Anyone else have a crazy list of symptoms and no diagnosis?

Posted by moonlighthouse @moonlighthouse, Aug 31, 2023

I’ve been having weird symptoms off and on for the last 5 years, starting when I was drinking way too much green tea. I think all the caffeine set something off, because weird things started happening. I started tripping on my own feet like they were just suddenly heavier. Then I started noticing muscle fatigue more, it was getting worse. I had chest pain, palpitations, and I felt like I couldn’t catch my breath. I was always too hot or too cold, either flushed or my teeth were chattering. My food was not getting digested, it started coming out looking like it did when it went in. I started noticing extreme body odor, and I usually almost never stink. It only took a couple of minutes to stink again after washing. I quit drinking caffeine but I still felt terrible. My coworkers were concerned and my employer paid for me to go to the doctor (I don’t have health insurance), but after telling him my symptoms, he just said “huh”. He said some of the symptoms sounded like thyroid, so he ordered the regular panel of blood tests plus a thyroid marker. I got a robocall saying that all of my tests came back within the normal range. But I felt like I was definitely dying, and like my doctor didn’t care. So I went to Dr. Google, because he’s free, and found the auto-immune reset diet. It was insanely hard but I started feeling better after only a week or two. After a month I started eating regular food again and I was almost completely better. Since then, I will be fine for months, then start having symptoms again and have to go on the diet. It’s terrible, but I’ve grown very fond of roasted vegetables. I was hoping someone on here had experienced something similar, because I can in no way afford to see a doctor, let alone several specialists who need to run every single test. The diet is working for me for now, but it would be really nice to know I’m not crazy.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@moonlighthouse. Seems like you’re having a very difficult time. Do you have a free clinic in your town? You’ve probably already seen doctors there, but did they suggest a referral to any specialists? A comprehensive medical center or university hospital are excellent places to start you journey. But so your homework first. Talk with groups that help the uninsured to find out where you can be seen. In my town there are 3 or 4 organizations that operate food banks and counseling centers. Find one in your area, they can advise you on what to do. You are sick and need professional and proper care.
Can you make some phone calls tomorrow and let me know what you learn? I really want to know

REPLY
@becsbuddy

@moonlighthouse. Seems like you’re having a very difficult time. Do you have a free clinic in your town? You’ve probably already seen doctors there, but did they suggest a referral to any specialists? A comprehensive medical center or university hospital are excellent places to start you journey. But so your homework first. Talk with groups that help the uninsured to find out where you can be seen. In my town there are 3 or 4 organizations that operate food banks and counseling centers. Find one in your area, they can advise you on what to do. You are sick and need professional and proper care.
Can you make some phone calls tomorrow and let me know what you learn? I really want to know

Jump to this post

I do okay most of the time, it is just getting annoying. I think there is a free clinic here and I’ve been wanting to register as a patient, but just never seem to get around to it. I am afraid they will put me on prescriptions forever, when if I just stayed on the diet or close to it, I probably wouldn’t have a problem. It’s just the worst though, you can’t have dairy, grains, legumes, nuts, seeds, nightshade vegetables, seasonings made from any of those things, tropical fruits, not to mention caffeine or alcohol but those two mess me up so bad I avoid them anyway. I did see a doctor, but he did not have anything helpful to suggest. I got no follow up call or anything from him.

REPLY

Did they do a thyroid ultrasound? Thyroid numbers can be normal but nodules can really mess with you. I suffered with many symptoms (some same as yours) I had nodules but normal numbers. Thyroid Meds made a world of difference. Also has your parathyroid (PTH) Been checked? 🙏

REPLY

No they didn’t do either of those, thank you for that!

REPLY
@difrnt1

Did they do a thyroid ultrasound? Thyroid numbers can be normal but nodules can really mess with you. I suffered with many symptoms (some same as yours) I had nodules but normal numbers. Thyroid Meds made a world of difference. Also has your parathyroid (PTH) Been checked? 🙏

Jump to this post

Hi just opened Mayo and read your input and needed your info asap. May I ask what symptoms you have? I have nodules and a high TSH , I’m getting a thyroid up take nuclear test next week ; but so curious your symptoms. I’ve myriad structural problems but also have not felt well in such a long time. I also had a nodule removed from my Parathyroid in 2014. My old PC was doing nothing so I left for a specialist and she recommended many labs and this test. Thanks for your time

