what a sweet post– thank you.
funny thing, i don’t feel like a big ‘ol trailblazer– 🙁
so many others with cidp and other autoimmune diseases have been doing this around the world, and even right here in the US. true, northwestern’s trial for cidp makes it kind of a first in the US– but if we assume that most autoimmune diseases share commonality in terms of how they function (e.g. immune system wrongly attacks some part of the body), then i think we can look at this procedure as relatively commonplace these days. it frustrates me how overly cautious our health system works in terms of approving treatments– the idea that this illness is “treatable,” urks me beyond words… the drugs available to us are miserable… and for many of us, terribly inadequate. in my case, ivig made me worse, cyclosporine made me feel on death’s door, and prednisone helps… but wow, at a big cost…
i’d like to gather these neuros, with their egos and plaid wool blazers– like mice in a laboratory, and allow them to live with what we live with for 6 months… then i’d like to ask them if they will nonchalantly tell their cidp patients, “it’s treatable.” it’s a big poop sandwich, as we all know well.
my opinion– it’s not treatable. i don’t accept what medicine has to offer in terms of treatment… so… i’m a police officer, and will use a police analogy to treatment for cidp– allow me to describe our “use of force” policy or hierarchy… essentially we have an escalating/de-escalating use of force structure that is listed as follows:
1) verbal commands
2) physical control
3) pepper spray
4) carotid restraint
it is designed as a guide– with the idea being, one should always use the least force necessary and reasonable to enforce the law. but wait, it gets tricky when we are confronted with dangers that require us to skip steps and choose which level of force is both the least and will be effective… for example– you hear shots fired in front of a bank and then see a man exiting the bank with a gun in his hand… it’s not hard to imagine that a lot of steps or levels of force will and should be skipped in this scenario.
the analogy with the frontline cidp treatments and when you choose to skip ahead in terms of force against cidp, is similar. now, as an officer, if you choose too low and say, try to wrangle with a suspect (level #2) when he is armed, you likely will be harmed– just as we are harmed by immune-suppression drugs, etc. my body has certainly been weakened by the meds i have taken… i’ve got my firearm out now:cool: and i’m taking aim… i’m choosing deadly force against the suspect: cidp.
pardon my rant–
prednisone is like a motor that runs inside of me 24/7…
i can’t wait for chicago.
hugs to all,
I see that you haven’t posted in over 24 hours, so I hope that means you’ve been admitted to the hospital and are receiving the treatment you so badly need in order to get better.
Our prayers are for a recovery beyond your wildest expectations!
Kevin (a.k.a. KHS730)
Thanks for the tips to ask the doctor. He did have me try Celebrex and I had a severe reaction to it. The Cymbalta gave me nose bleeds every morning. But I haven’t tried the Gabapentin as of yet and will ask about this when I see him next time. Your right that the Lyrica doesn’t stop feeling the pain for long, but after having this progress in such a fast period of time any little relief is okay with me.
I do hope that one day there will be some kind of cure for this disorder. I am trying to do every test they have conceivable out there for me to do for them. See my half brothers and sisters and full blooded sister all have signs of this disorder starting or in remission right now. But all I am doing is trying to make sure that my children do not carry this with them.
Again thank you very much for the suggestions.
Hugs to you also 🙂
Hi Linda! Have you been checked for Asthma! That can cause problems like you are describing. Funny thing! A person can be fine for many years and then suddenly develop Asthma. Adult onset of Asthma! I was 40 years old and fine to suddenly wake up one morning with respiratory problems. Sat at home trying to doctor it thinking I had a respiratory virus and then finally got irritated and went to the doctors. They did a pulmonary functioning test and it came out being asthma! They are reporting more cases than ever because of the ozone and greenhouse effects. Air quality is so bad that each year thousands are getting reported for developing Asthma. And people with Auto Immune problems are usually a target! Hope you feel better soon. Think I would check with your doctor and have him test you for this. You might start feeling better! Hugs
Hi Linda! You keep up the positive and you will see yourself get better. I am glad you posted and did notice that you were not around. But am glad things are getting better! Time will heal all wounds! Old saying that at times can be true. You are a fighter and that is all that counts. You go girl!!!!:D
I’m feeling better except for that nasty Rituxan treatment. Better get offline! Seeing double wrting and need to get to bed but will be posting more tomorrow. Wishing you my best! Missed ya in here! Good luck!
Hi Linda! I am glad to see that you were getting better but sad that you may be getting problems again. Maybe you were over pushing yourself with the tap dancing and it caused another flare up! I hope it was just that and that you end up feeling better soon! Hope your neuro does have the answer and gets help soon! Hugs
I have a hard decision to go back to school and learn the office assistant.I believe I’m not the office type guy. since all my jobs were all physical and outdoors. I still can’t see myself behind a desk. And thats what I had explain to my vocational counselor. what should I do that I only can do so much now and I’m not very happy going as an office assistant certification but would like to earn a degree.
It is the night before your surgery….I just wanted to say that I am thinking about you and that we hope and pray that all will be well tomorrow. I hope that the thyroid thing is the main cause of it all…and once you get rid of the monster…. 🙂
Anyway, the next few days are likely to be lousy for you…but at least the waiting is over and you will hopefully be on a positive, uphill track.
Take care and know that all our on-line family is thinking happy, positive outcome thoughts and sending them your way!!! What a powerful thing.
Cheers, take care and get well really soon.
Welcome. I have CIDP and have major problems with fatigue. Just normal activity like shopping or house work can really wipe me out. When my IVIG is wearing off (and before I was treated), I can get exhausted just getting ready to go to work. I’ve learned to accept that I can’t do as much as I used to, and try to rest between tasks. When I really over-do it, I pay the price — sometimes for the entire next day.
When I mention the persistent fatigue to both my regular doctor and neuro, neither react like it’s CIDP-related. But I think it is based on how bad it is/was before the IVIG infusions. I also don’t sleep well — haven’t for years — so my docs want to test me for sleep apnea. Apparently people with neuromuscular disorders are more prone to it than “normal” people, but I’m not up for it just yet. Maybe some day.
Take care and rest, rest, rest!