For Those Where Cidp Has Hit Your Autonomic System
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April 5, 2009 at 3:20 pm
Hi all,
Hope all are having a nice weekend.
This is for those where their CIDP has hit their autonomic system.
My neuro is very good, and is head of neurology at the local hospital.
He keeps up with new procedures or meds for CIDP, and has 4 patients with CIDP, though he told me I am his worst patient with it as I am slowly sliding downhill.
My CIDP hit my autonomic system about 2 years ago, (dysautomia).
He read in one of his doctor journals, that the drug, Mestinon, which is usually used to treat Myasthenia Gravis, can help people with CIDP where it attacked the autonomic system. He said it can help the nerves controlling the muscles to work better. If you google “Mestinon”, it has not been updated to say it would help CIDP yet, though it does mention that it does help the nerves controlling the muscles.
I was first put on it at 60mg twice daily, and later increased to four times daily. I cannot tell you if it is helping or not. But of lately, I have been having problems choking/swallowing, as due to the CIDP, I have
Dysautonomia with dysphagia and gastroparesis and esophageal dysmotility.
Perhaps it would be worse right now–I don’t know…as I cannot tell if it point-blank helping me or not.
Perhaps you can mention it to your own neuro so that it might help yourself.
KEDASO -
April 5, 2009 at 6:35 pm
Ken when I was at my worst in the hospital – everything was going wrong from eyes down paralysis to blood pressure, heart rate, breathing, everything just kept getting worse hour by hour etc. They didn’t know what was wrong so started me on IVIg. I kept going down hill for several more days with test after test to no avail. At that time they suspected Mysthenia Gravis because of the facial paralysis and so started me on Mestinon. The day I started Mestinon was day 5 of my IVIg treatment. I felt better almost immediately and so I continued on Mestinon for about 6 more weeks but slowly it started having the opposite effect on me. It stopped helping me breathe better and started making it more difficult to breathe. I soon quit taking it and haven’t taken it sense. All of my doctors believe it was the IVIg that finally made the turnaround as they keep saying 5 days is the magic number and that because the Mestinon stopped working it could not have been that. However – it did work for a time and I did make a remarkable turnaround the same day I was given Mestinon and I can’t think that is too much of a coincidence. BTW if you try it… well lets’ just say I wasn’t walking well enough to get to the bathroom and it definately had an effect on my digestive system… 😉
Julie
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April 5, 2009 at 6:44 pm
Hi Kedaso,
I’m so sorry that your CIDP has ‘hit’ your autonomic nervous system. Your Neuro sounds great – I bet it is comforting to know that your Doc is keeping up to date with the latest medical research.
Anyway, I have had CIDP for ages – (it feels like ages anyway!) actually it’s been several years since it has made it’s presence known in a big way. I won’t include the numb toes and weakness that started about 10 years ago.
My autonomic system has been affected since my first attack (several years ago). CIDP has affected my blood pressure, swallowing, gastric emptying, body temp, sweating, bladder – even tear production.
During my first attack, it was thought that I had MG – as my cranial nerves were affected (as well as my other nerves). I had ptosis, double vision and the usual terrible weakness with swallowing probs, etc. While I was waiting for my tests to come back regarding MG – I was given mestinon to take for about a week – after the results came back negative for MG I was taken off it immediately. Though, I found that during that week after taking the medication it gave me some strength -Eg: I could hold a cup of tea without my arm shaking so terribly from weakness as to spill it – though, this strength lasted about half an hour and then that was it.
That’s my experience anyway. Sadly, no one could work out what I had for a few more years – and I never had treatment for my CIDP then. I wouldn’t wish that on anyone!
All the best,
Kazza -
April 6, 2009 at 4:36 pm
Thanks for the replies…
First, I am very bad about taking pills…I usually take pills two times daily, (morning and night), even though prescriptions are written for me to take three or four times a day…okay, yeah–naughty me…
With the Mestinon 60mg, my neuro wrote the script about 1 1/2 years ago for twice daily, which I have been taking, then about 1 year ago, increased it to four times daily when I was having choking/swallowing problems again.
I took it for a few days, then naughty me, went back to the two times daily.
I guess I should have been taking it for the FOUR TIMES DAILY, as now the swallowing/choking is getting worse.
NOW, I am definitely taking it four times a day.
Like I mentioned in my post–I cannot tell if it is or is not helping me, as it is something you can’t tell…Though, even though I am still slowly sliding downhill, perhaps if I wasn’t taking the Mestinon, it could be worse, (?).
My neuro told me the article he saw, said it would help with dysautonomia, (problems from neuropathy hitting the autonomic system).
KEDASO -
April 7, 2009 at 1:08 pm
Thanks for bringing this up Ken. I’ll research it more and check it out with my drs. Take Care.
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