I will try to keep this as short as possible! I have been experiencing strange symptoms since March 2015, with no real diagnosis. It all started in March last year when I developed a twitching in the left side of my face along with mild left side facial swelling. Then I began having very painful headaches with the predominant feature of these headaches being a "burning" sensation on the top of my head, right side.
What followed from there was a plethora of symptoms that included extremely dry mouth with changes in appearance to my tongue, chronic sore throat that led to a diagnosis of LPR- the "silent" reflux, ~25-30# weight loss over 2-2 1/2 months, tremor in hands and later all over body twitching. Shortness of breath. Intermittent swelling in fingers with stiffness and developed bilateral bunions on feet. Chronic unilateral red eye and dry eyes diagnosis. Night sweats that just recently stopped. Frequent fatigue.
Beginning of year started gaining weight and was diagnosed with Hashimoto's. TPO antibodies were 909.91 and started Levothyroxine.
There's more but I'll stop there! "Burning" headache is back now after lasting about a month last year in April.
My rheumatologist thought possible Sarcoidosis or Sjogrens but all labs have been normal (other than the TPO AB). I am seeing a different Rheumatologist at the end of May for a second opinion but fear that I won't get any more answers.
Do any of these symptoms sound similiar to any of yours? Has anyone else had a similiar experience? It's so frustrating not feeling well, and not having any real answers. Sometimes I just feel like giving up.
Thanks in advance for any input/comments :)
You have had a whole bunch of symptoms. I don't know where the bunions fit in as that has never been mentioned on this site to my knowledge.
The thing is, Hashimotos has a really large amount of symptoms that can occur. I have a son with severe Hashimotos and it almost destroyed his life. He is on Methotrexate 25 mgm every week to help bring down his TPO.
The only thing I can suggest is that you see a endocrinologist and get a second opinion. It may be that putting you on Methotrexate or another med will help slow down the autoimmune attack on your thyroid and help get the symptoms under control. The thing is, every one of us has a different set of symptoms or different combination of symptoms with our autoimmune issues.
I have Sjogrens, bad Hashimotos, Myasthenia gravis and another autoimmune disease plus 2 immune deficiencies. I don't have a clue which symptoms are from what disease as each disease has similar symptoms. It really is a crap shoot and the best thing is to have the sarcoidosis ruled out or in and ask doc if there is a medication that will help slow down the autoimmune attack on your body. There is no cure for autoimmune and we often have to switch treatments to help our symptoms. Patience is definitely a blessing with autoimmune disease. I got symptoms at age 21 and didn't get diagnosed til I was 60 years old and am 73 now. Good luck. Irish
Hi Irish-
Thank you so much for your reply. It has truely been a rough year with these strange symptoms and no answers. I am a cancer survivor and the year long treatment for that was hard, but at least I knew what I was dealing with and what I had to do to get better.
As an RN this has been even more frustrating as I am in the medical field. From my research Sjogren's seemed to fit my symptoms but my labs don't support it. I wonder if Hashimoto's can cause the symptoms I've been experiencing- my Rheumatologist doesn't seem to think so.
It's so good of you to help others on here! Thank you again for your reply :)
I think irish is correct in suggesting an endo. A friend who worked at our local oil refinery had some symptoms that were similar to what you describe. There were toxic chemicals where he worked. He has been doing oil pulling for over a year. He's doing better now and can separate his fibro symptoms.
Thanks Joe-
I do have an Endo because I was diagnosed with Hashimoto's. I see him every few months. He hasn't been much help really. It was my Rheumatologist that prescribed the Levothyroxine for the Hashimoto's.
Hi INspirD.
It has been awhile since all of my symptoms started. But I do recall that I got a lot of different things that started happening at once as if someone had flipped a switch. I started having lots of joint pain. And I remember that my fingers and feet started hurting. Within a period of 5-7 months, I developed bunions on both sides of both feet. My feet hurt so much that even the cover on my bed hurt them at night.
When I saw a Podiatrist, he said that the changes in my feet were consistent with RA. Falling arches, dropped toes, bunions. It is not uncommon to have cross-over symptoms of different Autoimmune conditions. So while I have some RA features, I do not have full-blown RA. I still have intermittent pain & swelling in my hands/fingers & feet.
I hope that you are able to get some answers and relief soon.
