Toughest battles can be interpreted in many ways, all qualify.
What are the toughest battles you have fought or are fighting?
Toughest battles can be interpreted in many ways, all qualify.
What are the toughest battles you have fought or are fighting?
I am painfully losing the ability to use my limbs and doctors don’t know why. It really sucks.
You too? Details?
Sorry to hear you’re going through it too. Started getting sharp, wrenching nerve pain in my hips and shoulders 9 years ago (at a fairly young age). It slowly weakened my limbs over time, and causes terrible neck pain and stiffness. I can’t reach my head to shampoo it anymore, and I need a wheelchair for anything more than hobbling to the next room.
There are other problems too: liver, bladder, GI, which points toward something systemic like a mitochondrial or storage disorder. But those tests all comes back negative.
Done all the usual tests, and while a few of them show concrete problems, they are contradictory and don’t point to anything specific. My neuromuscular problems are so reminiscent of ALS my neurologist straight up told me he thought I had it. But it’s been 9 years with zero bulbar symptoms, plus my EMG shows no sign of MND and subtle signs of primary muscle disease. So it’s like, ???
Got a second opinion at a fancy big-city research hospital, and ultimately they were stumped as well. Now they want to send me to Mayo clinic, which I hope I can find some way to afford if they accept me as a patient. But something like ~30% of people in my situation get answers from Mayo, so it’s best not to get my hopes up.
So sorry to hear you are going through it. In the age of “AI” I have started feeding every detail, syptom and rest result into that and it has helped narrow my search and calm some of my worries.
I’m 39 soon and I have suddenly lost all energy in my muscles. Stiff neck and speech problems. Every small effort results in sore muscles like you wouldn’t believe. Im massively tired all the time, 9h sleep at night are not enough. I need about two naps per day just to keep working.
So far the doctors are not even taking me seriously. They think its all just in my head.
I think its something akin to chronic fatigue syndrome and something in my neck. Chatgpt was able to give me some exercises that help relieve some of the symptoms for now.
Darn, that’s rough. I agree AI has been massively helpful in the never-ending search for answers. It has been able to quickly find case studies of people with situations like mine. It’s good at finding patterns between things that people wouldn’t think of. Also very good at explaining test results and tests to try. But it’s important to check everything it says thoroughly, of course.
I know exactly what you mean about minor effort = sore muscles. I’m at the point where exerting too much force can cause pain that lasts for days, even weeks. I get fatigue but not as bad as yours. Extreme daytime drowsiness is a neurological symptom of many diseases, for example MS and myotonic dystrophy.
Doctors didn’t take me seriously either for the first 7 years until I nearly lost the ability to walk. And I’m glad I did, because doctors truly only believe what they can see. I’m sure you know that speech problems can indicate all sorts of serious problems. I’m surprised your doctors aren’t more concerned about that.