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Neuro Doctor
Neuro Doctor, Neurologist (MD)
Category: Health
Satisfied Customers: 4626
Experience:  American Board Certified Neurologist, Internal Medicine
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I've really felt like going crazy lately. My neurologist

Customer Question

I've really felt like going crazy lately. My neurologist diagnosed me with CIDP after 5 years of chronic pain. My problem now is she no longer seems to be willing to provide me with any options and my pain seems to be getting worse. Should I be seeing a different type of doctor? Are there any things I can do myself
JA: How long have you had the pain? What seems to make the pain better or worse?
Customer: I've been having 1 type of chronic pain or another for about 5 years. the pain has always moved throughout my body, but seems to center in my neck/shoulders and legs. when it's bad, it's horrible. damp weather does seem to make it worth. it's horrible to wake up and not know what's going to be hurting today. I'm afraid to ask for painkillers since I've been sober 18 years. but I really feel like I can't take this pain much longer
JA: Anything else in your medical history you think the doctor should know?
Customer: I take psychotropic and anti-seizure meds, as well as thyroid medication
JA: OK. Got it. I'm sending you to a secure page on JustAnswer so you can place the $5 fully-refundable deposit now. While you're filling out that form, I'll tell the Doctor about your situation and then connect you two.
Submitted: 4 months ago.
Category: Health
Expert:  Neuro Doctor replied 4 months ago.

Hi, I am an American Board Certified Neurologist and I am very glad to help you with your health concerns.

I am typing some questions so that I can gather additional information related to your health concerns, I will post the questions here as soon as they are ready.

Expert:  Neuro Doctor replied 4 months ago.

1) Could you tell me all the pain treatments you have tried so far (medications and non-medications)?

2) Are you having any CIDP related muscle weakness? Is the Neuropathy worsening?

3) Have you been treated with Steroids or Immunoglobulin etc?

Expert:  Neuro Doctor replied 4 months ago.

4) Are the antiseizure meds you are on to treat neuropathic pain? What are the anti-seizure meds you are on?

Expert:  Neuro Doctor replied 4 months ago.

5) Did the EMG/Nerve conduction test confirm CIDP?

6) Did your Drs rule out autoimmune connective tissue disorders?

Customer: replied 4 months ago.
I have never been on any kind of painkiller since I am in recovery. According to my doctor, she thinks a lot of my problem is more muscular than nerve, but all I know is that it FEELS more like neuropathy, as I have a constant throbbing in my legs and my neck and shoulders, and it often goes into my arms as well. I am on Gabepetin for anxiety/pain and on Depakote (500/ 750 mg per day) and Trileptal (600 mg per day). I was diagnosed with CIDP roughly 3 years ago following a spinal tap suggested by my neurologist. I had originally been diagnosed with fibromyalgia and prescribed Lyrica, which I did not do well on. Since the CIDP diagnosis, I was put on an infusion therapy (I can't remember the name) but unfortunately had an allergic reaction to it, which caused my skin to crack and peel terribly, and had to go off the infusions after about 5 weeks. I haven't been on any CIDP-specific medications. The CIDP shows up, then doesn't, every time I have an EMG. Most of all, my neurologist doesn't really doesn't seem to be interested in me anymore. I don't know what to do and all she ever seems to say is she'll continue monitoring me every 6 months or so. I feel like she only wants to keep an eye out for my seizure disorder, not the CIDP at all. My pain keeps getting worse and she tells me "everything's fine on my end". I'm just so frustrated and so worn down by by this disease, I don't know what to do anymore.
Expert:  Neuro Doctor replied 4 months ago.

Hi, thanks for all these additional information, I am currently assisting couple of other patients and I will follow up with you at the earliest, thanks!

Expert:  Neuro Doctor replied 4 months ago.

Okay I am back and thanks for the waiting.

Coming to the discussion;

Yes your symptoms do sound like neuropathy related and CIDP being a chronic neuropathy situation it can explain your pain and other symptoms. It needs to be treated properly. I see that you had received some cidp specific treatment which caused some problems, if it was an infusion then it could be either IV immunoglobulin infusion or IV solumedrol infusion (which is a steroid preparation). One option for you is to try one of the above (the one you have not already tried). If steroid was not tried before then in place of IV steroid you also have the option of trying oral steroid like prednisone. If steroid has already been tried then you may try immunoglobulin.

There are various other cidp specific treatments like and examples include the following;



Mycophenolate etc

You need to try one of the above treatment options to prevent cidp progressing further and as the cidp comes under control the symptoms are expected to improve too. Till cidp improves you also need stronger pain meds.

If your current neurologist is not helpful to you then you may try to see another neurologist. For your pain management alone you may try to see a pain specialist too but a pain specialist may not be able to help with the cidp itself so to consider seeing another neurologist if your current neurologist is not helpful to you.

Please let me know if you have any further questions; and if you feel you have received the answer to your question please rate me so that I can receive credit for the time and effort put by me in answering your question.

Best regards,