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

@johnbishop

Hi Carl @cbrackle, I noticed that one of your links doesn't work – it looks correct but I received a bad gateway error message when I click on the ILADS link. I did a Google search and found it and was able to access the website by the Google search. I copied and pasted the link again below but it also doesn't work for me.
https://www.ilads.org/
I'm tagging our director @colleenyoung to see if this is a coding issue or the site is being blocked.

John

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Thanks John, it does not work for me either.
If anyone wants to get there just type in ilads.org into your browser it should pop right up.

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@cbrackle

Amberlynne5,

Your symptoms and lack of diagnosis sound very similar to mine.
Sundance references a lab to send your blood to for Lyme testing. It is Igenex in Palo Alto, Ca.
https://igenex.com/
Any licensed Dr. can send your sample in for testing if they r willing. And like most things Lyme related it was not covered by insurance.
I had my Dr. send my blood sample in (very specific instructions -on their website) and came back positive.
I have been retested due to my doubts (most all my Dr.s poo-poo’d it) and I was positive again.

I’ve run the Dr. and specialist circuit several times w no results. Until I found an LLD (Lyme literate Dr.)
Go here to find some suggestions.
https://www.ilads.org/
Due to the stigma of treating “chronic” Lyme there are not a lot of drs who treat it and so it may take 1-6 months to actually get in to see one.

I would be glad to let you know more of my journey if you would like, but either way, get in touch w a local Lyme support group and they can give you advice on Dr.s and diagnosis.

God Bless and hope you find answers or at least a direction.
Carl

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Sorry I am just now cathing up on my emails, have been traveling all week. Spending a lot of time driving and thinking this week, I have come to a conclusion I have known for many years, IT'S YOUR BODY AND IF YOU LISTEN TO IT THEN IT WILL TELL YOU WHAT YOU NEED TO DO TO HELP YOURSELF!
I have been fighting Chronic Lyme Disease for almost a year now.
As I've said before, I Glow in the Dark from all of the pictures they've taken of my insides, and I barley have enough Blood to Survive they've taken so many samples! (LOL) And no one has any answers! Just Excuses!
Where has it all got me? To the conclusion that it is my Body and I know it Best!
I have put myself on a small mediction plan for my pain and make myself take rest when it is a certain time of the day.
Last week that meant stopping in a safe park or parking area I felt safe in rolling down the windows just a bit to get a breeze in. Laying my drivers seat back and sleeping for an hour.
I made it through a long without my body/mind not crashing as can happen with Lyme!
Will I ever be cured of it? NO! Will anyone else? Probably not! It's just doing what you know Best to Help Yourself!
Sundance 🙂

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I am so sorry this is happening. You aren’t alone. I would ask about having your spinal fluid checked. My grandmother had MS and her MRI was normal. Spinal fluid is how they found it. My ANA is also 1:320 and the rheumatologist has diagnosed me with Undifferentiated Connective Tissue Disease. I take plaquenil. I’ve been tested for Lymes too. The CDC states that so many bands on the test have to be positive for it to be ruled that someone has lymes. Look up the lyme crime. I’ve been on plaquenil since January and I don’t feel any different. To top it off I’m 32 and have a 2 year old to take care of. I’m not trying to talk about myself…just giving you info in my situation so maybe it can help you.

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I think plaquenil helps with inflammation. Try Pycnogenol and AHCC by Life Extension

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@johnbishop

Hi Carl @cbrackle, I noticed that one of your links doesn't work – it looks correct but I received a bad gateway error message when I click on the ILADS link. I did a Google search and found it and was able to access the website by the Google search. I copied and pasted the link again below but it also doesn't work for me.
https://www.ilads.org/
I'm tagging our director @colleenyoung to see if this is a coding issue or the site is being blocked.

John

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Thanks for alerting me, John. The website works now. It was an issue on the ILADS end.

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@amberlynne5

So far I have stayed local with my drs. My primary wanted to send me to Mayo Clinic in Rochester several months ago. However I felt the local drs had not done everything they could do for me so I requested a second opinion by another local rheumatologist. She seems very on top of it and is wanting to help get to the bottom of all this but she is now sending me back to the neurologist (who refused to do any further testing the first time around). I feel like I’m stuck in this loop of going back in forth between the rheumatologist and the neurologist with no answers for anything.

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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.

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@samaiam83

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.

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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??
https://connect.mayoclinic.org/discussion/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

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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

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@tigerlilly

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

Jump to this post

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.

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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.

20190624_160358

20190624_160411

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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?

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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
https://www.thedp.com/article/2019/06/penn-medicine-autoimmune-disease-research-center

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@johnbishop

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
https://www.thedp.com/article/2019/06/penn-medicine-autoimmune-disease-research-center

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Thanks John, very interesting stuff.

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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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@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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Thanks for your recent reply. I will definitely check that out.

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