Diagnose me! Wth is going on?

[Anonymous]

Neighbor had these symptoms. Lyme and other coinfections. He had no rash at first but developed one later while he was trying to get diagnosed. And unfortunately the tests for lyme are not good. Took him many many blood tests until he got a positive test for lyme.
Hopkins and mit are both trying to come up with better tests.

[Anonymous]

Anonymous wrote:Do you have breast implants, OP?

I do not.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Could it be a leukemia or other blood cancer? They cause recurrent, unexplained fever. Frankly, I'd get myself into a doctor - any doctor - asap.

This was my thought. I think you need to get to an urgent care and have them run several panels of blood work to rule out various possibilities.

I did, they did draw several labs. I’ll have to wait about 5 days for the results, but at least the process has started.

To answer some people’s questions: I do see a hematologist for the anemia (it’s severe iron deficiency due to malabsorption. I also am allergic to it - who knew that was a thing? - so they give me IV anti-allergic meds before each infusion). I haven’t seen my hematologist recently (I see him twice a year), but my next one is coming up in two weeks.

Who diagnosed you with malabsorption? Did they run a celiac test? Or suggest you see a GI?

Hematologist, when they did an iron absorption test after my iron panel showed almost undetectable levels. Did not see GI.

[Anonymous]

OP back, my ANA test came back negative, after I spent all this time thinking it was for sure autoimmune. Back to the drawing board, I guess.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Could it be a leukemia or other blood cancer? They cause recurrent, unexplained fever. Frankly, I'd get myself into a doctor - any doctor - asap.

This was my thought. I think you need to get to an urgent care and have them run several panels of blood work to rule out various possibilities.

I did, they did draw several labs. I’ll have to wait about 5 days for the results, but at least the process has started.

To answer some people’s questions: I do see a hematologist for the anemia (it’s severe iron deficiency due to malabsorption. I also am allergic to it - who knew that was a thing? - so they give me IV anti-allergic meds before each infusion). I haven’t seen my hematologist recently (I see him twice a year), but my next one is coming up in two weeks.

Who diagnosed you with malabsorption? Did they run a celiac test? Or suggest you see a GI?

Hematologist, when they did an iron absorption test after my iron panel showed almost undetectable levels. Did not see GI.

Iron deficiency anemia was one of my main symptoms when I was diagnosed with celiac disease many years ago. My iron stores were completely depleted. I had been seeing a hematologist at the time who was helping me figure out what was going on. That doctor was the one who referred me to a GI to investigate a malabsorption problem. OP - You might want to look into finding out the cause of the malabsorption problem as another direction.

[Anonymous]

Op here: ^^^ wouldn’t celiac give me diarrhea? I don’t have any.

[Anonymous]

It is almost always Lyme in this region. Plus it sounds exactly like untreated Lyme.

[Anonymous]

Hi OP. I have suffered from a similar range of symptoms since last June. After some word-finding episodes, dizziness, tingling and brain fog I went to the ER a few times, they did MRIs and confirmed no stroke and diagnosed me with migraines. This was strange to me since I have no history of migraines and had no headaches, but apparently there is a thing called vestibular migraine which can cause those symptoms with no headache. When I questioned why these would suddenly arise it was attributed to stress and perimenopause (I'm 38).

That still did not seem right to me, and then I started developing frequent canker sores inside my mouth, which I hadn't had since I was a kid. I'll spare you all the additional details, but I eventually discovered mast cell activation syndrome (MCAS), which can cause all of these symptoms and many others. I went to an allergist with my suspicions and sure enough, my tryptase levels were elevated and he diagnosed me with MCAS.

So my recommendation is to go to any doctors you can find and ask if they can test you for that. I suffered for many months and saw many doctors, and no one could help me. It was very frustrating and I thought I was going crazy, but I wasn't. Besides finally having a diagnosis that makes sense, the other good thing is that the first level of treatment is an increase in the Zyrtec I had already been taking. I also made some dietary changes, which helped a lot.

