Re: medication sensitivities

[Guest guest]

,

I recall you saying that you were sensitive to med......BOY! so am I!

I'm sure there are others that are also with CMT.....So how do you get docs to

understand? My last doc nearly killed me and I ended up in the hospital for

seventeen days..I dont know what to do with me.

Geri

[Guest guest]

Every time I am prescribed anything for anything I make sure my doctor

knows I need the lowest dose made and, if available, time release or

patch. If needed I can go up. I don't leave the doctor's office until

he assures me he actually has thought about what he's prescribing as

far as strength and dosage goes. When I was younger, I go what he gave

everyone else. As they did me in because they were all too strong, I

learned to tell the doctors that I wanted either a child's dose or the

lowest dose made if it was a pill.

Even then I've been hit really hard by some so-called pain meds usually on the

market for other conditions like epilepsy and asthma meds. I've even gone into

what felt like shock: cold clammy, faint, etc. Neurontin did that to me. A

laundry marker can do it to me, too.

It's got something in it that I simply cannot tolerate. Perfume gives me instant

brain fog. If someone in a meeting is wearing perfume I might as well not be

there because I won't be able to think straight or add to the conversation.

You have to be aware of what adversely affects you and beware of the

drugs that can do you in to protect yourself.

>

[Guest guest]

People with CMT do not have the muscle to absorb the medicine so it hits

our blood stream a lot harder.

[Guest guest]

Thank you ,

Some meds will do the opposite on me. I never know what ones .....My B.P. shot

up to 258 on one of the meds. The doc couldn't believe what he was seeing.....I

also have trouble with sprays esp. bug spray.

Deet.. among others are so bad and also perfumes. Dyer sheets and so many other

things. I'm such a mess and wonder what brings on these things.

Geri

>

>

[Guest guest]

Dryer sheets, bug spray, laundry markers, perfume, BBQ starter fluid,

etc. I saw a paper recently on my CMT2A and it mentioned some

chemicals we'd be adverse to but can't locate it now.

[Guest guest]

Thanks ..I keep forgetting about that!

Geri

<People with CMT do not have the muscle to absorb the medicine so it hits our

blood stream a lot harder.>

[Guest guest]

This is important for everyone to know about themselves and keep in their

personal medical journal. Every 6 months or so update it and make sure your

primary doc, either GP or Internist has a copy. Yes, it may take some work and

education on your part, but it is important to stay current.

As for medications, we have seen that our DNA (CMT or not) plays a big role in

what works/what doesn't.

My experience: I had a bladder infection. Was given a Sulfa drug (Bactrim) OK

fine. This was the era before PCs. I stayed home from work, stayed in bed with

liquids. Ok fine. Got out of bed to have a bite of lunch. Wierd, I was stumbling

and bumping on walls. OK. Not Fine. Back to bed. Up for a bite of dinner, by

that time had 3 doses of Bactrim in me, and OMG, I was walking as if I'd been

drinking Tequila shooters all night. Not Good at all.

So I phoned my pharmacist with a 'help, I think this medication is

making me worse' cry) He did a chemistry check on his registry and I learned

Bactrim in a sulfa drug. Sulfonamides are on the CMT Medical Alert list, at the

bottom, but still there. said to stop it at once, which I intended to

anyway, called my doc and asked for another recommended that did not

have any interactions or effects with the neuromuscular system.

Experience #2: A neurologist gave me Phenytoin for tremors. Now this was in the

beginning age of PCs. I got the script filled and took one. An hour later I

started stumbling and falling. WTF? So I looked on the Medication Alert List

only to realize Phenytoin is Dilantin and it IS on the list. Threw the rest

away, the neuro and internist had 'some others WE can try' (oh yeah WE as in me

and my body) I blew them both off, asked my trusted orthopedist to recommend a

neurologist, got an appointment within the week and a prescription for

Symmetryl. Tremors Be Gone and no stumbling, falling, other ill effects.

At the pharmacy, I had a chat with the Head Pharmacist and gave her the

Medication Alert List and asked her to cross-check any and all medications I am

ever prescribed, which she does.

There was a time in the era before PCs where I would buy the PDR book from

nursing students when the latest edition came out. Not much had changed and it

was a good reference. Now it's online and my Internist also has a hand held

electronic one.

My point is, we live in a different era. Consumers MUST be aware of what they

are prescribed. Use the Internet, Ask your pharmacist. Check it out. While I'd

like to believe all Drs. know what they are doing, there are ones that don't and

don't care. I mean no disrespect to Drs. Some are my very good friends. But,

those of us with CMT, need to be vigilant about our medications, the

derivatives, the chemistry, warnings, etc.

Gretchen