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Guest
Guest
To clear up a few things the psych said that seem to have you concerned:
"can take time to diagnose" -- let me explain briefly why. First, the EMG shows abnormalities. The "time" is to be sure that those abnormalities aren't something ELSE. (Remember, many things affect nerves and muscles)
Early in the disease--very early--if it's UMN only--the clinical exam is grossly abnormal--which leads the doctor to have patients come back to see if there is the magic word trfogey mentioned: PROGRESSION.
Honestly--from one that's lived it for over twenty years (10 diagnosed years) is that your pain and issues in the hip region could well be FIBROMYALGIA. Believe me, it does cause much more than simple 'discomfort'. I could write a book on it. Mine was so severe, God's Truth, it took MAYO CLINIC to determine that it was the ONLY problem because I had so many issues--swelling in my legs, pain in my hips, issues sleeping....the list is endless...and yes, it included severe muscle weakness for me. My symptoms were severe enough that my doctor was stumped--she could see that I was deteriorating--and none of her tests showed anything other than inflammation. (Sed-rate) Mayo found tumor in my liver--they removed it--but no reason for my list of other issues other than "The worst case of Fibromyalgia" their clinic had seen. (Their words, not mine) Mayo in Minnesota had a clinic specifically for fibro back then.
See the Rheumy. I'll disagree with Toto on that one.
You see--I do understand that sometimes we just 'know' something is wrong. Very often, to be blunt, we're just "right" despite it taking time to figure it out.
ALS isn't hard to diagnose--what is time consuming is ruling out all the other things that can cause the ABNORMAL TESTING. Your tests, I'm assuming, are normal. It's NOT ALS.
That doesn't mean at all that it can't be something else.
SI Joints can cause HORRIBLE pain in the back and hips (been there, got the T-Shirt)
As trfogey said: PROGRESSION.
You mention back pain. When we HURT--we walk differently. We don't always even notice it. Believe it or not--that can make your hip region look different.
Remember, too, ALS almost--not always but almost--always starts distally (hands and feet) which progress pretty quickly with disability. Can't button shirts. Can't open a jar or bottle. Can't snap your fingers. Trip on stairs because your leg won't lift your ankle UP.
Even those things above CAN be OTHER things. Read my signature. It's TRUE.
Continue with the therapy--but also with the Rheumy. Good luck to you.
"can take time to diagnose" -- let me explain briefly why. First, the EMG shows abnormalities. The "time" is to be sure that those abnormalities aren't something ELSE. (Remember, many things affect nerves and muscles)
Early in the disease--very early--if it's UMN only--the clinical exam is grossly abnormal--which leads the doctor to have patients come back to see if there is the magic word trfogey mentioned: PROGRESSION.
Honestly--from one that's lived it for over twenty years (10 diagnosed years) is that your pain and issues in the hip region could well be FIBROMYALGIA. Believe me, it does cause much more than simple 'discomfort'. I could write a book on it. Mine was so severe, God's Truth, it took MAYO CLINIC to determine that it was the ONLY problem because I had so many issues--swelling in my legs, pain in my hips, issues sleeping....the list is endless...and yes, it included severe muscle weakness for me. My symptoms were severe enough that my doctor was stumped--she could see that I was deteriorating--and none of her tests showed anything other than inflammation. (Sed-rate) Mayo found tumor in my liver--they removed it--but no reason for my list of other issues other than "The worst case of Fibromyalgia" their clinic had seen. (Their words, not mine) Mayo in Minnesota had a clinic specifically for fibro back then.
See the Rheumy. I'll disagree with Toto on that one.
You see--I do understand that sometimes we just 'know' something is wrong. Very often, to be blunt, we're just "right" despite it taking time to figure it out.
ALS isn't hard to diagnose--what is time consuming is ruling out all the other things that can cause the ABNORMAL TESTING. Your tests, I'm assuming, are normal. It's NOT ALS.
That doesn't mean at all that it can't be something else.
SI Joints can cause HORRIBLE pain in the back and hips (been there, got the T-Shirt)
As trfogey said: PROGRESSION.
You mention back pain. When we HURT--we walk differently. We don't always even notice it. Believe it or not--that can make your hip region look different.
Remember, too, ALS almost--not always but almost--always starts distally (hands and feet) which progress pretty quickly with disability. Can't button shirts. Can't open a jar or bottle. Can't snap your fingers. Trip on stairs because your leg won't lift your ankle UP.
Even those things above CAN be OTHER things. Read my signature. It's TRUE.
Continue with the therapy--but also with the Rheumy. Good luck to you.