I am someone who usually brushes off any sickness and only goes to a doctor when absolutely necessary, so feeling like a hypochondriac as I went from doctor to doctor was difficult. I hope you figure out what's wrong. Good luck.

[Anonymous]

Anonymous wrote:Op here: ^^^ wouldn’t celiac give me diarrhea? I don’t have any.

No, that is not one of the main symptoms. I have Celiac and very rarely had diarrhea before being diagnosed. Mostly stomach pain and cramps, brain fog, just not feeling great. I also have low iron levels, but for me that has more to do with really heavy periods. Once on the pill, my iron levels recovered.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Op here: ^^^ wouldn’t celiac give me diarrhea? I don’t have any.

No, that is not one of the main symptoms. I have Celiac and very rarely had diarrhea before being diagnosed. Mostly stomach pain and cramps, brain fog, just not feeling great. I also have low iron levels, but for me that has more to do with really heavy periods. Once on the pill, my iron levels recovered.

Great to know! How do they diagnose celiac? It’s definitely worth looking into it! —Op

[Anonymous]

8:28 PP here. Somehow in my saga above I forgot to mention that I also had ringing in my ears (tinnitus). I also tested negative for Lyme but the other posters are right that you should ask for that test as well.

[Anonymous]

Anonymous wrote:8:28 PP here. Somehow in my saga above I forgot to mention that I also had ringing in my ears (tinnitus). I also tested negative for Lyme but the other posters are right that you should ask for that test as well.

I didn’t even know that MCAS was a thing (and I’m a nurse)! I also have been diagnosed with migraines, but some things don’t add up (like the mouth sores or low grade temps). I will also see if I can get tested for this. Thank you for your help and I’m glad you’re feeling better!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Could it be a leukemia or other blood cancer? They cause recurrent, unexplained fever. Frankly, I'd get myself into a doctor - any doctor - asap.

This was my thought. I think you need to get to an urgent care and have them run several panels of blood work to rule out various possibilities.

I did, they did draw several labs. I’ll have to wait about 5 days for the results, but at least the process has started.

To answer some people’s questions: I do see a hematologist for the anemia (it’s severe iron deficiency due to malabsorption. I also am allergic to it - who knew that was a thing? - so they give me IV anti-allergic meds before each infusion). I haven’t seen my hematologist recently (I see him twice a year), but my next one is coming up in two weeks.

Ask about secondary hemochromatosis due to infusions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here: ^^^ wouldn’t celiac give me diarrhea? I don’t have any.

No, that is not one of the main symptoms. I have Celiac and very rarely had diarrhea before being diagnosed. Mostly stomach pain and cramps, brain fog, just not feeling great. I also have low iron levels, but for me that has more to do with really heavy periods. Once on the pill, my iron levels recovered.

Great to know! How do they diagnose celiac? It’s definitely worth looking into it! —Op

First step would be a blood test, but gold standard is an endoscopy. Don't stop eating gluten, though, otherwise it can't be diagnosed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here: ^^^ wouldn’t celiac give me diarrhea? I don’t have any.

No, that is not one of the main symptoms. I have Celiac and very rarely had diarrhea before being diagnosed. Mostly stomach pain and cramps, brain fog, just not feeling great. I also have low iron levels, but for me that has more to do with really heavy periods. Once on the pill, my iron levels recovered.

Great to know! How do they diagnose celiac? It’s definitely worth looking into it! —Op

https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/:
Symptoms of Celiac Disease

Celiac disease can be difficult to diagnose because it affects people differently. There are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body. Some people develop celiac disease as a child, others as an adult. The reason for this is still unknown.

Some people with celiac disease have no symptoms at all, but still test positive on the celiac disease blood test. A few others may have a negative blood test, but have a positive intestinal biopsy. However, all people with celiac disease are at risk for long-term complications, whether or not they display any symptoms.