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Undiagnosed Autoimmune with back pain, spasms, and stiffness
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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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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2 ReactionsI 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?
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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1 ReactionAmberlynne5,
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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2 ReactionsHi 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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2 ReactionsThanks 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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1 ReactionSorry 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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3 ReactionsI 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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2 ReactionsI think plaquenil helps with inflammation. Try Pycnogenol and AHCC by Life Extension
Thanks for alerting me, John. The website works now. It was an issue on the ILADS end.
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2 Reactions