Rheumy suspects CIPD

[Denis61]

I had my first appointment with Rheumatologist last week. Unlike my doctor , he doesn’t think I have PMR but CIPD ( chronic inflammatory demyelinating polyneuropathy ).

I’m to have a Nerve Conduction Study with EMG ASAP .I heard this is really painful!

I’m so confused and upset. Maybe I have both diseases?

I’m on 25 mg prednisone and was diagnosed with PMR November 2019.

Does anyone have any experience with CIPD?

Help!

[SheffieldJane]

Gosh, what a shock. I hope the results are good for you. The tests sound potentially uncomfortable, I hope it’s not too bad. Make sure they give you a rest when you want one. Let us know how you get on. Good luck!🌹

[Denis61 in reply to SheffieldJane]

Thank you for your kind thoughts. I’ll keep you posted .

[Blearyeyed]

I can understand that this is upsetting , it's never easy when there is a difference of opinion on your diagnosis. Or when there is the possibility that you could have two Health issues at once , that only came to light when one started to make the other more visible .

Getting the tests done though , and the possibility that the Specialist may have spotted a separate condition that could be affecting you is a good , positive thing though .

If it's tested it can be ruled out .

Or if the tests are positive for CIPD , or show some other nerve related pain that complicates your PMR , it means you will get the help and additional treatment you need to help to get your Health and Pain managed , and that will make your Life more enjoyable again.

Testing is then good .

Until you know the answers , and around the time of the tests , try to keep positive , pace yourself , and keep calm and rested , as this will make the process easier.

The Nerve Tests can be uncomfortable and cause some Acute but quick pain while it is done. Take water with you and drink well before , you may want to have someone sit with you for support when it's done to help keep you relaxed while having it done ; especially if tests make you feel tense or anxious. I would also suggest that you get a lift rather than drive yourself as the test can make you feel some numbness and tingling afterwards , not severe , but something that might cause driving less comfortable .

Good luck , take care and keep us updated xx

[Denis61 in reply to Blearyeyed]

Thank you for calming my nerves with your reassuring words .

I’ll try to be brave.

And keep you posted.

[tangocharlie in reply to Blearyeyed]

I've had those tests, it was a quick shock but not too bad and all over very quickly, the anticipation was worse than the tests.

[Denis61 in reply to tangocharlie]

Thank you for making me feel better about it.

I’m scheduled for next Tuesday.

[PMRpro Ambassador]

I'm sorry to hear that.

rarediseases.org/rare-disea...

medlineplus.gov/ency/articl...

may be helpful.

I haven't had testing done but I did do experiments with nerve testing as a physiology student many years ago. I don't remember it being more than discomfort and any pain is short-lived.

[Denis61 in reply to PMRpro]

Thank you for your comforting help and article attachment.

[Marijo1951]

I had this test a few months after I was diagnosed with GCA/PMR because of bizarre sensations I was having in my feet and ankles. The test wasn't very painful - I just felt tiny pinpricks when the electrodes went in - and it didn't last very long. I had slight soreness afterwards but it faded pretty quickly. Nothing was found and it was assumed that the sensations were yet another side effect of taking pred (I was still on a fairly high dose at the time)

[Denis61 in reply to Marijo1951]

So helpful. Thank you .

[Denis61]

I’m feeling a lot more confident after reading your reply. Thank you .

[Denis61]

You have been very helpful . Thank you.

I’m all set to have EMG next Tuesday .

Feeling less anxious now and hoping for a good outcome too.

Thank you for taking time from your day to reply to my concerns.

[Horsewhisper]

Hello Denis61

My father had CIDP, it was very well managed and he received a lot of support from the GBS/CIDP Foundation. It is a very rare autoimmune condition and the EMG will help determine the course of your diagnosis. I had this test done recently and experienced only a little discomfort that was very short lived. It might be helpful to mention all of your symptoms along with your reaction to the vaccines at your next consultation. By all means PM me if you would like further info. I normally reside on the Lupus UK board and hop across here from time to time. I have UCTD.

[Denis61]

Your post is so helpful.

I’ll be sure to mention all of my symptoms and the reaction I had after receiving the flu and tdap vaccines in October 2019.

I’ll definitely PM you if I have any other questions.

You are very kind .

Wishing you many good days on your journey with UCTD.