New to Forum/may have CIDP
AnonymousJune 14, 2011 at 2:14 pm
Hi everyone. Yesterday I saw a neurologist who specializes in MS . For the past year I’ve been diagnosed with a progressive form of MS so I was going there to discuss further treatment options. Well she looked at my paperwork and was not happy. My latest Mri’s were almost clean , NCV showed sensory nerve damage and my EMG was done wrong. She is know saying based on history,clinical finding,observation that it still may be MS but she is repeating the MRI’s to include brain,cervical and t-spine w/wo contrast and another ENG all to be done at her hospital because they have the latest equipment there.
Well I looked at the order for the EMG and it stated polyneuropathy . I’d asked her what if the MRI’s didn’t show lesions then what are you possible think it may be? She mention vasculitis and cidp. I have to mention that I also have lupus too and vasculitus.
I’m still in shock over all this . As all my family,friends ,church members have been told that I have MS and lupus. I never thought that I’d be undiagnosed or have it down grade to probable MS. But in looking at my tests and the symptoms of CIDP it does fit.
I should say my symptoms are :
Moderate weakness in body (arms,hands ,legs,feet ,ankles )
spasticy in legs,feet,arms
numbness ,tingling (legs,feet,hands ,arms , upper back/shoulder areas)
blowel trouble (IBD)
swallowing food problems
speech /word searching problems
I use a walker mostly in the home and a wheelchair everywhere else
These are not all my symptoms as they other one over lap with my lupus and other disease.
I know you all aren’t here to diagnoses . I’m just looking for opinions/is this a common thing to go from an MS diagnoses to cidp? And just advice .
I’m really very shocked over this . And I know that its going to take at least 3 more months to get the referrals ,test down and another neuro appointment to discuss results. My head is spinning but I know that God is looking over me. Just scared but my health has been getting worse in the past 3 years.
Thank you all for reading my post. =)
AnonymousJune 15, 2011 at 12:12 pm
Hang in there 🙂
Unfortunately many people are misdiagnosed.
The good news is that your docs are looking into it.
Hopefully soon you will have answers and get the proper help and treatment you need.
As far as telling everyone, just tell them the docs are not 100% sure that you have MS and are completing new tests to make sure you get the proper help you need. You can explain that CIDP is very simular to MS and that CIDP is often missed when first diagnosing someone.
Stay positive and let us know what happens,
AnonymousJune 17, 2011 at 10:15 am
I recall a previous talk on this subject. here:
Can’t say I remember anyone saying, for certain, their diagnosis changed from MS to CIDP. Good luck on your follow up testing.
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