There may be some good doctors closer to you than Houston. Please contact the GBS-CIDP liason in your area here: julie.bell@gbs-cidp.org her phone is (210) 885-0054. She is located in San Antonio but has knowledge of the wider area. UT has two centers of excellence near you, Houston and Dallas if you can’t find an expert closer.

Good luck with your recovery

There are already many discussion threads here about the drug. Rather than start a new one, please do a “Search the Forum” by keyword (Rituxan, Rituximab) to bring them up. Here is a link to one of them: https://forum.gbs-cidp.org/topic/rituximab

gressier, I had AFib because of CIDP and had breathing problems also. My heart would skip beats and flutter; I couldn’t take a deep breath or blow my nose. I had to go on blood thinners for the AFib and have daily-medicated breathing exercises for over a year.

My autonomous systems were in perfect shape before CIDP struck (I was a semi-professional Tennis player and quite athletic). About a year and 80+ PE treatments latter, I was off blood thinners and the AFib abated. This was not the result of IVIg because I had stopped those treatments long before the AFib started up. Most people who have heriditary AFib (not from CIDP) don’t recover without on-going blood thinning meds. I had PE while taking blood thinners and when I stopped taking thinners after a year or so, my AFib was no more. My healing could have been due to many things, I think it was the PE.

Some nerve damage can be repaired. Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment (HSCT). Axonal damage is another thing and you can read about it here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846285
https://forum.gbs-cidp.org/topic/determining-axonal-damage-using-emg-results

Jim

IVIg Side Effects:
It is fairly common for patients to experience headache (which can be mild to severe), stiff neck, and fever during or shortly after an infusion. This is called aseptic meningitis syndrome (AMS). These symptoms are manageable and can be minimized or prevented by infusing IVIG very slowly. Patients may often feel fatigued or flu type symptoms for a day or two after their infusion.

If the increased dosage of IVIg may be hard for you to tolerate, consider SCIg as an alternative treatment. SCIg does what IVIg does treatment-wise with less possibility of AMS

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!

There are numerous municipalities in East Texas! I checked the City of Texarkana and they appear to have services that may support you, if you lived there. In lieu of a City name, perhaps the best resource would be the State of Texas Dept of Aging and Disability Services here:
https://www.dads.state.tx.us/services/listofservices.html

They have numerous programs you could leverage for financial aid. I hope some of this works for you.

There is some information in the following discussion threads that may help you understand your reactions to IVIg treatments and provide alternatives:
https://forum.gbs-cidp.org/topic/ivig-treatment-to-continue-or-not
https://forum.gbs-cidp.org/topic/loss-of-smell-and-bronchitis-symptoms

I too was irritated by noise, but the condition fluctuated where I had to turn up the volume louder than normal at times too. My vision was ultra sensitive to light and i occasionally saw flashes. My speech and breathing were affected also. And, of course, I had all the standard symptoms too.

You might want to look into taking Alpha Lapoic Acid for the neuropathy.

Push yourself a little with physical therapy, but don’t go deep into the fatigue area. Be patient, it can take several months to recover from GBS, especially in the extremities.