Take Care.
SjoDry
I am a RN also and I swear that many doctors have a vendettaYo against nurses. It took me so long to get diagnosed and I knew it was autoimmune as they found nothing else. They just figured I was "nutz" and I was not. I was sick. It took me 39 years to get diagnosed with Sjogrens and I had the symptoms of that and myasthenia and probably Hashimotos all those years.
I would not give up and just kept making apt and going back to the docs who were good to me so that they would see the different symptoms and complaints. I sure surprised them all when I came up with all these autoimmune diseases. But, I knew!!!! Hang in there and you will make it. Irish
hello to all.
I have had my feet xrayed a few times since my sjogrens, RA problem officially
diagnosed in 2010. I was surprised when he told me I had a bunion on my right foot.
One of my early joint pains was my feet....sometimes it felt like someone paddled the
soles of my feet all night and I suffered in the day.
I am a long time LPN..retired on disability last year. I wore Sketchers or CROCS
on my feet to baby them......inserts with regular shoes, etc..
SjoDry......yes...me too....the bed covers hurt my feet as well at night
I was also diagnosed with hypothyroid in 2010/2011....but no one ever told me
and I just never bothered to ask. I can't find my lab report from back then.
Welcome to the forum InspirD
shelly
Hello-
SjoDry: Thanks for sharing your experience. I can relate to the comment you made about feeling like someone had flipped a switch and suddenly all of these symptoms appeared. I have also developed bunions and they appeared pretty quickly as well. My doctor never mentioned he thought it could be RA related although I suspect it could be.
Irish: Thank you for your encouraging words. I agree that some doctors seem to have a problem with patient's that are RNs. I saw a doctor back when all of these symptoms began that shot down every question I had- and I believe it was because he felt I knew too much and had researched too much- he said something to that effect. I won't be seeing him again!
Eye2dry: You were diagnosed Hypothyroid and no one told you? What in the world?
Thanks everyone for your comments and encouragement!
hi INspirD.
What I meant to say in my post, is that I was diagnosed with hypothyroid
but was never told if it was Hashimoto. My TSH had been climbing steadily
for many years....when my rheumy tested me in 2011 it was by then I believe
7.45 (lost my lab reports). At my rheum. insistence my GP started me on levothyroid.
shelly
Hello INSpirD,
I can relate to your pain and frustration. I hope that you do not give up.
I am making this post to share some information about getting a diagnosis of Sjogren's that is rarely, or never, discussed in Forum posts - or else I have missed those posts which is probable - this knowledge is very well known, and I would guess that most people here know it - yet it is rarely mentioned for some reason.
THe idea here is to help you, or if not you then others, avoid wasting time - years even - chasing a Sjogren's diagnose that you are never going to get because of a pre-existing condition that makes one ineligible for a diagnosis of Sjogren's.
I mention this because you mentioned before that you are a cancer survivor. I don't know any details about your case, so this information may not apply to you.
I am using just the first credible list of "exclusion criteria for any diagnosis of Sjogren's" that popped up in a quick search that I did for you. Here it is, from the Sjogren's Foundation website (although Hopkins, Cleveland Clinic, etc all say the same things).
If I understand this correctly, then a person cannot be diagnosed with Sjogren's if any of the following conditions apply to you:
"Exclusion Criteria" from the Sjogren's Foundation Website:
Past head and neck radiation treatment
Hepatitis C infection
Acquired immunodeficiency syndrome (AIDS)
Pre-existing lymphoma
Sarcoidosis
Graft versus host disease
Current use of anticholinergic drugs (is Benedryl an anti-cholinergic drug?)
I hope this helps. If someone has one of these things and is seeking a diagnosis of Sjogren's, I am not sure, but it appears to me that they are wasting their valuable time, and then it is time to move on and look for a diagnosis of something else to explain their symptoms.
INspriD .....
Keep searching for answers and a diagnosis.
As we age, we tend to have several diseases. One disease does not rule out a second disease.
A good Rheumatologist (or other doctor) is not going to abandon you because of a previous diagnosis or because you may be taking certain medications. A good Rheumatologist will keep looking for answers and a diagnosis.
If your current Endocrinologist is not of much help, then I would suggest seeing a different Endocrinologist.
You may also want to see a Neurologist who is familiar with the neuropathies of Autoimmune Diseases. Some of your symptoms sound like they could be from small fiber neuropathy.
