Does it seem like autoimmune diseases are on the rise?

I just decided to see what was in my G-mail and I found a wealth of information from others that are in the same predicament that I am in. I am going to add to the treasure of knowledge and let you know that a friend put me on to a Nova episode that was on PBS a few days ago and it is very informative as to CBD and the explosion of people using it for pain, sleep and a host of other information. Also, PBS has a show about pain which you will have to look for but it may be worthwhile. I have Adhesive Arachnoiditis and a few autoimmune issues. I have RA, Raynauds, Sjogrens and other issues and don't dare take NSAIDS by mouth. I'm busy at the present time, but I plan on diving in to the information that this group has divulged and I will share what I know. Hopefully, we can help each other through the maze of diseases and give each other some hope.

Hi SweetSurrenderwi, I’m glad you found the treasure trove of information from Mayo Clinic Connect members in your Gmail and that you will add your experiences to. You mention a number of conditions, so allow me to direct you to a few discussions relevant for you.

- Arachnoiditis: Looking to talk with others https://connect.mayoclinic.org/discussion/arachnoiditis/ (See more discussions about AA in Spine Health group)
- Rheumatoid Arthritis (RA) - Introduce yourself and meet others https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/
- Raynaud's Syndrome https://connect.mayoclinic.org/discussion/raynauds-syndrome/

What would you say is your top tip for others others managing multiple autoimmune conditions?

Our journeys are quite similar, sadly…It is terribly frustrating to not have answers and face pain. It’s amazing how so many people with autoimmune diseases and neuropathy suffer every minute of the day. I’ll keep searching for answers and hopefully someday some treatment.

I hope for you the same. Please keep in touch!

Yes-today was really hard. Thank you so much for your kind words. Something else which I find interesting too is that my last liver tests show an AST of 41H and an ALT of 34H. My doctor is having me do them again because of the elevation.May I ask what your autoimmune diseases are? Take care of you-I will keep you in my prayers.

I’m sorry your day was rough. Those liver enzyme levels are high, but not overly so. Try not to worry yet. You already have too much to worry about!

I’ve had Raynaud’s Syndrome for 15 years. I had symptoms of Primary Biliary Cholangitis (PBC) for about 10 years, including slight numbness/encased feeling on the bottoms of my feet and itching on my back and ankles. My primary dismissed the symptoms until I developed extreme pain on my side a little more than two years ago. I was diagnosed with stage 3 liver cirrhosis. A liver specialist determined it was from PBC. I was blessed to make it on the transplant list about a year later and received a donor liver.

Last October I developed hand tremors, which were thought to be from one of my immunosuppressive meds, but in November my right leg and entirety of both feet became numb and tingly, and I was having back pain. In March I saw a neurologist who diagnosed Sjogren’s Syndrome. The numbness and tingling are now in both legs and arms. And the back pain continues to get worse, along with joint pain and stiffness. And, the itching is back. Oh, and a sore throat I’ve had since May. Plus, the Raynaud’s had gotten much worse…definitely unsettling as I live in Vermont and winter is coming! The connectivity of some autoimmune diseases is what I call it…that and bad genes!

If you don’t mind sharing, when did you begin having symptoms?

Thank you for sharing-I always noticed a numbness in my right foot big toe but never thought much about it. Next came the bubbly feeling in my legs at night but still never made much of it because I felt fine during the day. Always had tinnitus as long as I can remember. Sometimes when I over did things I would get numb feeling in legs but it would go away. I have had acid reflux for decades. I also have had optical migraines for decades. Two children-two c-sections and a hysterectomy at age 32 (fibroids). Myofacial pain syndrome off and on for years. Occasional bad muscle spasms in back. Last December I was sitting at the computer for a long time. I am a photographer (a hobby) and was working on a job. When I got up I had huge pain and saddle paresthesia. At first doctor treated it like muscle spasm but then I started getting more bubbling and tingling and burning in legs-thighs and feet. Felt like I was walking in potatoes. Numbness came next in feet and legs this never left. No sleep due to pain. GP ordered a MRI of my back. Everything looked ok. Next I began with tingling in my hands just little pings. The back pain came next upper back. Everything hurt Everything felt so odd and confusing. Tingling and burning scalp-I could not even explain it all to family or doctors sometimes I thought I was crazy. How could all this be going on in one person. That is when I was sent to a neurologist for Emg and needle test all normal . Lots and lots of blood work all pretty unremarkable except low IGM. Three more MRI’s with and without contrast and a skin punch biopsy. All were normal. I finally agreed to try gabapentin ( not a fan of meds) but my life as I knew it was gone. The gabapentin helped a little I went very slow with it. It took months to work up to 1800 mg I still had pain. Next we tried Nortripline 10mg and worked up to 30mg.Things were a lot better. I still could feel all the strangeness and paresthesia but the pain was a lot less. I have slowly tiered down on the gabapentin and am holding at 900mg. Things were better I felt like I got some of my life back and started doing some things again. I felt better even with this strange new body and all its sensations. Sadly -lately I feel worse and have faciculations and lots of cramping. I get these waves of chills too. Here I go again. Noew my neuro doc has ordered a sensory motor noropathy panel it gets sent to the University of Washington lab. I have to pay for it out of pocket-pretty expensive.I don’t want to have anything really bad but I want an answer because I’m scared and don’t know where this is going. It is such a double edge sword. I am sorry you are going through this too but It is nice to talk with someone who understands.❤️ Take care-hope this wasn’t to long of an answer.

