No DX Yet...

[CindyM]

Hi Midwest Girl- I think what I am in denial about right now is the little voice in my head that says maybe I should have some of the other Docs look at my test results. But I figure if my symptoms get worse then we'll deal with it. Meanwhile, I choose to believe they won't get any worse. Sadsack says he has about 5 or 6 people in his caseload who get all the symptoms of ALS but the symptoms never get bad enough to show up on tests. He said I should also prepare myself for getting worse but he hopes if that happens it won't be for awhile yet.

I can live with the fact that medicine is not an exact science. And after visiting this board for so many months I can live with the fact that ALS does not behave in an exact fashion. So its back to prepare for the wrost and hope for the best.

 

[CindyM]

JackieMax- I sympathize with your hubby. There's a real longing that comes from thing we love and can no longer do.

How about all of the rest of you nice folks: any tips for Jackie's hubby? Certainly he deserves to enjoy the hobby that brings him the most pleasure!

 

[ltr]

Jackie, can you bring some bonsaii's and flowers to him? I know it's not the same as getting right out there in it, but maybe he can find enjoyment dealing with some plants inside. Happy Spring! Leslie

 

[MtPockets]

My answer to a similiar thread:

Just a thought for all of you without a diagnosis yet. It might be a good time to get some life insurance if you do not have any, because after you have a DX of ALS you will not be able to get life insurance anywhere.

If it turns out you do not have ALS you can always cancel the policy. Just a thought about pre planning for the future of your families. I wish you all the best with your tests and docs. Prepare for the worse and pray for the best.

God Bless
Capt AL

 

[zac111]

well i got my mri of the brain and cervical spine back and they were normal i asked the nurse what they thopught and she pulled my case file and told me more than the doc did his notes say pure motor neroupathy she talked to him while i was on the phone and he told her that i just didnt fit the age group for als im 34 guess he hasnt read some stories that i have.on the up side i have an appointment with another nero for a second oppinion i called and tried to get an earlier appointment and of course they said they were booked up but then thye netro called me himself and asked me what was going on and i told him he worked me in 2 weeks from now he specialises something to do with the motor nerves so i might find something out soon so far just have slow motor nerves with decreased reflex in arms.

 

[ltr]

Hi zac, that's also what I am being treated for, neuropathy. I start meds tonight and see if it helps any. Did the doc give you anything?

 

[zac111]

no not yet hes sending me to another nero i go on the 13th hes some kind of specialist in the field of the motor nerves but my other cant rule out als he says he doesnt think i fit the age group but i know it can strike anyone i hope it is neurophaty time will tell now i know i hurt alot guess thats the motor nerves that are slow causing that.i hope they try something soon to treat this to see if anything helps.by the way what kind of neruophaty are they treating you for?

 

[ltr]

I have no idea what kind of neuropathy it is. I am going to find out, but they gave me Neurontin. I am taking it tonight because I hurt quite a lot too. I will let you know how it works.

 

[zac111]

thankx ltr and good luck i hope it works for you.