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26 male, progressing sickness for 2 years, how to get help?
My story,
In 2023, at 24 years old, I considered myself a healthy, active and well rounded person. I enjoyed many hobbies including lifting weights, running with my dogs, playing guitar and camping. I was diagnosed with Type 1 diabetes at 23 years old and had extreme ketoacidosis. I adjusted well to the diagnosis and have been able to maintain my A1C between 5.9 and 6.3.
In June if 2024 I started noticing intense muscle cramps when moving in my extreme ranges of motion, primarily in my calves and pectoral muscles. In July of that year, I noticed some small hard nodules forming between my fat and muscle tissue in my pectoral and bicep muscles. I quickly booked a visit with my family doctor who determined my symptoms were not of concern and that I should “wait it out”. In August of 2024 my calves started to tingle, my body would twitch all over, I had bouts of constipation lasting 5-14 days, I was experiencing fatigue and myalgia. I visited the ER and had an xray and CT scan (with contrast) of my chest and abdomen, no abnormal findings. My family doctor ordered many labs including fecal testing, metabolic panel, iron, B12, vitamin D, immunoglobulin, aldolase and complete blood count, with no abnormal findings, besides my creatine kinase being slightly elevated. In October and November of 2024 my symptoms progressed, more small nodules down my forearms (not visible but palpable), bouts of shortness of breath, alternating constipation and loose stool, and now progressing weakness of proximal muscles. With these symptoms I saw multiple specialist including my endocrinologist, neurologist, oncologist, and a rheumatologist. I followed up with more labs (most same as before) with new test for thyroid functions, EMG’s, MRI’s, myositis panel and even a biopsy of the biggest nodule on my chest (~1-2cm). The only abnormal findings were serum creatine kinase levels above 5,000 and the tissue sample was identified to be necrotizing fat tissue (no cancer, yay). Still through March of 2025 my symptoms progressed to include trouble swallowing, neck muscles tingling and weak (to the point of not being to hold my head up after the work day), and sometimes was unable to hold urine in my bladder. The muscle weakness seemed to come and go in different muscle groups sometimes my legs, neck, forearms or shoulders for 1 week to a month at a time. The only thing that is constant are the nodules and muscle pain (aching and cramps).
Now, Sept of 2025, I have had more of the same blood test (including another myositis panel and complete blood cell count) with varying creatine kinase levels (slightly above normal ~200) and nothing else abnormal. All of my symptoms previously mentioned are unchanged with a few fun additions. I have started developing itchy bumps around my ankles, shins, forearms and chest. I am also intolerant to exercise including walking and light stretching. If I do movements that strain my core, I have trouble using the bathroom for a few days to a week (as I am unable to “push”). As well as hand and finger weakness/cramping (no more guitar playing).
Here I am now, hands cramping from typing, restless, exhausted and unable to do or enjoy any activities I once enjoyed, asking for help. I am at my wits end, can’t find any patterns in my labs or helpful research articles. I fear I am slowly dying. I am no fun to be around and can barely function at my desk job. I see another rheumatologist soon. I will be requesting a referral to a GI specialist. I feel like giving up. What else can I do? What should I do? How do I keep going…
Side note, I have been brushed off by seemingly arrogant and heartless doctors with comments like “Nothing is wrong with you”, “we won’t know what is wrong unless you wind up in the ICU”, “you are a diagnostic dilemma, no doctors want to work with that” and “you just need to lower your inflammatory markers by not eating meat” (mind you most of my labs indicate normal levels of inflammatory markers, with my C-reactive protein lower than normal). I share the pain of many who are in my situation and hope everyone gets the help they need with the compassion they deserve.
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It took a year for the doctors to finally conclude that my wife had ALS! She lasted 2.5 years from final diagnosis. She had different scans, fluid tests, etc before they decided. They have a list of over ten diseases and each one has a test that they can measure but ALS is the default since it doesn't respond to the tests. ALS is neuro-muscluar disease. That is, it attacks the voluntary muscle nerves in the body.
On the specifics of your case I have no background. On your negative experience with multiple doctors over many years, I have similar stories (and from well before COVID). If you don't fit in their top 10 diagnoses, it's good luck. You also had LADA turn into type 1, which is perhaps the most mysterious form of diabetes. I salute anyone who can deal successfully with type 1.
To make a long story short, let's talk about diet. What kind of diet do you practice, with the complications of type 1 always at hand? While you're waiting for your doctors to come to some useful diagnosis or prescription, investigate diet and supplements. Doesn't have to be anything radical, but look for small suggestions and super-safe things to try. This is what I've done on a couple of medical issues over the years, and lo and behold, I found significant relief there. Anyway it passes the time, right? You can also consult a nutritionist, or better yet an MD who is also a nutritionist or has training or even interest in the field - as very few do. On diabetes I have found dietary guidelines and specific foods that really help - also how much I can safely cheat, LOL. And then I found my endocrinologist already knew about many of them - but never mentioned them? Don't even get me started ...