It's been 1.8 years of progressive debilitating symptoms yet doctors from neurologists to endocrinologist to cardiologist and gastrologist can not yet, even after dozens of tests. X-rays, blood and urine workups etc, can not figure out what I have. Only thing I know are these symptoms have morphed and episodes have progressed from a few times a month back in Dec 2019 to now almost daily episodes of frightening and debilitating symptoms.

My symptoms started as: pins. Tingling, numbness in my feet and calves along with visual disturbances and racing heart.
With a few months the pins, needles and numbness spread to my hands and face with muscle twitching throughout my body. Every episode starts with heightened visual disturbances and pins, needles and numbness in lower legs and around my mouth and chin area. THE other symptom I now have along with all the other symptoms is bowel issues. When I have these symptoms I now get bowel issues where I have to get to the bathroom right away to have a BM. A few times I did NOT make it in time and went in my pants. This is horrifying. I fear going out anymore.

Then more symptoms have started up with a sensory overall body sensation, sensory shift in how my overall body feels which is a very sick feeling, an overall sick feeling from head to toe where my entire body feels sick, close to death type feeling.

I live a healthy lifestyle, am not overweight. Drink lots of water and eat healthy. I do not smoke not drink alcohol YET my body is sick, head to toe symptoms etc.

Tons of blood work come back negative. MRIs and Cat scans are negative, even blood test called Paraneoplastic test looking for cancer cells in my blood is negative. EMG, Nerve conduction test. EEG'S, ECHO, STRESS tests, I even have a LOOP recorder implanted in my chest to watch what my heart is doing doing these episodes YET heart rhythm is normal-only sometimes a racing heart is shown.

Endocrinologist ran all tests including 24hour urine several times, stool samples etc yet all negative.

Cat scan looked for adrenal tumors etc and only found pockets of inflammation in my intestines yet blood tests for inflammation was negative.

MRIs showed degeneration in cervical and lumbar and thoracic spine with some spine cysts yet nothing concerning and no impingements at all on my spinal cord.

MRI of brain several times was normal except recent MRI of brain last week showed One " nonspecific FLAIR abnormality in Centrum" of brain YET radiologist chalked it up to nothing concerning. No lesions found in brain or spine.

I'm 61 years old so they chalk up neck, Spine and brain issues with aging.

Not one Specialist or Primary care doctors OR many trips to ER can figure out what is wrong. Not ONE doctor over almost two years can figure it out. And many of these doctors are so nonchalant about my suffering. It's unreal how many doctors are so cold hearted about my suffering and many want to blame ALL these progressive symptoms on ANXIETY and try to quickly write me a Rx for anxiety meds.

And now I am on a ONE YEAR wait LIST at MAYO.

I give up.

I also forgot to mention that I was diagnosed about 10 years ago with arthritis in both my knees and the tops of my feet and several of my fingers.

Also about 20 years ago I started having blurred double vision and the ophthalmologist related it to me going through menopause and the muscles relaxing including my eye muscles and now I have prisms ground into my lenses of my glasses to fix my double vision.

I'm so sorry...it seems like many of us suffer from daily pain! i will also keep you in my thoughts and prayers. I have Scleroderma, sjogrens and Raynaud's and many GI issues and struggling every day. Linda

I’m so very sorry to hear your traumatizing ordeal. It’s such a crime in our country that you are suffering so and need to pay for costly tests which may help provide some light on your varied symptoms. It takes answers to at least give one hope and some sort of path forward. I’m sure there is an answer for you and you just need to find the right provider to think out of the box enough to find it. Not an easy task I know.

I can tell you from my experience, at least, that chills and terrible cramping are a liver disease symptom. So, perhaps your follow up hepatic labs may reveal more. There are several autoimmune diseases that can cause liver disease.

Have you been on the website smartpatients.com? There are some good patient discussions on it by people with autoimmune diseases. I was reading through one today where people listed the multiple autoimmune diseases they have. Like Connect, it may or may not offer answers, but I find patient guidance and camaraderie very helpful. I’ll be thinking of you and sending many positive and hopeful thoughts your way.