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

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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@amberlynne5

Sundance, thank you for your support and response. I am very frustrated at this point. I feel my new rheumatologist is trying to get to the bottom of this but getting all my drs on the same page as been a nightmare to say the least. I was sent to a neurologist in the beginning because my primary and the first rheumatologist I seen felt more needed to be done to rule out MS however the neurologist refused to do any more testing because I had a previous normal MRI of the brain. So once again I am being sent back to him by a different dr. I still question my Lyme disease test as to wether it was a true result. Did you have a Lyme disease test if so I’m curious as to wether yours came back positive or negative?

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I would investigate POTS, Postural Orthostatic Tachycardia Syndrome. Usually, this causes a multitude of symptoms but is not known by most medical providers. It is disorder that causes problems with blood flow and tachycardia. If you feel lightheaded and have unrefreshing sleep after waking in the morning and it gradually improves throughout day, that is typically an indicator. The longer you stay in bed, the worse it would get. If these symptoms don't sound like a match, I would look at other central and peripheral nervous system problems.

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@awinkler73

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.

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I have dealt with pelvic pain the past 18 years, diagnosed with vulvodynia, many medications over the years and been referred to several out of state OBGYN specialists, acupuncture, physical therapists, had chiropractic care. None have given no relief to my pain with the terrible spastic pelvic floor feelings of constant pain 24/7 during these years with sitting and lying down. My central nervous system seems to always be in "overdrive: I am a 75 year old woman and this began when I was 58. I was referred to a neurologist two years after the symptoms first started, MS was ruled out, my reflexes were overactive, and my Antigad antibody level was 0.04 at that time. A mild case of Stiff Person Syndrome was mentioned then, but stated that it was not a conclusive diagnosis, but having the antigad number was "interesting". Baclofen, diazepam and several medications were tried during several months and did not help at all. Then referred to the same neurologist seven years later, Antigad antibody level at this time was .011, and the neurologist said he did not think the reading was suggestive of a stiff person syndrome, but "was interesting". Then referred to him again recently. MRI's were taken of my neck and back this time and were normal other than age related degeneration which is considered normal for my age. He did not do blood work on my recent visit, and gave me a prescription for Diazepam 2 mg. to take 3 x daily. It isn't helping. I see him again in 2 months. He now is treating me for "perhaps" a "mild case of stiff person syndrome." My symptoms still remain the tingling in my entire body from head to toe (no shaking- just always conscious of the tingling sensations), this terrible pelvic pain with sitting and lying down, and some stiffness within the last 6 months or so when getting up in the morning, which I attribute to age related arthritis, perhaps. My lower back now hurts and the pelvic pain and tingling now extends down both legs and into both feet. May I ask what was or is your AntiGad 65 level? (My sister died at age 56 with a paraneoplastic syndrome that was caused from stage 2 carcinomic lung cancer of which she was in remission after 2 months of aggressive chemo and radiation treatment. She never felt better after the remission and it was found that she ah the Antigad .Anti-HU gad that was discovered a month before she died). I wish there was more input within the Mayo Clinic Connect site regarding Stiff Person Syndrome. From what I am researching, I understand that this is a rare autoimmune disease. Have you been treated at Mayo Clinic? At this point, I am still unsure if I do or if I do not have Stiff Person Syndrome.

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@judyannmac

I have dealt with pelvic pain the past 18 years, diagnosed with vulvodynia, many medications over the years and been referred to several out of state OBGYN specialists, acupuncture, physical therapists, had chiropractic care. None have given no relief to my pain with the terrible spastic pelvic floor feelings of constant pain 24/7 during these years with sitting and lying down. My central nervous system seems to always be in "overdrive: I am a 75 year old woman and this began when I was 58. I was referred to a neurologist two years after the symptoms first started, MS was ruled out, my reflexes were overactive, and my Antigad antibody level was 0.04 at that time. A mild case of Stiff Person Syndrome was mentioned then, but stated that it was not a conclusive diagnosis, but having the antigad number was "interesting". Baclofen, diazepam and several medications were tried during several months and did not help at all. Then referred to the same neurologist seven years later, Antigad antibody level at this time was .011, and the neurologist said he did not think the reading was suggestive of a stiff person syndrome, but "was interesting". Then referred to him again recently. MRI's were taken of my neck and back this time and were normal other than age related degeneration which is considered normal for my age. He did not do blood work on my recent visit, and gave me a prescription for Diazepam 2 mg. to take 3 x daily. It isn't helping. I see him again in 2 months. He now is treating me for "perhaps" a "mild case of stiff person syndrome." My symptoms still remain the tingling in my entire body from head to toe (no shaking- just always conscious of the tingling sensations), this terrible pelvic pain with sitting and lying down, and some stiffness within the last 6 months or so when getting up in the morning, which I attribute to age related arthritis, perhaps. My lower back now hurts and the pelvic pain and tingling now extends down both legs and into both feet. May I ask what was or is your AntiGad 65 level? (My sister died at age 56 with a paraneoplastic syndrome that was caused from stage 2 carcinomic lung cancer of which she was in remission after 2 months of aggressive chemo and radiation treatment. She never felt better after the remission and it was found that she ah the Antigad .Anti-HU gad that was discovered a month before she died). I wish there was more input within the Mayo Clinic Connect site regarding Stiff Person Syndrome. From what I am researching, I understand that this is a rare autoimmune disease. Have you been treated at Mayo Clinic? At this point, I am still unsure if I do or if I do not have Stiff Person Syndrome.

