Undiagnosed Autoimmune with back pain, spasms, and stiffness

Posted by amberlynne5 @amberlynne5, Fri, May 10 9:30am

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

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.

Liked by Lyn

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Amber, Don't think you are alone! Many feel the same way and are frustrated when you have Pain and other symptoms you know are real but they tell you they don't know what it is! So they send you to some other kind of doctor. I've been through them all. As I like to say "I Glow in the Dark & have no Blood left in Me"! LOL! As my PCD says the organization, pushes doctors to do more tests!
Was taking to my dogs vet who has been one for 40 years about my Problems. She said when she went to Vet School we knew all the answers, but now we know nothing!
Sad But True.
I came down with what one doctor says is Lyme, but it is due to the fact of my symptoms and his past experience with dealing with Lyme people!. The rest don't know. I have been going through hell for the last ten months with what a lot of you described. Other than the sore joints now, my main problem now is the constant headaches. The neurelogist is trying to treat them as Migraines. Started the Botox shots. Felt 10 times worse!She's Fired!
Through all of this not much has improved! Luckly I have a PCD who helps with the headaches and soreness. (Leave it at that) And my orthopedic dr. who comes from the south and was trained as a Microbioligist. He steps out of his joint world and helps me deal with the things I go through. He is very farmiliar with Lyme. And as you said in the post the Tests for Lyme are worthless. As the one doctor from the start of this paragraph.
I have done a lot of research on Lyme. There are many posts now and groups on the internet about Lyme. Try looking at some of those.
My point is you may or may not have Lyme but it opens you up to many other possibilities of other diesases.
Last, in the last month, with the exception of the two doc's I mentioned, I have fired the others. Stopped taking all of the meds they had me on, some having to back off with over a period time, and am taking over care of my body! Have used that philosopy for the last 20 years, I'm 72, had stage IV colon cancer suvivor 20 years ago, then had a toxic reation to the chemo and almost died. Learned then to listen to my body and it will cure itself, by listening to it.
PS, Don't apologize for the length of your post! This Mayo site is the Best way to talk to others with same or different issues. My families takes the attitude that I've been to all the doctors and they didn't find anything positive so I am not sick! Very hard to go through illness without family support.
I GUESS YOU COULD SAY THAT THIS SITE IS GROUP THERAPY FOR MANY OF US!
KEEP FIGHTING AND DON'T LET WHAT THEY SAY AS AN EXCUSE TO GIVE UP!
The moderators and eveyone who uses this site are Angels that will lend you much of the support you need.
Sundance

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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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Amber, yest I did have the Lyme test. Problem was I had two doases, zip pack and 21 day dose of Docsycyline prior to the test. Most research says the test will turn up Negative which it dod. A friend of mine had it also and it took them 4 test, last went to a Special lab in CA. before it came back positive. Go on line and read about Jimmy Walker Professional Golfer. I was watching an interview with him and that is when the Light Bulb went off in my head. Every symptom I had he had! It took him I don't know how many doctors he had to see before it came to light he had Lyme.
Lyme never goes away! It can come back at any time. I find rest is a good medicine. Plus strees and no rest really brings it on.
Sundance

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@sundance6

Amber, yest I did have the Lyme test. Problem was I had two doases, zip pack and 21 day dose of Docsycyline prior to the test. Most research says the test will turn up Negative which it dod. A friend of mine had it also and it took them 4 test, last went to a Special lab in CA. before it came back positive. Go on line and read about Jimmy Walker Professional Golfer. I was watching an interview with him and that is when the Light Bulb went off in my head. Every symptom I had he had! It took him I don't know how many doctors he had to see before it came to light he had Lyme.
Lyme never goes away! It can come back at any time. I find rest is a good medicine. Plus strees and no rest really brings it on.
Sundance

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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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I’m not giving up I just feel stuck I guess. And I’m not completely certain it is Lyme. I have questioned Lyme, Lupus, or MS. (As have my primary care and current rheumatologist. The first visit with the neurologist he said it was probably viral and it would go away on its own.) Whatever it is it has definitely effected my nervous system. If it were Lyme I would think my symptoms would get worse over time mine however wax and wane. It gets bad for about a week and then things get better for awhile making me think it’s going away but it always comes back. I’ve been going through these cycles since December of last year. The only symptoms I have had every single day since this started is muscle twitching throughout the body and back pain.

