[Hermes]

I went to the Johns Hopkins Pain Treatment Center today. The doctor asked an interesting question that I had never heard before. I was in a coma for 5 days back in 1980. He asked if I had been given Paralytic drugs in the ICU. I assume I had as I was on a ventilator and had my leg in traction. They are now discovering that the types of drugs used for that may be a cause of Polyneuropathy later on. That's 30 years later for me. Sometimes it goes away and sometimes it doesn't. It doesn't change how it is treated but is interesting to know.

They are increasing my Lyrica from 75mg a day to 300mg a day. It is to be gradually increased. The question becomes how will I tolerate the dose. I guess time will tell.

[mrsD]

30 yrs in onset...is quite a stretch. However, myasthenia gravis, may onset slowly, especially in males. (paralytic drugs affect the neuromuscular junction, and the neuropathy there is different from sensory).
http://books.google.com/books?id=jmx...opathy&f=false

Statins and Fluoroquinolones, and Flagyl remain the most common causes, today because they are used by millions of people in this country every day, so the statistics show up more quickly.

more here:
http://en.wikipedia.org/wiki/Neuromu...-blocking_drug
notice at the end of this link is a mention of fluoroquinolones as well.

[cyclelops]

I have often wondered about this myself. They use paralytics in general anesthesia too. My neuro is adamant about spinal pics, any procedures that involve injecting drugs into the spinal canal. I had 3 spinal anesthesias and then 3 nerve root blocks in my life. I also had two general anesthesia, and after the last one, in 2003 was when I woke up to feeling like I had a stroke, and they could not get my pulse or BP to get into the normal range, both were too low. One year later, they diagnosed PN. Also, I had spinal contusion in a car accident 20 some years ago.

I have a suspicion that something has plagued me since childhood, due to sleep disorders and then also restless leg, but, I am sure all the trauma didn't help.

I suppose I should be happy I made it this long, but, the suffering is not easy to bear at times....no matter how good of an attitude one has.

[Sheltiemom18]

Was just going to post about paralytic agents used in a surgery setting and read cycleops's post.

Had gallbladder surgery in 2005 under a general anesthetic, but wonder if the paralytic agent used for administering that would also be a stretch as the SFN didn't hit until 1/10.

There are so many "maybe's" for why this has happened to us it isn't funny. Who knows. Whatever it is, is here and probably going to stay for the duration.

[Kitt]

Suxamethonium is one of those drugs. A person with CMT or NMD should not have this drug. In a person with CMT we may normally leak K+ so that a further increase in the levels of K+ in the blood may cause abnormal heart rhythms. There is a test to check K+ levels.

This drug is listed on my medical alert "information" that I have in my records at the doctor's office. It is not on the Medical Alert list for CMTers but I know about it from information I have looked at from a site well known to CMTers. That site explains anesthesia and such very well. I will not have Suxamenthonium. There are other muscle relaxers that they can use if needed. Most of us are already "relaxed", so to speak, and do not need such a thing. There are other problems that it "can" cause such as hyperkalemia, malignant hyperthermia, death, etc. The Medical Alert list for CMTers is mainly for "drugs" that can raise havoc for a person with CMT.

I do not even want any muscle relaxer in pill form for cramps and such in my back as it can lay me out. Of course, Suxamenthonium is when you have an operation and is with the anesthesia. Not for me.

[mrsD]

Drugs always remain a culprit IMO... even if they don't appear on lists. Postmarketing reports are typically not done by doctors, because they don't want to admit liability issues. So reports remain very few until a long time passes, and they accumulate.

Myasthenia gravis is often not diagnosed well or promptly. If you read our forum here, you will see that issue clearly. Even after diagnosis should one be so lucky to get that, treatment is often frustrating and ineffective, and those posts are many.

There is an alarming trend today for males to appear with MG at younger ages. Our forum has that situation. Previously males were typically seen after the age of 45-50...but that is changing. MG was previously thought to be a "female" majority type condition, but there are many men on our forum here.

[Mere]

Very interesting... I have had major surgery with paralytic drugs six times and Flagyl in the hospital last year when I was suffering from Gastroparesis. S*it!

[Hermes]

The doc indicated that the drugs they used in the 1980s might be the problem ones. Not sure about that. I spent 5 days in a coma in 1980 along with 3 major surgeries. One was a spinal block and other 2 were general with one lasting over 7 hours. I had 3 additinal major surgeries in 1982, 84, & 86 all with general and one in 2001. I'd like to not have surgery anymore...

[cyclelops]

hermes, even spinal trauma or head injury has been implicated in PN, and I have had both as well. I think there are lots of methods to traumtize nerves....

[mrsD]

Originally Posted by Hermes

The doc indicated that the drugs they used in the 1980s might be the problem ones. Not sure about that. I spent 5 days in a coma in 1980 along with 3 major surgeries. One was a spinal block and other 2 were general with one lasting over 7 hours. I had 3 additinal major surgeries in 1982, 84, & 86 all with general and one in 2001. I'd like to not have surgery anymore...

I have a sneaking suspicion that this doctor is pointing you as FAR AWAY from the present as he can get, to focus your attention on a very remote possibility. This is to keep you from demanding more from him NOW, and also to keep him out of any blame loop (liability). In fact many doctors blatantly lie to patients and do not submit adverse drug reactions to the FDA to spare others pain and damage, just to cover their own butts.

You can find many many examples of this behavior on the net. It happens every day. In fact doctors will disregard your side effects from treatments for the same reason.

Sad but true. I hate having to post this. But medicine today, is not what it was. It is far more complex with very complex iffy drugs and procedures harming people every day. In fact it is the 4th leading cause of death in this country. (some say 3rd leading cause... and these numbers fluctuate depending)
http://articles.mercola.com/sites/ar...-part-one.aspx