Your one doctor's comment about inflammation levels is of general interest, though if it's not confirmed by panels that is - disappointing. It may still be worth pursuing, there are untold details of the human metabolism that are not yet part of standard American medical practice. Some of this is actually promising territory for some new AI-assisted "precision medicine" companies, trying to correlate masses of information to see what everyone's been missing.
Check your omega levels, are you getting omega-3s, probably not unless you are explicitly targeting them, most Americans get far too much omega-6. Just get some fish oil capsules and add one to your diet, almost certainly worth a try. Also try turmeric/curcumin. And maybe a few other things. Eat your colored fruits and vegetables, try any kind of tea with some hibiscus leaves in it. If any of these things help you should notice it starting within days, even hours, though likely a full clearing would take months at this point even in the best of circumstances.
Hope any of this helps.
I would be very concerned about your CK > 5000. I’m not sure what kind of specialist you would need but it’s sounds like spontaneous rhabdomyolis, which can have a myriad of causes. It gives you a place to start
I am so sorry for all you are going through! I had similar symptoms of severe muscle stiffness for a couple of years that kept me mostly in a wheelchair (I also had bouts of paralysis among other strange symptoms). I had seen numerous specialists, three neurologists, rheumatologists etc... most all lab work was fine. I was finally tested for Celiac Disease even though I had no GI issues. My symptoms of severe muscle stiffness, however, did not improve after going gluten free (which is the only treatment for Celiac Disease). It was not until I (miraculously) discovered I had an issue with "glutamate" which is an amino acid found in all food but most prominently found in high levels in protein foods like meat, fish, and beans, slow cooked foods, anything processed, Parmesan cheese, tomato sauces, broths, dairy, wheat products, etc. After experimenting with eating a half a block of Parmesan (which has extremely high levels of glutamate) my legs seized so badly that I could hardly move them at all. After making this discovery I eliminated the bone broth, dairy and other higher glutamate foods I had been eating and within two weeks I was running! I now keep a very careful diet that looks mostly like a Mediterranean diet with small servings of protein, lots of fresh veggies, olive oil etc. and I am symptom free and grateful to be living my life again (my husband and two young children are so grateful!). I feel better than I have in years and years. If you are curious and would like further details on my experience with glutamate excitotoxicity look under my profile and my story of "Celiac and Myopathy?" where I begin with a statement of my symptoms and later respond with my discovery of glutamate being an issue.
This leads me to the question... Have you been tested for Celiac Disease or gluten sensitivity? About half of people who have Celiac do not know they have it and are symptom free, but Celiac is a multi-system disease that primarily attacks the small intestine and can cause over 200 symptoms ranging from skin and hair issues to paralysis, cardiac issues, fertility issues, etc. It is often not tested for if GI symptoms are not a big complaint. It also tends to run in families and in people who have an other autoimmune conditions, particular thyroid diseases and diabetes. A GI doctor should test you with all available tests and run an endoscopy to check for blunting of the villi of the small intestine. Do not go gluten free before testing! You must be tested while still consuming gluten or your lab work will "normalize" giving you a false negative.
I am so sorry for all you are going through. It is so hard not to have answers but do not give up. Keep pushing for them! I hope you find answers quickly and start feeling better soon!
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1 ReactionI am so sorry to hear you are having no luck in determining your particular issue. I have had a similar experience. I have been HIV+ for 34 years. Over the last 12 years, my CD4 count has continued to drop from over 700 to 34 as of a couple of months ago. Now, if my viral load (amount of virus in my system) were not undetectable, this would not be a surprise. However, I am undetectable. I was after my doctors to try and figure out what is happening. All I got at that point was "well, let's just watch and see". I was not happy with that. My current physician (thank God!) met up with a doctor from the NIH (National Institute of Health) at a conference and explained my situation. Now keep in mind that during the last 10 years, I have had the flu/COVID twice/Respiratory issues, and should have been in the hospital, but got better. I also tested positive for HPV-16. That should also have made me sick at some point.
I should say, prior to all of this, I have been put through the paces. None of the doctors, once they started paying attention can/could find any reason for this to happen. Nothing with meds, did genetic testing, pet scan, bone marrow biopsy just to name a few things provided any information as to why this is happening. I am now part of a research study at the NIH.
My point is, do not give up. There is a doctor out there that will help. It's just a matter of finding them. I know your frustration. For me, the waiting, although annoying, has been worth it. I now have some of the best minds working on this. Good luck!!
I just want to say how sorry I am that you’re suffering like this at such a young age. I’m wondering, I read that you see an Endocrinologist, so could your thyroid be the problem? Are you treating your thyroid with medication? You could also have Hashimoto’s, which I have and when I saw you have itchiness, I thought hives, which I’ve had. I am wondering if it’s the food you’re eating that is causing some of this? Do you eat gluten, dairy and soy products? I have Long Covid and have and had some of your symptoms and I have eliminated eating gluten, dairy and soy and body inflammation and hives are gone. It could be as simple as eliminating certain foods. I would suggest to you to have a Food Sensitivity Test done, so you can then see what your triggers are, if it’s from food. I wish you well on your health journey! Keep fighting, don’t give up.