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!

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@rachelp

I have PMR, but I was stuck in the loop you are in for a long, long time. Your post has elicited some wonderful advice. I can only tell you what worked for me. After consulting four rheumatologists, three orthopedists, and my PCP, I referred myself to Mayo Clinic. I found that the doctor at Mayo had far more knowledge--in part because she had treated a far greater number of patients with PMR. My diagnosis had been complicated by the fact that my symptoms were atypical for PMR. The doctors I had seen prior to going to Mayo, in my opinion, knew only what they had covered in their autoimmune class--if there is such a thing. Any deviation from the typical symptoms had no meaning for them.

Whatever your disease, I suspect that your symptoms are atypical which makes a hard to diagnose disease even more difficult to diagnose.

As a member of this group, I have observed a common thread among the membership. It appears to me that the vast majority advocate becoming a strong self-advocate and engaging in extensive research. I had a good idea of what my problem was before I went to Mayo because of the research I had done. That boosted my confidence in my ability to read my body.

Never had I ever thought that I would seek treatment at an out-of-state clinic for anything. The realization my life would have no quality if I remained in the loop motivated me to begin looking at reputable medical centers that could possibly help diagnose my problem. I had to travel by air to the clinic and had to stay in a local hotel for about three or four days. It was worth every penny I invested.

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@rachelp @amberlynne5 @jgerstley1 It sounds like you are all doing a great job of advocating for yourself! It is so important. Also keep a good notebook of who you see, what they say, what tests were done, etc. Encourage the doctors to ‘think outside the box’. Many of them never learned much about autoimmune diseases because there weren’t many until recently. An author wrote about “the autoimmune epidemic” and now those diseases are more studied in Med school. I finally went to a university hospital and a neurologist had heard of my disease! But, she was young and still doing a fellowship. ( my flight was just called so I’ll finish later!)

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@jgerstley1

My wife seems to be in a similar boat. Her issues started with monthly sinus infections that would last 10 days. She was diagnosed with Chronic Variable immunodeficiency and started on IVIG years ago for low antibodies. No more sinus infections. 12 years ago started with profound fatigue, low grade fevers, chills and spent years in bed, not able to do much. Pain episodes started 1.5 years ago. She describes the pain as someone operating on her back without anesthesia lasting anywhere from hours to months. The pain usually starts in the back but has started over her eye, the leg ect and then spreads to the rest of her body. She is writhing in bed when the pain is bad and can take extremely high doses of opiods without much help. Last Sept. she spent 12 days on IV dilaudid in the hospital then discharged on IV dilaudid which she took until the episode resolved (2 months). She has been thru withdrawl numerous times as she will not take anything if she can hold off. Other symptoms include intermittent dysphonia (spasms of the vocal cords), intermittent diarrhea and constipation. Worst symptom is the pain but the fatugue, fever and chills are no fun either. Linda spent 4 days at Mayo, that is before the pains started and was a patient at the National Institute of Health for the Undiagnosed Disease Program. She has has an extensive workup from her wonderful immunologist, multiple neurologists, pain specialists, ENT...She has gone 3 months feeling great, then sx return. We have no idea what sets it off or what makes it better. Other Med problems include Hashimotos, Hypertension, premature ovarian failure (menapause at 36), CVID. She has been had extensive genetic testing and tested for Lyme. Still looking for answers.

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@jgerstley1 Good morning. Your wife has had a really rough time—it must be so difficult for both of you. Have you been been back in touch with Mayo or NIH to let the doctors know of the changes? Maybe they could work with your local doctors. Is it possible to get in touch with them?

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So sorry for your painful difficulties..I would really try and find a Dr that specializes in Lyme and have further testing . Symptoms sound quite familiar to a friend of mine as so many of yours appear neurological and Lyme does that it is such a new phenomenon by hat getting a real accurate result is very challenging
Good luck

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@amberlynne5

I should also add that when the first rheumatologist that I saw ran labs my C3 compliments were slightly low however when the second rheumatologist ran them 2 mos later they had returned to the normal range.

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Hi Amber, I'm sorry that this is a late response to your original post. I have hashimoto's thyroiditis it's an autoimmune disease. I want to encourage you to see your regular doctors along with a natural path or integrated medicine doctor. Integrated medicine doctors test your vitamins and minerals things normal doctors don't. Tingling sensations can often be low b vitamins. I have a lot of joint pain and do not have arthritis. Fish oil, hyaluronic acid, supplements helped tremendously. I take a multitude of supplements. Magnesium helps with pain. I also do vitamin IVs and that helps tremendously. Do research on your vitamins and minerals include that in your care. It's a journey and they all work together I also see a chiropractor monthly and that helps as well.

