TheBudWizrFerret
Your Replies
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December 31, 2015 at 3:54 pm
Bill:
I looked up the ingredients of the Glucerna and it has milk products in it. Like you, I almost bought the farm when cancer ravaged my esophogus and stomach. I lost both and was on a tube feed for a year. w/7 months of that on life support. The doctors took part of my colon and re-fashioned a fake esophagus so I can now eat, but I develeoped a milk allergy with all this.
Getting enough calories is hard. I weigh 102 (my highest weight when I was riding was 116). 5 miles? Ha ha…got you beat. I used to run 14 miles eeeevery weekend. Plus riding 7 big horses every night after work.
All the people in my family have lived past 100, so I figure I’ve got 30 years to work on this. Might as well have a project; I retired years ago and have not much to do w/my time.
Lee
December 30, 2015 at 12:46 pmHi Bill:
When I was at Strong (the best teaching hospital in the state) who is managing my care, they said “Eat anything you want.” Then there is Craig No-egg on youtube who is screaming that going vegan is the only way to go.
That was my local neurologist that made that comment. I have another IVIG treatment scheduled and then go back to Strong for another evaluation. Then we’ll see
I have a reduced limit on food, since I had a full esophectomy/gastronomy and that limits a lot of what I can eat.
Sorry if my questions have irritated you. I’m just so alone here…..it’s nice to have someone to talk with.
BTW….I have had several Nutritional consultants. The had me on Ensure, which is most sugar which I can’t eat.
Lee
December 29, 2015 at 1:28 pmWhat kind of stuff do you eat? What would be a good diet? I’d be willing to eat cat shit if it would help.
Lee
December 28, 2015 at 11:24 amBill:
Now I’m confused. Are you saying IVIG may be helping me even though I don’t feel any better?
Lee
December 24, 2015 at 2:38 pmHow does the IVIG help you? I don’t feel like mine is doing anything. If IVIG doesn’t work, are there other things they can try>
Lee
December 21, 2015 at 1:12 pmAre you able to walk? I’m in a wheelchair and that is getting old. Plus I’m just getting over the flu and I’ve lost all the little gains that I had made. Just came from the doctor and shee said it will take me several weeks to get my strength back.
Do you live alone? I do, and that makes it hard. I have to pay for in-home help and I am out of money.
Funny, I am 73, too.
Lee
December 20, 2015 at 12:09 pmHey Bill:
I was wondering how you were doing. My CIDP is on the rise also. Plus, I think I’ve got the flu. I’ll add you to my prayer beads. Let me know how you are doing.
Lee
December 5, 2015 at 1:47 pmHey Bill! Thanks for tthe speedy reply. (A large part of my problem is I’m all alone, stuck in a tiny apt. I’m so lonesome I could frikkiN’ SCREAM!) I’m in the boondocks of western NY and when I got DX’d my primary DR said “what is that? I’ve never heard of it.” and then proceeded to give my the you have no hope lecture.
What is EC and WC? I’m wortking as hard as I can all by myself and do a little yoga (I used to teach yoga and train horses….HAH!) And your advice to think about other stuff is spot on. This is such an ‘in your face’ disease but you make it worse by concentrating on it. I have a smart tv in my bedroom and I watch a lot of positive stuff and then go to sleep w/Willie Nelson.
Does your pain get worse at night?
My neurologist said set small goals, but like what? What types of goals are you working on?
Lee
December 5, 2015 at 11:40 amBILLwhit1……more questions. I just did a search on exercise bikes. Any pointers on how to pick one out for a tiny apartment? I have a spare bedroom I could turn into an exercise room but nervous about ordering anything and then finding oyut it won’t work for me.
Lee
December 5, 2015 at 11:07 amBILLwhit….sorry. No, that’s not me that’s been in a wheelchair for 8 years….that’s Jim-LA. His profile says he is making progress so I guess all is not lost.
Are you recommending an exercise bike? I had access to one when I was in the hospital, but now I am homr I can’t do much of anything.
??Why are you pissed ff? Anything you’d care to share?
Lee
December 4, 2015 at 11:34 amThanks Bullwhit. Have you been able to make any progress? I just feel so stuck I feel like giving up.
Lee
October 30, 2015 at 11:13 amThanks, Jim, I hope you can improve too. This disease IS rather dramatic, isn’t it? I have a theory what happened to me, but nobody believes it.
Can you walk on a walker at all? What is your current PT? When I got released from hospital, I got 3 visits from PT and then my ins said, “OK,you’re done!” So much for health care in the US, huh?
Lee
October 29, 2015 at 12:50 pmE,
Tell her not to lose hope. You never know in this world. Years ago I was worried about MAYBE having a serious disease, and I went out in the parking lot and got hit by a Strohman’s bread truck. (Not hurt, just knocked down.) I decided to never worry about tomorrow.
When I first got CIDP, I started IVIG and was getting better (just a little, but every bit it helps) …..my legs felt stronger and the shaking got better and I wrote a little bit, and then I got the flu. I was in bed for 9 days and all my progress disappeared. I was so depressed. But my neurologist was supportive, and I’m working on getting it back. Somedays I can walk up and down unsupported by my bed, some days I go down like a rock.
Tell your mother I will put her on my prayer beads for her shacking to improve. One thing I’ve found is to not concentrate on the shaking, but focus on the INTENTION of what you are doing……i..e. think “reach for faucet….turn on water….etc.” That helps get the movement done.
Let us know how she is doing.
Lee
October 29, 2015 at 11:39 amJim,
WOW thanks a lot. Very good article.
I was given high doses of prednisone for 5 months when I was in the hospital, and I went seriously downhill fast. Since then I have found articles on nih.gov that say steroids cause sensory CIDP to deteriorate. I’m now only on IVIG.
What’s the difference between Myelin and Axons? This stuff us all greek to me.
I am being followed by the best teaching hospital in the state, so I feel I’m in good hands. At my last check-up they said I had improvement in strength, but no change in sensory. At my next check (every 3 month) I am scheduled to have a skin biopsy done. What is this for, do you know?
So, is there any hope for repairing for some of the damage? My God, I I was riding motorcycles and 7 huge horses a day, and now I’m in a wheelchair. I can’t believe this!
How are you doing? Do you have your story on the forum someplace?
Lee
October 28, 2015 at 11:38 amYour mother is not alone in this. I have severe tremor also, and since I live alone it is nearly impossible to take care of myselff. My neurologist says tremor or shaling is not part if CIDP, but I don’t agree.
Are there only two of us with tremor?
