Any specialists in Prescott/Phoenix for CiDP with government insurance?
June 10, 2020 at 11:56 pm
I’m sure that the cause of my CiDP was started by excessive walking at my job. I have written a short story about it which I’ll paste here:
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
This condition began seemingly as a result of beating up on my feet for the past 1½ years.
This damage worsened parallel with starting to walk 6-9 miles a day, 5 days a week at work. Suddenly. My previous job required sitting all day, which perhaps primed my sensitivity to the heavy abuse that followed. Starting in Nov 2018, my feet hurt SO bad for the first 4-5 months straight. There was tingling but it was greatly overshadowed by the limping pain I was in until I fell asleep, every..single..day.
So my body gradually started killing those nerves where I felt pain until the entire surface which touches the ground, eventually went blank to walking pain. It was like a response to the pain/trauma.
Now it feels like I have tiny eruptions of electricity across the skin all over my feet, often repeatedly in the same place. They hurt so deep when they get cold, like to the bone. The feet need to be heated for at least an hour to regain comfort.
Most movements, really any bodily functions, are shadowed by an attention to stablity. Like a sober brain trying to control a drunk body. I fall at least once a day. It is a constant distraction. Causing problems with focusing, remembering tasks.
I was diagnosed a week ago and need help/treatment. My PCP is looking for specialists in the Prescott/Phoenix, AZ area that accept government insurance!
June 11, 2020 at 12:25 am
If you have any input regarding my post, I’m here to learn more.
June 11, 2020 at 2:31 am
The following article is written by Jim-LA a moderator on this forum and a fellow CIDP
CIDP is where the autoimmune system remembers how to make antibodies that attack “self”. The condition can lay dormant for years before being triggered by some virus like Shingles or a flu shot. When triggered, our systems can produce antibodies that go on the attack to remove invading organisms from our body. In doing so, they can attack parts of the body itself, usually focusing on soft nerve fibers such as Myelin. This causes weakness and loss of muscle control, burning and shaky muscles.
Here is a summary of the types of cells involved:
• B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other “non-self” foreign antigens.
• T lymphocytes (T cells): Some T cells help the body distinguish between “self” and “non-self” antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.
• Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.
IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage, especially the ones that have travelled deep within your system. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).
One of the best long-term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the autoimmune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used. However, when a CIDP attack reoccurs, IVIg or Plasma Exchange is usually given to stop the initial severity of the attack.
It sounds like the bad antibodies are still very active inside you. That could account for the numerous symptoms you have described. I experienced all that stuff when my disease was still very active. I had a combination of GBS/CIDP/MFS. The MFS piece seemed to take control of my head; the GBS piece had its way with my extremities. The symptoms you describe bring back awful memories.
For me, IVIg did nothing. I had it for several weeks and my symptoms continued to worsen. It wasn’t until I started PE that I started to return to a more normal state. The symptoms began to diminish following PE. If you haven’t been treated with PE perhaps that is worth discussing with your neurologist… right away!
June 11, 2020 at 11:30 pm
Thank you for that article AND your personal input. That allows me to understand better what the different treatments actually do to your body and what I might expect as a result from them. Being very new to what I’m learning about my condition, the surprise has still not worn off, and treatment still has not begun.
Thanks again, Sean
June 12, 2020 at 5:07 pm
Hello Sean, you are lucky to have a “center of excellence” in the Phoenix area. Please contact Dr David Saperstein here:
They take all kinds of insurance plans. Check out their website to see if they take yours.
June 12, 2020 at 5:17 pm
It appears Dr. Saperstein has started his own special neurology clinic, but still in Phoenix here:
June 12, 2020 at 6:11 pm
I just learned of another “center of excellence” in Phoenix:
Ask for: https://www.barrowneuro.org/get-to-know-barrow/person/suraj-muley-md
June 12, 2020 at 7:02 pm
Fantastic Jim. Thank you for the recommendations. I’ll give them a call, see if they do take mine.
August 4, 2021 at 5:20 pm
I’ve been seeing Dr. Saperstein for almost a year now He’s good and has been a lot of help. I just started the IV IG infusions again after after a year off for covid as well as my white blood cells dropped as I was seeing another Dr. he referred me to Dr. Saperstein. His office is on 7st and McDowell across the st from Banner University hospital. And yes he does take Tri Care I just have to pay 45 in co pay
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