maybe I will get the genetic testing done one day, if I can afford it.
AnonymousAugust 22, 2010 at 1:03 pm
Lyme disease can cause the problems you describe. When my daughter was in high school, a girl in her class became so ill that she had to quit school and was confined to a wheelchair. After two years of testing, doctors finally found that she had Lyme disease.
AnonymousAugust 23, 2010 at 10:58 pm
Thank you so much for the answeres.
Actually I have a very flat foot.
Since last summer I’ve been taken antibiotics but I don’t have any improvements. Actually when I take them, my numbness is worse.
Unfortunately I don’t have a Neurologist. I visited many doctors but they didn’t help me. I’m still looking for one.
Could somebody tell me whether muscle atrophy can recover? Can I gain mucles again or my muscles will be only worse?
And is CIP the same as CIDP?
Also, I have very bad brain fog with memory and cognitive problems. I couldn’t find an answer whether CIDP/CIP can cause it? And can IVIG help to clear the brain?
You must be logged in to reply to this topic.