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Hi, @judyannmac – welcome to Mayo Clinic Connect. It sounds like it's been many years of pain and uncertain diagnoses. I've experienced pelvic area pain only with post-prolapse surgical repair, and it's a very tender area and a reverberating pain.

There are members of Connect talking about stiff person syndrome in a thread in the Brain & Nervous System group that you may want to check out https://connect.mayoclinic.org/discussion/stiff-person-syndrome/.

You may also be interested in this Mayo Clinic story about a patient diagnosed with stiff person syndrome https://sharing.mayoclinic.org/2019/04/08/rising-above-a-rare-debilitating-disorder/?_ga=2.71268176.1598879030.1583163810-1932626024.1568081026.

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My spouse had very similar symptoms x 15 years of testing. He took his records, including copies of his mri not just the report and was diagnosed with ms. No to say that is what you Have, but maybe a new set of eyes on your results.

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@glennaskinfolk

My spouse had very similar symptoms x 15 years of testing. He took his records, including copies of his mri not just the report and was diagnosed with ms. No to say that is what you Have, but maybe a new set of eyes on your results.

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Hello @glennaskinfolk — Welcome to Connect. Thank you for sharing your spouse's experience. It's great advice to seek a second opinion when you are unable to get the answers you need or the treatment doesn't seem to be working. How is your spouse doing now with MS?

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He. Is doing well. Into his third year of ocrevus for PPMS with no new lesions. Started The Wahls Protocol last June which has helped with fatigue and insomnia. He no longer takes sleeping meds. In fact, Vitamin D is his only med besides the Ocrevus. Walk or bike several miles per day. He still has the nerve vibration especially on waking. I am searching for clues or hints of what could help. It averages 3-5 on a scale of 10.

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Hi!
I had they same symptoms and ended up I had stiff person syndrome. But it took about 4 years to find out. I had two back surgeries and I still continued having real bad spasms and they couldn’t figure out the problem of why I continued with spasms. So, I saw a good neurologist after seeing several doctors and they didn’t know what I had. But, I’m glad Doctor Suzanne Gazda was able to figure out the problem. I’m so great full she was able to help me out.

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@glennaskinfolk

He. Is doing well. Into his third year of ocrevus for PPMS with no new lesions. Started The Wahls Protocol last June which has helped with fatigue and insomnia. He no longer takes sleeping meds. In fact, Vitamin D is his only med besides the Ocrevus. Walk or bike several miles per day. He still has the nerve vibration especially on waking. I am searching for clues or hints of what could help. It averages 3-5 on a scale of 10.

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@glennaskinfolk, I'm not sure if you were aware of these two sites for PPMS. They might provide some help.

National MS Society – Treating PPMS
https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Treating-Primary-Progressive-MS

Medical News Today – What to know about primary progressive MS
https://www.medicalnewstoday.com/articles/315475

Another good search tool is Google Scholar – https://scholar.google.com/

Liked by Lisa Lucier

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@johnbishop

@glennaskinfolk, I'm not sure if you were aware of these two sites for PPMS. They might provide some help.

National MS Society – Treating PPMS
https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Treating-Primary-Progressive-MS

Medical News Today – What to know about primary progressive MS
https://www.medicalnewstoday.com/articles/315475

Another good search tool is Google Scholar – https://scholar.google.com/

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I do receive newsletters from the ms society. Will search the other two. Thanks so much!

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@sylvia01

Hi!
I had they same symptoms and ended up I had stiff person syndrome. But it took about 4 years to find out. I had two back surgeries and I still continued having real bad spasms and they couldn’t figure out the problem of why I continued with spasms. So, I saw a good neurologist after seeing several doctors and they didn’t know what I had. But, I’m glad Doctor Suzanne Gazda was able to figure out the problem. I’m so great full she was able to help me out.

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Sylvia, do you recall what eventually led to your diagnosis of stiff person syndrome? Years ago my Antibody (GAD65) was 0.04 from bloodwork in 2004. In 2011 it was 0.11. Neck and upper spine MRI's done earlier this year were normal for my age (75). All my pelvic pain spasms began in 2002 and continue to now and are continuous when sitting and lying down. The pain is almost unbearable. My OBGYN diagnosed me when this began as Vulvodynia. However, he always said I have something else going on, since no medications and other modalities have helped. Was your stiff person syndrome diagnosed by bloodwork for the antibody listed above? I have dealt with this pain since 2002. If you were diagnosed from the antibody number, do you recall how high your number was? The neurologist did not do bloodwork when I saw him recently, only the MRI's. He has me on 2 mg. of Diazepam taken 3 times a day. It isn't helping with pain. My reflexes have always been overactive in my knees the 3 times I have been referred to him over the years. I have even taken up to gabapentin 3600 total mg per day in the past. At one time I took Lyrica 600 mg. per day. Still no relief. Many other medications through the years through other specialists my OBGYN has referred me to. The neurologist is treating me for a "suspected mild case of stiff person syndrome" due to the old two antibody numbers..

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