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Hi!
I’m sorry that your going through so much. I can feel for you because it took awhile for them to diagnose what I had. Some of the symptoms you have I had. Finally I found a doctor that was able to diagnose the issue. I have an autoimmune disorder call stiff person syndrome. Tell your neurologist to check your ANTI GAD-65. I hope I was a help.

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@sylvia01

Hi!
I’m sorry that your going through so much. I can feel for you because it took awhile for them to diagnose what I had. Some of the symptoms you have I had. Finally I found a doctor that was able to diagnose the issue. I have an autoimmune disorder call stiff person syndrome. Tell your neurologist to check your ANTI GAD-65. I hope I was a help.

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Thank you for the suggestion, I will check into that.

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@kjo1

Hi Amber, I'm sorry that this is a late response to your original post. I have hashimoto's thyroiditis it's an autoimmune disease. I want to encourage you to see your regular doctors along with a natural path or integrated medicine doctor. Integrated medicine doctors test your vitamins and minerals things normal doctors don't. Tingling sensations can often be low b vitamins. I have a lot of joint pain and do not have arthritis. Fish oil, hyaluronic acid, supplements helped tremendously. I take a multitude of supplements. Magnesium helps with pain. I also do vitamin IVs and that helps tremendously. Do research on your vitamins and minerals include that in your care. It's a journey and they all work together I also see a chiropractor monthly and that helps as well.

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@kjo1 May I ask how they determined your thyroiditis? It looks like I'm dealing with Lyme bands (but not cdc positive due to being short for the IgG band but have more than enough IgM (recent/current exposure). I have many symptoms (muscle/joint pain, hair loss, weight loss, thyroid nodules, occasional tingling near fingernail/tip, pulsation like twitches random areas of the body, poor sleep...the list is long) that can be listed under both Lyme/co-infections but still question my thyroid as Lyme and thyroid problems seem to overlap or be common. But - since my TSH was in normal range they dismiss any further testing like T3 & T4 so I was curious how you were diagnosed.

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@julz

Very good advice.
I was speaking with a woman at a hospital appointment ,whose 4 yr old daughter showed all the signs of lyme. (& she knew her daughter had been bit two months before the symptoms showed. )
Little girl tested negative for iLyme. The Mom didn't give up. After a year of her daughter getting worse with no help to discover what was wrong ( with her constant pushing the professionals) ,she heard of a Dr who specialized in Lyme D in Ottawa Canada. He treated her daughter aggressively & she is doing well. She Will always have some problems that can not be reversed but this Dr has stopped the progression of the disease.
Don’t give up. Go online & look for a specialist with good results.

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@julz I wonder how this Canadian MD treated her? I heard it goes undiagnosed and gets ignored as often in Canada as the US.

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@jgerstley1

My wife seems to be in a similar boat. Her issues started with monthly sinus infections that would last 10 days. She was diagnosed with Chronic Variable immunodeficiency and started on IVIG years ago for low antibodies. No more sinus infections. 12 years ago started with profound fatigue, low grade fevers, chills and spent years in bed, not able to do much. Pain episodes started 1.5 years ago. She describes the pain as someone operating on her back without anesthesia lasting anywhere from hours to months. The pain usually starts in the back but has started over her eye, the leg ect and then spreads to the rest of her body. She is writhing in bed when the pain is bad and can take extremely high doses of opiods without much help. Last Sept. she spent 12 days on IV dilaudid in the hospital then discharged on IV dilaudid which she took until the episode resolved (2 months). She has been thru withdrawl numerous times as she will not take anything if she can hold off. Other symptoms include intermittent dysphonia (spasms of the vocal cords), intermittent diarrhea and constipation. Worst symptom is the pain but the fatugue, fever and chills are no fun either. Linda spent 4 days at Mayo, that is before the pains started and was a patient at the National Institute of Health for the Undiagnosed Disease Program. She has has an extensive workup from her wonderful immunologist, multiple neurologists, pain specialists, ENT...She has gone 3 months feeling great, then sx return. We have no idea what sets it off or what makes it better. Other Med problems include Hashimotos, Hypertension, premature ovarian failure (menapause at 36), CVID. She has been had extensive genetic testing and tested for Lyme. Still looking for answers.

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@jgerstley1 Hello from Connect. I wonder if you’ve found any answers for the problems you wife had. It all sounds so difficult for her. I hope you’ve found out what going on. If it’s OK with you, will you tell us if there’s any positive news? Becky

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Has Mayo assessed you for Chronic Pain Syndrome or Central Sensitization Syndrome?

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