REPLY
@suecutuli

Hi just opened Mayo and read your input and needed your info asap. May I ask what symptoms you have? I have nodules and a high TSH , I’m getting a thyroid up take nuclear test next week ; but so curious your symptoms. I’ve myriad structural problems but also have not felt well in such a long time. I also had a nodule removed from my Parathyroid in 2014. My old PC was doing nothing so I left for a specialist and she recommended many labs and this test. Thanks for your time

Jump to this post

I had a major surgery then C-vax back to back. Afterward I would feel like I had a temperature, like the flu coming on/bodyaches/ muscle and arthritis pain/ had a trigger finger/my neck hurt/couldn't swallow certain shaped pills(round/uncoated) felt like I was chocking when I bent over/extreme fatigue/rash/sweating/palpitations/unexplained weight gain
Went on Unithroid and it made me swell terrible. Now on NP Thyroid and doing really well. Now down 17 lbs. Been gardening/canning/painted my interior and more /palpitations gone/trigger point gone/overall aches & pains subsided. I d8d feel a little emotional when I first started the meds but that went away in about 10 days. Hope this helps.

REPLY

It may be worth referral to Rheumatology to test for Sjogren's Disease, formerly Sjogren's "Syndrome," if issues persist. PC Drs. will not usually think of that as a possible. It's one of the most common autoimmune diseases, is systemic and can affect any part of the body. Autonomic Nervous System Dysfunction, insufficiencies & other autoimmune disorders often co-occur with Sjogren's. After a decade of picking up multiple weird new symptoms & negative autoimmune antibody tests, lip biopsy confirmed it in my case. Sjogren's mimics many things, especially other autoimmune disorders. Sjogren's patients struggle with a multitude of cycling issues similar to yours for years before Drs. connect the dots & diagnosis. It's not only dry eye & dry mouth referred to as "sicca syndrome" as is still mistakenly thought of by some in the medical profession. Some people don't even have sicca, but many worse problems. Could be many things in your case. But that was my diagnosis & I noted the familiar experiences. Hope things improve for you soon. BTW, green tea causes me terrible headaches.

REPLY
@mdande1

It may be worth referral to Rheumatology to test for Sjogren's Disease, formerly Sjogren's "Syndrome," if issues persist. PC Drs. will not usually think of that as a possible. It's one of the most common autoimmune diseases, is systemic and can affect any part of the body. Autonomic Nervous System Dysfunction, insufficiencies & other autoimmune disorders often co-occur with Sjogren's. After a decade of picking up multiple weird new symptoms & negative autoimmune antibody tests, lip biopsy confirmed it in my case. Sjogren's mimics many things, especially other autoimmune disorders. Sjogren's patients struggle with a multitude of cycling issues similar to yours for years before Drs. connect the dots & diagnosis. It's not only dry eye & dry mouth referred to as "sicca syndrome" as is still mistakenly thought of by some in the medical profession. Some people don't even have sicca, but many worse problems. Could be many things in your case. But that was my diagnosis & I noted the familiar experiences. Hope things improve for you soon. BTW, green tea causes me terrible headaches.

Jump to this post

Thank you, that is very interesting! I have been thirsty for the last 15 years, I always have to have water with me or I’m miserable. 🤷‍♀️

REPLY
@moonlighthouse

I do okay most of the time, it is just getting annoying. I think there is a free clinic here and I’ve been wanting to register as a patient, but just never seem to get around to it. I am afraid they will put me on prescriptions forever, when if I just stayed on the diet or close to it, I probably wouldn’t have a problem. It’s just the worst though, you can’t have dairy, grains, legumes, nuts, seeds, nightshade vegetables, seasonings made from any of those things, tropical fruits, not to mention caffeine or alcohol but those two mess me up so bad I avoid them anyway. I did see a doctor, but he did not have anything helpful to suggest. I got no follow up call or anything from him.

Jump to this post

@moonlighthouse Your health is very important. Please try to go to a clinic as soon as you can. Because 1 doctor brushed you off doesn’t mean all of them will. And yes, they may put you on prescriptions forever, but isn’t your health important? It probably is or you wouldn't have been concerned enough to ask for help. Everyone here wants what’s best for you.

REPLY

Hey, I got you! LOL! I have so many problems with Drs, and problems left untreated, that my friends tell me I could write a book. 😉

REPLY
Please sign in or register to post a reply.