Still No Answers..Is it Just Me?

@dp5wheels25
I wish you the best in finding the right specialists locally to investigate further you low IgM and high free light chain test results to look for cause and offer treatment options.

I will wonder if you have a plasma cell disorder or an immunodeficiency that hasn’t been diagnosed. You may also want to investigate myeloma. A hematologist and immunologist may be able to help with a comprehensive review of your tests/results and recommend next steps.

Hello. I have the symptons. My spine dr diagnosed me as ankylosing spondylitis. I have had crackling popping grinding joints for years. Worst are shoulders, sternum, neck, arms. If I ever lay on my stomach, I cannot move, I am frozen. I blame some of this on my cervical spine, discs all deterioated, but also on my celiac disease. Going to th Gym, and physical therapy helps, but does not eliminate. I find that HRT extrogen patches help as does the migraine medication sumitriptan.

I second this idea. PMR was the first thing I thought of. One weekend I could throw my western saddle on the back of my horse, no problem, then the next weekend I couldn't. Because it hurt! 4 yrs I was with a rheummy who couldn't diagnose me. Then I got a second opinion from a rheummy who did. Just a thought.

Thanks suetex, much appreciated...

Don't doubt yourself. You are not making this up.

Thank you so much for the hugs! It’s such a blessing to be able to talk about health issues, to people who really understand. I’ve heard and read that some of the issues we go through or illnesses we have, are called “invisible diseases”. Because it’s hard for others to understand things about us that they can’t see.
I can understand that to a degree. However, I struggled with my family not understanding, almost to the point of not believing just how sick I’ve been. My two sisters live in different states. So they never really saw the things I was going through. But at the same time, they never asked me questions about what was going on, what the doctors were saying, what kind of tests were being done and the results. So I just kept it to myself. My daughters were teenagers when everything started after chemo, so I felt they were too young to go into too much detail. I may be wrong, but I think most mothers don’t want to burden their children with unpleasant things like illness.
They are older now and understand things much better. My two daughters and I live nearby each other so they see the things that go on. They started helping me. Taking me to appointments and listening to what the doctors are saying. Now that’s a true blessing.
Thanks again for listening! I can be quite a talker! Chatty Kathy!!!

Wow I’m so sorry yes it’s still frustrating when no one has an answer and don’t seem to care, I’m sure they do but sometimes it feels like they don’t.

I sort of feel like I'm in the same boat. I'm in the process of testing - looking into rhuematoid arthritis and it's most likely? EDS but I can't get in to see the MDs for months and months to actually run the tests and do the evaluations so for now I'm just in PT. Some days are okay but others are awful and sometimes I wake up from it in the middle of the night feeling like one of my joints is exploding like a dying star. No one in my family seems to have much sympathy - including some of my internists and I'm getting frustrated. I'm not generally whiny about pain so I think this is probably pretty bad. I also seem to have a chronic headache which may be related or may just be stress but I'm pretty upset about my family's (non) reaction. It's more complicated than just the health stuff but it sure sucks so I can empathize with your situation. Good luck with your diagnosis! I feel for you.

Thanks for your response. Hang in there, I know the pain is not fun and the lack of answers, waiting on doctors, etc... can truly be frustrating. If there is good news, it is that I am seeing from this forum that my situation is not unique and there are lots of others who are suffering and have no answers. Guess that gives me some solace in some strange way. Best to you and hopefully you can get some answers soon!!

Agreed. Always nice not to feel alone and to receive support. The folks in my life seem to nullify both my physical pain and the mental toll that takes on me as well.