Undiagnosed Autoimmune with back pain, spasms, and stiffness
Hi, I’m hoping that by posting my situation I can connect with people who have similar symptoms and possibly get me closer to an answer regarding what is going on with me.
My symptoms have gradually worsened in a 2 year time frame and got drastically worse last December. Things have gotten better since December but I seem to be having new issues since then. I have had issues with my back for approximately 10 years on and off mainly tightness of muscles in my back always in the right scapular area. I have always seen a chiropractor for this it gets better after but soon comes back. 2 yrs ago I stayed having pain in my right wrist and my knees were bothering me. I did not seek medical attention for this as the symptoms would come and go and I could go months in between of having nothing until it acted up again. I summed it up as I was working out to much, I was doing CrossFit type classes and running quite a bit.
Last fall things really changed however, I started having these terrible back spasms? It felt like a bolt of electricity down my spine and the pain would radiate out. It hurt to move or breath. The pain would eventually ease up but that would take almost all day for any relief. I had 3 of these episodes of which I seen my chiropractor for and he said he couldn’t make much since of it. Then I started having electric like shocks in the left side of my face this lasted for about 2 mos. During this time the muscles in my back grew drastically stiffer. The stiffness involved my whole back and neck. I finally went to my Dr. who sent me to Physcial Therapy. I went to 2 sessions and quit because they told me they were not for sure what the issue was and things were getting worse. I ended up back at my primary cares office due to worsening of symptoms. I started having low grade fevers every evening along with chills. I had no appetite (I ended up losing 10lbs in about 3 wks time). I have muscle twitches throughout my body, this has been constant since it started in early December. I have them every day regardless of how I’m feeling they seem worse when I feeling bad though. I had tensions headaches that were horrible no over the counter pain medicine would help. I also had an extremely sore throat and at times it felt like something was stuck in my throat this also caused trouble swallowing. I also had joint pain and muscle aches all over my body. I also suffer extreme fatigue. Heart palpitations, I had every test ran on my heart and they couldn’t find anything wrong. During this time I had tons of lab tests run and they found I had a positive ANA- 1:320, low positive Rheumatoid Factor- 37. I was sent to a Rheumatologist. Since this time I have seen 2 different rheumatologist the second I am still seeing today between the 2 I think they have ran every lab they could run and have only found a positive anti-RO SSA- >8.0. I had a salivary gland ultrasound that came back normal and a Schirmer test which was also normal- 18-20mm in both eyes for 5 mins. I had an MRI without contrast of my brain and cervical spine which came back normal. Lyme disease test which came back negative but I have had several drs tell me that that test is worthless. Which makes me second guess it’s findings. I also had an EMG done on arms and hands only which only found I had mild carpal tunnel. Dispite all the tests I have had done my rheumatologist has not been able to make a diagnosis. Y
While things have gotten a bit better since December I still have “flare ups”. I’ll have days and weeks I almost feel like my old self then all of a sudden I have several days in a row or weeks in a row where all my symptoms come back.
My rheumatologist has sent me back to the neurologist and I’m currently waiting for my appt. She says I need re-evaluated by him due to some new neurological symptoms I’m experiencing. Those include pins and needles feeling in my hands at night, a vibrating sensation in my left thigh and also my feet. The left side of my tongue and lips feel numb/tingling. And the persistent muscle twitching which has not resolved in its own. I also have trouble thinking at times (brain fog).
I’m sorry for the long post but I wanted to put it all out there to see if someone else has had anything similar. To add I’m a 33 yr old female and have been a type 1 diabetic for 32 yrs. my diabetes is very well controlled. My endocrinologist has ordered every lab she can to rule out anything on her side which included a celiac panel, adrenal panel, B-12, and there was one other but all of those tests came back normal. My ferritin level is low this was found about two years ago and they were never able to figure out why. When this flared up in December my primary checked my iron and the ferritin level was 19, borderline low which is what it always has been. She rechecked 4mos later and it had dropped to 6. I am back on my iron supplements currently.
