AnonymousDecember 29, 2013 at 8:09 pm
I have had CIDP symptoms for a year now. I have a cervical spinal cord injury but that should not have made a difference in the diagnosis if CIDP. I have had great pain in my lower back, buttocks, hips and into the pelvic area. I’ve had a bad gait since the spinal cord injury so that might not have been noticed. Over the last year my neruo went MIA for a while then apologized saying he had a mid life crisis and have me his cell phone so I could text him when ever I had problem.
So he sent me for an MRI and I went to an orthopedist and he didn’t see anything wrong in the hip area but gave me shots in both hips to see if it was bursitis and it wasn’t. That was in April and my next appointment to see my neuro was not till July. So I went and had acupuncture and the guy only did 4 sessions because he said he felt he was only aggravating the condition. July comes I see my neuro and he has me do a Cat scan of the pelvic area and sends me to a physiatrists who decides to give me epidural steroid injections into both sides into 2 discs. No relief so he sends me on to a neurosurgeon. The neurosurgeons said there was nothing wrong with my spinal cord or anything in that area, I wasn’t a candidate for pain management because I needed stronger medication for the pain and I wasn’t a candidate for physical rehab because he didn’t see anything that needed to be worked on so he didn’t think it would help.
So back to my neuro and he see’s I’m a lot more weaker than usual and sends me for an EMG. The doctor that did the EMG said I had severe peripheral neuropathy and then started explaining how CIDP was effecting my body but never told me what CIDP was. I had to google it. So then I just waiting for my Neurologist to call me when he got me the results. I had the EMG on NOV 13 of this year.
I talked to my Neurologist on NOV 18 and he also said I had CIDP and I live 2 1/2 hour away from him so he asked what hospital would I like to have the spinal tap and the IVIG fusion at. So I looked it up real quick and gave him the phone number and address. I again texted him on NOV 25 just to make sure everything was going ok and he said they were woking on getting the spinal tap approve from my insurance. I have texted him several times since then and he doesn’t answer so I feel he is MIA again.
I know how important it is to get treatment if this is in deed CIDP. I have bladder problems and extreme problems remembering things or getting what I want to say out. It’s taking me while to write this as I forget the terms. I can google a question and usually get an answer to what I’m looking for to write someone but it’s often hard to explain things especially when I’m tried. My arms are also starting to get sore or I feel like I have the flu without being sick. My arms and hands also get tired if I try to type to long.
I have an appointment with my neuro on Feb 4 but I hope what ever is going on with him he gets out of it. In the mean time I have also made an appointment with a specialist in these neurological diseases like GBS and CIDP but I can’t get in until April 22.
I’m doing every thing I can to stay healthy including quitting smoking. And with pain for me, smoking for some reason has been a part of getting my mind off the pain. I’m on the normal pain medications and a pain patch but I still have a lot of pain. I really want a proper diagnosis so I get some kind of treatment soon. I’m not big on putting this all out and joining in on Facebook since I don’t have a clear diagnosis except two neurologist saying I have CIDP from an EMG. Does anyone have any suggestions? I also saw someone say email them if they had questions and I didn’t see any email on the person and didn’t know if you could message members on here.
Just looking for advice. I have contacted my local liaison and she told me about the doctor I have the appointment with on April 22.
December 29, 2013 at 9:27 pm
Feb 4 is too long to wait, not to mention April. You need a spinal fluid test very soon, which is used to confirm (or not) a diagnosis of CIDP or GBS. Assuming the diagnosis holds up, you should be getting a loading dose of IvIg shortly thereafter.
December 29, 2013 at 10:09 pm
Kirkly, I’m so sorry to hear about your plight, especially with what seems to be a lack of timely responses from your doctor. May I ask what city you live in? Perhaps our forum members can recommend other CIDP specialists in your area.
Some CIDP sufferers have been helped by taking Alpha Lipoic Acid (ALA). This is a non-prescription dietary supplement that is available in the vitamin section of many stores. I use the following product and take 1200MG per day: http://www.supplementwarehouse.com/viewitem.asp?idproduct=162545
A clinical trial was completed earlier this year in Oregon to exam how ALA treats CIDP. We are still waiting for the researchers to post their findings here:
AnonymousDecember 30, 2013 at 8:12 pm
I live close to Lafayette, LA. I called the main number on here and they said to call back after the holiday but Dr. I would see in April 22 was the best doctor to see in the area. I’m hoping maybe someone might get involved and can get me and earlier appointment. As soon as the holidays are over, I’m going to try to see if I can get a copy of my EMG so I’m at least ready to see a neurologist so I can get the spinal tap.
I have had a few people suggest on other sites that I go to the emergency room. That does not work around here. I went in April because I was in so much pain and I was dismissed after about 2 minutes and told to go back to my neurologist and that was even before I had this diagnosis. They were no even willing to look into what ever was causing the pain.
I tried to get help from my primary care doctor and he said to bug the nurse and she doesn’t seem very smart and had no idea about the spinal tap when I called her. She is new, but when I tried to talk to her about the pain patch I am on, she said to have the pharmacy fax the prescription and she would get it faxed back. The patch I’m on you have to have a written prescription and she should have at least known that.
I did write a letter to my neurologist right before Christmas in hopes that he will reply to a letter. He is off until the holidays are over with so maybe I’ll get a response after the holidays from him. That is my best hope right now. I’m also told I need to see someone who really knows about these types of diseases because there are times that the protein doesn’t show up and you can still have CIDP. That is what Ive been told. I belong to another site that you can message each other and on lady told me she was still diagnosed with CIDP and is getting IVIG fusion treatments and it was important for me to get the correct neurologist who was familiar with the disease.
I feel part of this is my fault because at first I think I was in a bit of denial, then I felt a bit over whelmed by all the information, and I kind of felt a woke up call when I had to get up and clean myself up because i had lost control of my bladder once again and I just thought I didn’t want to live like this the rest of my life nor have the damage because I was just sitting around doing nothing.
I”ll look for that ALA and see if I can find it. I’m starting not to drive much or not very far because anything that takes much concentration I start becoming tired. So driving very far I have to get someone to drive me now. Even just 18 miles. I can get there but the way back I have problems and I decided I just shouldn’t do it anymore.
Thanks for you all for answering!
December 30, 2013 at 9:04 pm
This may be the person you have already contacted, but in case not:
337 371 7386
If there is a chance you can get a ride to Houston, there is a Center of Excellence there:
UT Physicians Neurology Clinic
Houston, TX 66160
Appointments: Adult: Cynthia Johnson (Clinic Manager)
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