Searching For Diagnosis. CIDP? Please Help Me

Hi @10987654321, as a last resort, it is not uncommon for people to post to online communities, like Mayo Clinic Connect. Certainly members here cannot provide a diagnosis, but perhaps share similar stories to help you research your issues and work with your doctors to find cause and cure. Here are a few discussions that you may wish to read to begin your investigation.

- Mysterious shortness of breath https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/
- My Mysterious Illness https://connect.mayoclinic.org/discussion/my-mysterious-illness/
- Icy feet and ankles with Small Fiber Neuropathy....anyone? https://connect.mayoclinic.org/discussion/icy-feet-and-ankles-with-small-fiber-neuropathy-anyone/
- 2 years sick, nauseous and dizzy, no answer, please help. https://connect.mayoclinic.org/discussion/2-years-sick-no-answer-please-help/
- 1 million dollar workup and still no answer, 8 months of suffering https://connect.mayoclinic.org/discussion/1-million-dollar-workup-and-still-no-answer-8-months-of-suffering/

What specialists have you seen? What tests have been performed?

@10987654321 Have they ruled out COVID? It can cause a lot of crazy symptoms and as you said, you had a sinus procedure. I had recent surgery and testing for COVID virus by nasal swab and the blood test for antibodies was standard procedure before my surgery. From what I understand, a hospital is a better place for that test, not a drive up testing area in a parking lot.

Mri brain one without contrast one a month Later without contrast mri spine eeg

A bunch of bloodwork

Do you think this could be vascular? Like Vasculitis?

Please help me

I was told I had sensory polyneuropathy that is demylenating on emg.

No one has treated yet they though b12 shots but I’m getting worse!

ADVICE trouble walking now can’t drive function right

Seemed to get weaker after lumbar puncture

What should I do

Do you think it could be cidp???

Hi @10987654321, I moved your most recent message to the discussion you started earlier to keep the history of your story in one place. I'm glad that you are making progress in your diagnosis and that the EMG showed sensory polyneuropathy that is demylenating. Here are a couple of discussions to help you further with your investigation of CIDP and polyneuropathy.

- Idiopathic Progressive Polyneuropathy: How to find a specialist? https://connect.mayoclinic.org/discussion/idiopathic-progressive-polyneuropathy/
- CIDP (chronic inflammatory demylinating polyneuropathy) https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

I have been to a neurologist that has taken nine months to figure out I have CIDP and now he is sending me to another neurologist that specializes in this field. However I cannot get in to see him for a month and a half and I’m really concerned because my symptoms are not getting better. I have health insurance through OptumCare Southwest medical and I don’t know what to do. I’m really perplexed because I’ve had several nerve studies and it the last neurologist took nine months to come up with this disease and now the new neurology specialist wants to give me another nerve study.

Hi @slavichx, I'm just seeing this post now. How are your symptoms these days?

Slavich, I would assume that your current neurologist will share your medical history with the new specialist, including results of diagnostic tests you did. You may wish to ask the new specialist why another nerve study is required. It is possible that she/he wants to compare the results of the tests over time.

You might also be interested in this discussion:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

As you prepare for your upcoming appointment with the new neurology specialist, have you organized your questions into a list?

@slavichx
Like Colleen, I did not notice your post when you placed it here on 9/15. Sorry no one responded then, did not mean to ignore you certainly! Interestingly CIDP came up in two other discussions just today. One person with CIDP, @sparshall , said that it is very important to have the diagnosis and start treatment for it as soon as possible as waiting too long could lead to unfortunate developments such as potential paralysis. Not trying to alarm you, but you should make sure your doctors are moving things along toward treatment options in a timely manner. Hope to see you post here again. Best, Hank

I just ran across these YouTube videos that I thought might be helpful for anyone new to CIDP and looking for answers.

Optimizing Outcomes in CIDP: Honing Diagnostic Accuracy, Personalizing Treatment Plans