Small Fiber Neuropathy, Sjogrens, Hashimoto's

I can't respond to any of these as my PN is very different. I have never had pain -- just numbness and difficulty walking. For the record, I have learned to pay attention to my feet while walking. I always make sure my big and little toes are on the ground... I walk barefoot to get maximum effect, but also do this all the time while wearing shoes.... It helps a great deal with my balance. I also suffer from vertigo and this also helps at least a bit with that...... I am lucky not to have pain and can understand how difficult it is because occasionally my feet burn in the morning... removing them from beneath my quilt rapidly stops it .
One other thing I have found that may help those of you who get muscle cramps. Hylands produces excellent pills for this condition.. The muscle cramps, particularly when they reached my thighs, drove me crazy... I take two Hylands' tablets for muscle cramps at night and are completely free of muscle pain. They sell one for overnight use and another for use during the day which I have never needed.
I have no idea why I have never had any pain... I am 93, have had hypothyroidism since my forties and take 175 units of Levothyroxine. I also have a pacemaker and eczema == neither of which are linked to PN... My mother had PN also -- with no obvious cause. She never took any kind of medicine except pills for Hypertension... So I assume it is genetic.... My father had diabetes but I do not have it and my PN -- although it seemed to have begun with treatments for breast cancer 25 years ago, did not follow usual path... I had some numbness after treatment, then nothing for more than tenor twelve years ago when the tingling turned into the feeling that I was walking on bubble wrap. This progressed slowly and I am now numb beyond my knees. I can, however, walk well and quickly with a rollator..... It is all very odd..........
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My neurologist told me that PN is not genetic when I specifically asked about that when I was diagnosed a couple of years ago. Neither of my parents nor brother suffered from it. My neurologist is a professor at UBC (University of British Columbia) in Vancouver, BC, Canada and has a practice ( speciality in mobility cases) at Vancouver General Hospital. Are you sure that it is genetic? My neurologist said that it was neither genetic nor contagious- just random bad luck. I worry for my children and grandchild in their futures.

@pnpam75 Welcome to Mayo Clinic Connect. We’re glad that you joined the group!
From the little research that I did, PN is hereditary or genetic. This site is from one of the departments at the National institutes of Health.
https://www.ninds.nih.gov/health-information/disorders/hereditary-neuropathies#:~:text=There%20are%20no%20standard%20treatments,foot%20or%20other%20skeletal%20deformities.
Here is a discussion/support group specifically for those with PN. https://connect.mayoclinic.org/group/neuropathy/. There are many different topics and you could ask your same question there.
Do you think you can model to your children/grandchildren how to live with PN so that if they ever get it, they will have a positive role model?

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.

My Rheumatologist after many tests and pain etc. she told me my case is severe. Not only am I dry but have pain but I also have pain from Small Fiber Neurology. I had a CT Scan of my lungs and I have Small groundglass infiltrate rt. upper lobe. What is that? Does anyone know?
Thank You

Hi @penn, reading a CT scan can be scary if you're reading it before discussing with your doctor.

Ground glass opacity (GGO) refers to the hazy gray areas that can show up in CT scans of the lungs. Ground glass indicates the need for more questions and possibly more testing. "GGO can be due to many conditions. Sometimes, the cause is benign. Other times, it may be the temporary result of a short-term illness. However, it can also indicate a more serious or long-term condition." https://www.medicalnewstoday.com/articles/ground-glass-opacity#definition

Do you know why your doctor ordered a CT scan of your lungs? When do you meet with your doctor to discuss?

penn,
pSS is so much much more than just dryness (SICCA) issues, as you are proof of this. It would be nice to be told the whole truth about pSS, when diagnosed. After my positive lip biopsy and seronegative testing, I happened to be seeing a doctor for sleep apnea ...he referred me to a Pulmonologist, it was very confusing for me, no one was keeping me in the loop about why I was seeing a Pulmonologist. Even the dr. thought he was seeing me because I had asthma, except I have never had asthma and don't have it now. Fortunately, he was 1 of 3 drs over the years that was thorough and listened to me.
I had the small ground glass infiltration with atelectasis and scarring and low levels of fluid in my lungs. He really stuck with me when he realized I was not there for asthma, but for pSS. He even did the whole slew of blood tests for LSE, he thinks I may have the early stages or I could have LSE and stay seronegative for years. He had me take Doxycycline for a month +-, wanted me to take it daily going forward, I told him no. I have resistance to many antibiotics, I have bad side effects when I take them longer than just a week +-.
He wanted to put me on Prednisone pills and a steroidal inhaler..again I said no way. I had Prednisone years ago, for only 7 days, titration up, then down...it was more like entering hell on caffeine. I gained 10 lbs in 7 days (took over 9 months to lose the weight). I shook constantly, I was taking Benadryl to help hide the shaking, since I had to attend a business conference during this time. Tired and wired, it the perfect description. We finally agreed on Alvesco inhaler, started low dose, but it was working and no bad effects, so the dose was increased a bit. It also really helps with the chronic painful cough, from the pSS. Over about 2 years of being in close contact with the Pulmonologist, my CT showed improvement of the atelectasis, small scarring and limited trace fluid. I had significant issues with phlegm during the 5 years that my PCP was being lazy on treating my cough. This is also part of my pSS.
When I have bad attacks, I gargle with room temp. carbonated water. Best weird treatment I've ever found. Beware, if you try it, I suggest doing it over the sink first...until you find out how your throat will react. The first time I did it, I put too much water in my mouth and as I started to gargle, I choked on it and spit it out all over the floor 🤪.
I have small fiber neuropathy also.
The RH I had, I was with Kaiser Permanente HMO then, but I had to leave it because I turned 65., the RH, I never met. Because I was seronegative, she just brushed me aside. When the joint pains really picked up the pace, her answer was " unless your joint is red, hot and very swollen, I am too busy and underpaid to deal with you. Call your PCP". What a wonderfully narcissistic dr.
I would be interested in your path to diagnosis(s), treatments, testing you did. Do you have multiple autoimmune diseases? Do you have other diseases? Did you get small fiber nerve testing? I have not, it's much different than just fiber nerve testing, which is for large nerves only. What did your RH know that made her say your case was severe?
What I know about pSS is from my own research. I love Sjögren's Advocate site. She is a patient with SS, but she is also a doctor. She gives great insight into the multitudes of symptoms and manifestations. She does not provide medical treatment as a doctor. She explains that huge complexities and that truly most doctors, even RH, do not have a clue about how widespread SS is.
It is medically negligent the way most everyone views SS. ShelleyW

Colleen, I lost the information you sent me about Auto Immune Research, Genetics something like that. Can't find it, I should have printed it out!!!
I hope you know what I mean? I'm sorry!!

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!

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?