PS: I will add that I had Hepatitis C, which I have mentioned in several posts on this forum, and I was still diagnosed with Sjogren's Disease based on positive SS-A and positive lip biopsy as well as symptoms. Just because a person has certain medical conditions does not mean they cannot also have Sjogren's.
By all means, keep looking INspirD. Searching for answers is never a waste of time.
@SJSman: I'm living proof that those "Exclusion Criteria" lists have exceptions; I've been legitimately diagnosed with both Sarcoidosis and Sjogren's, by scalene node biopsy for the first, and very positive SS A, SS B and high foci lip biopsy for the latter. Before you say it, I know, and my Rheumy knows, that the lip biopsy was't necessary with the positive labs, but we did our own little research project to see if the granuloma formation from the sarcoidosis played any part, and low and behold, I had high foci of BOTH granulomas and clumps of leukocytes.
As a point of interest, I've mentioned my dual diagnosis everytime a discussion of Sarcoidosis has come up on this forum, talking about the "exclusion criteria" and my results.
Benedryl is not an anti-cholinergic. That list includes drugs like atropine, scopalomine, hyoscyamine, clidinium and belladonna. Drugs like these are usually uses when oral or gastric secretions are excessive and interfere with patient comfort or care (for example patients whit swallowing problems due to neurological disorders), or pre operatively to decrease secretions for safety during anaesthetic.
I would never discourage anyone from pursuing a diagnosis, because in most cases I'm unaware of their full medical history, and I'm fully aware that the current "guidelines" are fallible.
SJSman: I'm a little confused about your reply. I am not chasing a Sjogren's diagnosis. I'm wanting A diagnosis, and a lot of my symptoms are what people with Sjogren's experience. My rheumatologist believes I have it although I am sero-negative. I am a cancer survivor, but none of the "Exclusion Criteria" apply to me. Not sure how accurate or up to date that information is anyway since people can and do have Sjogren's and Sarcoid, and other things on that list.
Hello,
Your symptoms remind me of a very close friend in her late 30's. She had many random seemingly unrelated symptoms that continued on over 12months. These included severe lower back pain, extreme fatigue, memory loss, and burning headaches/scalp, not to mention many other things. Eventually her GP got a scan done and she has unfortunately been diagnosed with a brain tumour. I don't mean to concern you but it may be something you want to check. I hope you find some answers.
Hi Sjogrensmum,
Thanks for your reply. I did have an MRI of the brain when all of this began so a brain tumor has been ruled out. I never really had any symptoms specific to a brain tumor so that was never a concern. They did find white matter lesions on the mri, and after talking with many people on a Sjogren's site on Facebook, I've found a lot of them have the same.
I do agree that there are many conditions and diseases that can imitate Sjogrens and visa versa. I was misdiagnosed with RA in 2011 because of high inflammatory bloods, a weak positive rheumatoid factor and bilateral synovial joint pain. Turns out it was almost certainly the primary form of Sjogren's rather than RA. I too have Hashimoto's and I share many of your symptoms.
I was diagnosed last year by a highly positive lip biopsy result. I do now have a clear positive ANA, but while I was on Methotrexate and Plaquenil and steroids for RA, all were negative or equivocal. Many drugs and other things can interfere with autoantibodies.
So I would say hang in there regarding the autoimmunity whether it's Sjogrens or other. If you have one form of autoimmunity, as you do, then others can come along like buses. And bloods can be negative but swing positive just like that. If you don't want to risk the invasiveness of a lip biopsy and all of your bloods are negative then you might want to look for a different diagnosis. But I'm sure you're keeping an open mind to all the possibilities anyway. I too have white matter/ small vessel disease due to Sjogrens.
I would finish up by saying that a rheumatologist told me a year ago this month, that I definitely did not have Sjogrens or any other connective tissue disease. I asked him if being on a low dose of steroids might be masking things but he said no. I asked him what could be causing such high levels of inflammation/ protein in my blood. He replied that he didn't know but I should get multiple myeloma ruled out properly. I asked him what might have caused paired oligloclonal bands in my CSF and he shrugged and said "sorry but that's not my bag". He was wrong. My powerful instincts were proved indisputably right by that lip biopsy result. Trust your instincts is my advice.