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Hi, i'm desperately seeking your help as my Doctors are not able to find proper solution (although they were dedicated!).
My main symptom, in short, ist ulnar pain. The pain itself is located around the Pinky Fingers (both sides) and the elbows up mostly pain free.
The pain started to slowly build up over time I have been partially in pain for about seven, eight years. As I were typing and programming on the computer a lot, I thought that's the cause of the pain. A few break days made the pain go away, usually. But it was spiraling up and was accompanied with dry eye pain. In summer 2015 the pain was so intense, I finally seeked medical help. A few months later, I was diagnosed with ulnar nerve entrapment at the elbows.
After a few months of preserving therapy and vitamin supplements, the ulnar entrapment could not be measured anymore, but the pain remained.
Now, few years later, I really have found nothing more than some kind of pain routine:
In warm conditions (threshold about > 22°C), my knees and elbows start to feel swollen. A few hours later, the nerve pain kicks in. If I’m staying longer in the warm conditions (like hot weather, in the sun), I experience pins and needles sensations all over the the body, but mostly in the neck/shoulders and around the knees. Some more time and I start trembling like I’m totally hypoglycaemic (which I am not).
So winter months and avoiding heat (like baths) improves the situation over time (but it worsens quickly in heat!). Yet the hands are very sensitive by now. Resting the hands on the table for a few minutes brings up (a different type) of pain. Clicking the mouse too often brings up index finger pain...
This winter, I avoided heat as much as possible and was always dressed as little as possible and the main mostly went away. Spring time, temperatures rises, and boom, worst two days of the year so far!
What have we found so far:
- Celiac disease by antibodies (moderately high, 1.5 years strictly gluten free)
- Thyroglobulin antibodies (now normalized)
- Weight loss after going gluten free (from 85 kg to 68 kg by now - I’m eating like hell however)
- Frequent muscle pain accompanied with heavy tiredness, mostly in the legs, since going gluten free
- Enlarged spleen
- White blood cells are frequently a bit too low
- MCV is frequently on the upper edge, sometimes a bit too high
- Vitamin D was way too low, increased now but can’t keep it high with supplements though
- Selenium was somewhat low
- Q10 was somewhat low
- ANAs are at about 1:160, with other rheumatoid tests being negative, rheumatoid factor (igA) sometimes quite high
- Diamine oxidase is way too low but I do not have histamine related symptoms
- Creatine kinase a little bit increased when muscle pain occurs
- Complementary medical doctor diagnosed heavy metal intoxication (chelation therapy done and extended)
- MRI: Brain, knees, hands mostly normal, somewhat increased fluid build up in the elbow
- Full body PET scan: slightly increased tracer uptake in the small intestine
- Colonoscopy: mostly normal with signs of gastritis
We made a ton of tests, I tried a lot of supplements and have spent thousands of euros on phyiscal therapy, chelation therapy, rheumatologists and private doctors.
Finally the pain has cost me my financial success, my girlfriend of 10 years, my friends, … Although I'm very optimistic, I'm on the edge to hell. I'm really afraid of the summer and I'm seeking your help now as some kind of last resort!
So go ask me anything, bring any idea to the table, I'll be glad for any improvement!
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