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@amberlynne5 Wow, you’ve had a rough time! You’ve probably seen every doctor in town by now. I’ve read where most doctors don’t know about autoimmune diseases except the few, frequently seen ones. But the incidence and types of autoimmune diseases is mushrooming. Mine is new since 2010, with less than 100 people diagnosed. Have you gone to a university medical center in your state? Doctors there can be very helpful! Plus, they’re all in one place. My sister and I have autoimmune diseases and we’ve both found help and treatment at the medical centers. And there’s the Mayo Clinic! I wish you the best of luck—it’s not easy. Becky

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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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Amber a couple of things I have learned over the last 10 months. Three other Autoimume diseases have similar symptoms. Pybromialgia and Cronic Fatigue Syndrome and West Nile . AND YES, LYME COMES AND GOES! Three articles you might read is one published by the CDC dated 1-7-2019 i believe. Aother and I think the best was from VTLyme.org dated 10-17-19. IT IS MY BIBLE ON LYME.The last was from Lyme Disease Action dated 12-31-18. Very comprehensive! VERY VERY GOOD!! GOOGLE LYME DISEASE AND THERE ARE SEVERAL VERY GOOD SITES TO LEARN FROM.
The last information site is by a Dr. Rawls. Informational but he always tries selling his medicine.
Again, Google Jimmy Walker, Professional Golfer and he tells about his strugles that are just like you, mine and other strugle and fights with Lyme. My Best fight is my own fight understanding Lyme and my body!
Learn as much as you can! It will help you take care of yourself!
My Blessings to you and all others of us who are a growing # who are fighting to learn more and make modern medicine to address Lyme and the seriousness it causes!
Sundance!!

Liked by lioness

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Mayo clinic sounds like a great option to me. Go for it & go to them. If any place can help. They can

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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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I am 41 and was born 3 months too early. I have been an Honor student, an athlete and a retired Army soldier. Two years ago I began to have all kinds of medical issues that I could not explain not even with all the research I have done. Now, it seems I have had medical conditions that made me physically unable to even join the military; however, I joined and I was pretty good at my job until all the mtbis(concussions) started to pile up. Last year, after a Veteran's Day celebration, it was like an explosion went off in my head. Memories came flooding back and I became irate. Today, I am going through testing to check my heart after suffering blackout after blackout and then seizure after seizure despite taking prescribed meds. I am so scared of what the docs may find but the truth is, I pretty much know what they are going to tell me. I just want to know; even though I know I should be grateful and not angry, how do I keep from losing my cool when so many of my medical conditions might have been prevented?

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@stonereject45

I am 41 and was born 3 months too early. I have been an Honor student, an athlete and a retired Army soldier. Two years ago I began to have all kinds of medical issues that I could not explain not even with all the research I have done. Now, it seems I have had medical conditions that made me physically unable to even join the military; however, I joined and I was pretty good at my job until all the mtbis(concussions) started to pile up. Last year, after a Veteran's Day celebration, it was like an explosion went off in my head. Memories came flooding back and I became irate. Today, I am going through testing to check my heart after suffering blackout after blackout and then seizure after seizure despite taking prescribed meds. I am so scared of what the docs may find but the truth is, I pretty much know what they are going to tell me. I just want to know; even though I know I should be grateful and not angry, how do I keep from losing my cool when so many of my medical conditions might have been prevented?

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Hello @stonereject45, welcome to Connect. I'm glad you found us. One thing that I can tell you is that you are not alone. I am a Navy Vietnam vet but have not experienced what you have but I have had feelings similar to yours about not knowing what the doctors will find when you are undergoing exams. There is another discussion on Connect where your post will receive more visibility and you can meet other members who share similar symptoms and experiences. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion.

> Groups > Brain & Nervous System > Adult Life after a Traumatic Brain Injury (TBI)
https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

There is a website with some short 2+ minute videos that I've found helpful.
https://www.resilientoption.com/

@stonereject45 are you able to share your biggest fear or concern with what the doctors may find?

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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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@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

Jump to this post

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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