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Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,857
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Hi, all!
I've got a question about this as yet, undiagnosed debilitating thing I've got. What do you do when you notice your weakness is spreading into new muscle regions and fear you could soon be unable to work/function in your current occupation with your next visit to the neuro 3 months away?

Do you call the doc and say, "Hey, I'm really starting to fall apart here; any chance of working me in any earlier?" Or, do you just persevere and hope you are still able to funciton at some reasonable level until the next appointment comes, let the doc see the damage and make his own assessment?

When do you make the decission you just can't continue to work because it's just too dangerous for all of those concerned?

Zaphoon
 
Hi there. If you're undiagnosed it wouldn't hurt to get in earlier if you've noticed a marked decline. If it's not ALS timely start of treatments can make a difference. Depending on what you work at you may want to take some sick time or short term disability if you think you aren't functioning up to what you feel is right. Ask yourself if you'd want to work with a person in your shape.

AL.
 
Al,

Thanks! I am self-employed and so far, I am still able to perform at about 90%. If my lower arm muscles continue to decline, it won't be long before I'll have to quit. I'll start dropping heavy tuning levers on people's pianos and they won't like it. I am asking myself that question you suggested, "Would I want someone in like condition on the job in my house?"

Very helpful. I may wind up moving the appointment forward unless there is a slow-down.

Zaphoon
 
Hello....If you have a good relationship with your doctor, perhaps you could speak to him/her about prednisone. In certain situations this can help with muscle strength, but it does not help with any type of atrophy.
 
HI there
My husband has had to go sick from work as he just cant cope with it due to tioredness, aching in legs and balance problems. he is still undiagnosed but we got the doctor to rush things a bit as he was declining so we much nearer to a diagnosis, the neuro is jusy waiitng for him to have mri now so he can confirm its definetley nothing else! Wish it was!:(
 
I am in the same position - just hanging in there trying to get by day by day at work - I have an appointment date and it is not too far away so I have an end point to reach before I make any decisions. It is a difficult time and you have my empathy. I went to my GP and I think that speeded things up a bit as I was getting anxious about the wait
 
Thank you lovelilly, limana68 and bluebottle for your input. I appreciate the tip on prednisone (I'm not ready/willing to stop working yet and if it helps - great!). I also appreciate the empathy.

The frustrating thing about all of this is thinking this may be something treatable that is going on untreated because lack of a diagnosis. It gets tougher and tougher to let this thing take its course without any action being taken to combat it. How can you fight an unknown enemy? What is it? How is it doing its damage and what can be done to stop it? All unanswered questions...:confused: As a former surface warfare guy, this is hard to take laying down.

Thanks again for the input!

Zaphoon
 
Zaphoon, if you're able to try prednisone, it might also help you with a diagnosis, as it is a powerful anti-inflammatory. If you search for the thread Lydia posted about Ibuprofen, I wrote about my experience with prednisone. I'm sorry that you're continuing to have increased problems, please try to see if you can get in to the doc sooner (and look for my post about the pred. on the other thread)
take care, :)
 
Rose,

Thank you for your input. I'll research your thread as advised.:)

Zaphoon
 
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