Undiagnosed Autoimmune with back pain, spasms, and stiffness

Posted by amberlynne5 @amberlynne5, May 10, 2019

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!

Liked by Lyn

@sylvia01 and @judyannmac, you may also be interested in these 2 discussions on Mayo Clinic Connect:
– Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrom/
– Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

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@amberlynne5 It’s been a little while since your original post. I am wondering how you are doing? Are you still experiencing flare-ups? Have you been able to find any answers?

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You and I have many of the same symptoms, and I was diagnosed with Ankylosing Spondylitis. Did your rheumatologist test to see if you carry the HBLA-B27 Gene???

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Sounds like an autonomic nervous system problem that really cannot be diagnosed by general medical doctors. I would relax and learn to manage what you can. Medicine like muscle relaxers have side effects like dry mouth so not the greatest option.

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@poppysue

You and I have many of the same symptoms, and I was diagnosed with Ankylosing Spondylitis. Did your rheumatologist test to see if you carry the HBLA-B27 Gene???

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Hi @poppysue, welcome to Mayo Clinic Connect. You mentioned Ankylosing Spondylitis, so I wanted to let you know about these related discussions:
– Ankylosing spondylitis, losing feeling in my legs https://connect.mayoclinic.org/discussion/diagnosed-with-ankylosing-spondylitis/
– Ankylosing Spondylitis + Osteoporosis https://connect.mayoclinic.org/discussion/ankylosing-spondylitis-osteoporosis/

I look forward to getting to know more about you. Did you have genetic testing?

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I’m sorry you’re having to deal with all these issues. It’s so frustrating to be so sick and miserable and have Drs. Say. “Everything looks great”. I was finally diagnosed with Undifferentiated Connective Tissue Disease. I just feel like UCTD is a dump spot for when Drs don’t know what you have. I could totally be wrong about that though. The last few years I have had so many tests done because of so many symptoms. When reading your post and all of your symptoms I just kept thinking MS. The part about electric shocks. I wish you luck. Maybe find a new Nuerologist

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Wow, I started reading your post and was kind of confused thinking, when did I write this? 😉. Mine started about 3 years ago, nearly exactly except some additional symptoms. I will tell you I have learned there are so many ppl with similar situations and can’t get any answers. Be your own advocate, don’t give up, and don’t let Drs make you think you are crazy.

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@bryan_in_dallas

Sorry, to hear about your situation and believe me, I know how you feel. I’ve been dealing with chronic muscle pain (everywhere) and daily headaches, plus osteoarthritis in back and hips, for 15 years now. One word of advice. If you want to go to Mayo, do your homework first, and get a doctor’s referral. Or multiple doctor referrals. I recently tried to set up a first appointment there; everyone was very nice and I spent hours going thru the preliminary questionnaires, then a week later, they told me they were denying my request because they have too many patients and determined they can’t help. I’m not trying to be negative, but if I knew that was even a possibility, I would have approached Mayo in an entirely different way. I wish you all the best and hoe you’re able to find some relief. BD

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That’s very good info to know about trying to get in with Mayo. Thank you.

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@lorilegg

I’m sorry you’re having to deal with all these issues. It’s so frustrating to be so sick and miserable and have Drs. Say. “Everything looks great”. I was finally diagnosed with Undifferentiated Connective Tissue Disease. I just feel like UCTD is a dump spot for when Drs don’t know what you have. I could totally be wrong about that though. The last few years I have had so many tests done because of so many symptoms. When reading your post and all of your symptoms I just kept thinking MS. The part about electric shocks. I wish you luck. Maybe find a new Nuerologist

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I have same diagnosis. I take plaquenil and helps with energy and joint pain. I have so many other symptoms that flare, and all I can think is this is the prelude to MS or lupus. I’ve recently started getting a squeezing feeling around my rib cage, literally like I’m being squeezed. Keep searching. Good luck.

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