Managing Small Fiber Neuropathy, Sjogren's, Hashimoto's

I had my first infusion of Rituximab yesterday. I promised to report on it and I shall. I'll let the mentors decide if it is of interest to anyone. I was fine all day and the nurse watched me intensly for any reaction. I had none at the fusion center. But later that eve I had very loose stools that went on a good while. No cramping or nausea, just total bowel emptying. Don't know if this was an allergic reaction or not. Also felt very over heated during night.
The next morning I felt as usual except for one thing of note: The neuropathy (My diagnosis, not seen by dr. yet) in my hands which had just started a few days ago, was gone. There had been a numbness which was replaced by a sort of vibratory feeling. Only thing different but signicant, I think.
My diagnosis: SFN of legs brought on by Sjogren's Syndrom. Loss of weight bearing balance and muscle wasting. Have been doing IVIg since last Sept. with no improvement. Biopsy of rt. leg showed zero fibers at ankle and knee. My immune system was taking them out as fast as they could be made. More tomorrow perhaps.

Hello Shelly,
I was going to Columbia Presbyterian Hospital, NYC, If you live an hour to hours away it's worth going there. I live hour and half without traffic.
I don't remember what I told the Doctors but they told me they want to do a biopsy on my leg to find out if I have autoimmune disease, Came back Positive. Was sent to a Neurologist there. Than they asked other questions, sent to ENT, lip biopsy, positive for Sjogren's. Years later Neurologist sent me to a Rheumatologist. I saw 3 until I found the one I'm seeing now. I have to look on my computer to find the script she sent me so I can tell you. Leaving this site I hope I don't loose you. I pilocarpine for dryness, do you take anything for that? My husband asked her last week how bad it, she said severe. I was surprised but it's becoming too much. this dr. that Dr!!!! I should have asked, what do you mean, Why!!! One dr. I saw told me I don't need another appt because nothing more can be done!! That was encouraging!!!!!!! I don't know where you live but I have researched drs. try to find as much info. as I can. Most it works, not all the time. Let me know what you think. Have a good evening!

Shelly, May I add, what is SICCA?

Penn, I can see that we both have lots of questions. I will try to answer the ones I can. Coincidentally, I just had my second treatment with Retuximab 6 mos after the last one in April of this year. Retuxiab is a monoclonal antibody that helps the body clear out B lymphocytes that are thought to be part of the problem for autoimmune folks. Sjogrens is thought to use B lymphocytes as part of its attack on our bodies. It helped me enough to repeat, with little to no side effects so worth a repeat. IvIg is where they collect healthy gammaglobulin from lots of healthy people and give it to you. It is for all autoimmune people. They have been using it for over 30 yrs and are just now figuring out how it works.
Sicca is the collective name for the conditions of dry eye, mouth and skin that are caused by Sjogrens.
The treatments you mention, I do not know what they are. Could you explain them?

suetex,, THANK YOU!!!, MY Rheumatologist did not want me to have the IVIG and the Retuximab, she concerned because my Sjogren's is worse. I'm going to speak with her again about it. Did you ever look into family background with Autoimmune issues? I would love to find out. As of now no one family had it going back to 3 generation. What makes it worse, failed back surgery so pain all the time. I have a pain pump implanted by my Pain Management DR. Helps Cervical Spine.
Your very informative, THANK YOU AGAIN!!!!

Hello again, I appreciate all the information you send me!!!
Question, aside from the GGO you sent something about autoimmune and sites I could go just recently. Is it possible to send again?

@penn, I think you might be referring to the 2 websites that @becsbuddy posted:

GARD (Genetic and Rare Disease organization): https://rarediseases.info.nih.gov/
NORD (National Organization for Rare Diseases): https://rarediseases.org/

It's Hereditary but in my case it must be going back Generation's!! No one going back to Great Grandparents had it!! I guess I'm the lucky one! My brother and sister no.
I have no real relief. I use Trazadone for nerve pain and Aspercream spray, it helps the burning legs and Dr. Joel"s Max. Strength Neuropothy Hemp Cream, helps a little so I use it. Nortriptyline HCL 10 MG does anyone take it? Does it help? As of now I can't leave my home, sitting is so painful!!!! Thank You for reading this.

It's Hereditary but in my case it must be going back Generation's!! No one going back to Great Grandparents had it!! I guess I'm the lucky one! My brother and sister no.
I have no real relief. I use Trazadone for nerve pain and Aspercream spray, it helps the burning legs and Dr. Joel"s Max. Strength Neuropothy Hemp Cream, helps a little so I use it. Nortriptyline HCL 10 MG does anyone take it? Does it help? As of now I can't leave my home, sitting is so painful!!!! Thank You for reading this.