Today is Vent Day

[jdever9]

This is not a whine or complaint It a stupid observation As a newbie, I understand that everyone is different and no one knows for sure what will develop next, BUT as I am losing arm use and worried what was next I have no idea what is next for sure. I didn't want to use Dr. google, and although your messages are very helpful (thank goodness for search) as you know its still scary. My leg calfs started cramping and wrinkling up. So what now, do I call Dr and tell of progression, do I call MDA for a neruo appt, do I call PCP. I have PT starting on the 15th, and hopefully there are leg exercises that will help, what is next. I hear friends talk about braces, ankle braces, etc. How will I know when to call and when not too. Or will I ever learn As everyone is different. how do I know I am ready for whatever my next step is. ALso is 3 ,months a guide for neuro, should I seee my PCP on a regular basis.

Whew Well I feel better, not sure it reallys help but at least I got it out(oh the Neuro's RN called me back and said its just a normal progression of the disease but if I want to him to see me, call MDA and get scheduled) Sounds like its just the normal progression of the disease and going to DR probably would be waste of his time and resources as well as mine)

So everyone thanks for listening I appreciate it and now I am off to my 11:30 appt with Psyhcologist for guideslines on dealing and not dealing, then it off to see Jimmy Buffet in Margarita Ville.

Nell

 

[notgivnup]

Nell, I totally understand your frustrations, concerns, and questions. I just think tomyself...."One day at a time". It has been the best for me. maybe it will help you. Ask doc the questions, if you develop drop foot then AFO's help you walk, If you can't walk, PWC helps. You doc can walk you thru it al. Don't worry...one day at a time. Can I join you and Jimmy ?

 

[Ms. Pie]

Yes, it's good to have a plan in place and equipment before you need it but at the same time it's not good to dwell on the future. A dilemma for us for sure. I do think you should wait for your PT appointment who can make some recommendations as to what you can do. Your Neurologist can only listen to you. They are mostly gate keepers and refer you to other health providers like PT or OT or Pulmonologist and the like. I've only seen my Neurologist twice in the past year just to touch base. As things progress I imagine she'll help me decide along with my PCP and Pulmonologist what treatments best suite me like a feeding tube and BiPap and the like. Thinking of you Sweet Nell!

 

[Ms. Pie]

My post went to moderation Nell. Thinking of you!

 

[caldona]

I have no pain but I take a B-12 shot once a week and B- complex shot twice a week and since I don't drive anymore the Home Health Nurse comes to my home twice a week. I don't know if this is why I don't have pain or not. But i figure it can't hurt.

 

[mich5]

Nell - as another newbie - it IS hard to tell what and when to call! My neurologist has told me to e-mail him any questions/concerns. That's helpful. He's been great about replying and directing me where to go. When something new starts, we need to be told where to go and to whom to turn for info/help. I started drinking a glass (about 10 ounces) of (diet) tonic water before bed and it has stopped the cramps in my calves (tonic water contains quinine, which alleviates the cramps). It was such a relief when those stopped waking me up.

 

[momap53]

Nell, your PT can make the call for AFO's. walker, pwc, transfer board, lift, etc. PT can answer a lot of your questions and even notify your Doc when you need a referral for the OT. Check out Rose's posts for photos of her AFO's.
Good luck!