Status
Not open for further replies.
G

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.
 
Re: Update:Neuro and Psychiatrist

Thank you all so much for your replies. I appreciate the time and effort you take to help people like me. I cannot tell you how much your advice, information and encouragement help me.

I'm sorry for the times I seem skeptical. I am not hopeless, just sometimes hard to fight the discouragement. I'm ashamed to say that as I know your cases are much worse than mine. I know many of you haven't seen my past posts (and that's fine, they aren't worth going back to read). But by way of explanation of some of my feelings, this has been going on for over a year. I've been to GP, had multiple gastro tests, an endocrinologist, 2 neuros (one awful, one at teaching hospital, a PT, a chiropractor, a nutritionist, a psych and psychotherapist. I am trying my best to heed their advice and when I go to the Rheumatologist I will do the same. So when I said I was concerned about what might happen at the Rheum that is the basis for that. I am concerned but not hopeless.

I actually think there may be answers there and am well aware the answers may not come quickly. I am interested in the info supplied in the post by "notme" about fibromyalgia, as that has been discussed as a possibility and one reason for the referral to the Rheum.

I will continue to go to the Psyc AND work on my mind set. I won't post on here again unless something drastically changes or I get a diagnosis from the Rheum or someone else. Don't interpret that to mean I am offended in any way. You have all been great. I just know you have better things to do with your time than "listen" to me in limbo land. When I get a diagnosis then maybe I can be of help to someone else.

Thanks again. You do a great service with this forum. I wish all of you the best---KITT
 
Status
Not open for further replies.
Back
Top
< >