Thanks in advance to anyone that can add any info that would be helpful to me figuring this out!
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@amberlynne5 have you decided to go to a university med center? Your rheumatologist can write a referral. Being a human ping pong ball won’t help! Keep in touch, we care.
Do you see someone at the Mayo clinic for diagnostics? In my opinion you are deficient in basic but necessary nutrition. I read about holistic medicine. Be sure to keep a log about you flares. Date, times and symptoms, doctor visits because this is relevant down the road. Documentation is KEY if you are not able to work. Read Doctor Fred Pescatore ' book "The Truth". Mayo's Rheumatology I think is the best place to start. See a mental health doctor because the stress works on the mind and spreads to the body. Your symptoms are real so misconstrue that you are mental. I have a few other ideas. I am not a medical person I just want try correct some of my health issues by learning from books etc. ST
Hi @tigerlilly, You'll notice that your personal email address was removed from the message above. We recommend using the secure private messaging function to share personal contact information rather than on the public forum.
Hello @samaiam83, Welcome to Connect. There is another discussion where your post may receive more visibility and you will be able to connect with other members with similar symptoms. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:
> Groups > Autoimmune Diseases > Undiagnosed Autoimmune??
Does your primary care doctor have any suggestions for the pain in your knuckles? I have no medical background or training but I've had gout in ankle and the pain was really bad. Mayo Clinic has some information on gout here: https://www.mayoclinic.org/diseases-conditions/gout/symptoms-causes/syc-20372897
My pcp original dx was lupus due to PGL on the left side and symptoms at the time. Biopsy came back inflammatory. ANA was positive. But meds (mostly presidone) didn't help. Lost insurance so treatment stopped. Began to have several GI flare ups. Got insurance back. Had upper and lower scope. Came back postive for inflammation in the left colon and EoE. Was told it was due to stomach acid and given an otc antacid even though I have had no heartburn or symptoms. No improvement. Still struggling to swallow foods.
But now I'm back into a flare cycle. I'm physically exhausted. Headaches. Fever. Left sided weakness and cognitively not there. But these flares always start with these bumps on my knuckles. Non-itchy but painful bumps. I am far more clumsy and my foot dragging is getting worse. Only pain I have is spasms in my neck, headache and sporadic stomach pain due to either swallowing or diarreah. The only reason I maintain my weight is because I force myself a high calorie and fat diet or I'd lose a lot of weight and become sicker.
Is there something specifically I need to be demanding from my PCPs and GI team? I can't get into Neuro until end of August. I'm frustrated with the lack of care I get because I have public insurance.
Hi @samaiam83 I wanted to join @johnbishop in welcoming you to Connect. You may have noticed i moved your post to this discussion on undiagnosed autoimmune so that you can connect with others with similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.
I also wanted to tag, @cbrackle and @sundance6 as they have experience with undiagnosed conditions and may be able to offer you support.
Back to you @samaiam83 as John asked, what does your PCP have to say about your knuckles?
Just saw an interesting article on autoimmune research that I thought I would share with you.
Penn received the grant from the National Institute of Allergy and Infectious Diseases in June. The center will house two clinical trials, as well as a collaborative project with other ACE centers. The ACE at Penn will bring together professors of dermatology, neurology, and pathology to study the role of B cells in autoimmune diseases.
Penn receives $4.5 million to create center on autoimmune disease research – By Harshita Gupta 06/19/19
Thanks John, very interesting stuff.
I am a 45 year old male and I have had similar symptoms. Find a neurologist that s familiar with GAD 65 and ask to see if they can do an antibiotic GAD 65 blood test. I have a disease called STIFF PERSON SYNDROME and those symptoms are relatable. The disease does affect women more often than men and it is very rare. I pray that this isn't what you have but I hope this helps put you in the right direction.
Thanks for your recent reply. I will definitely check that out.