Susie

[Guest guest]

Susie,

I'm extremely worried about you and sorry that you are still having big

trouble. Don't apologize for being on the Pity Pot. You have every right to

be there. We will try not to let you stay on there too long, but, for now,

just come and vent when you need to. You are suffering greatly, and you

don't have the answers and treatment you need yet. I'm sure it's extremely

upsetting and frustrating, not to mention painful.

Tery's offer is a good one. Tery knows and likes her doctor; he listens, he

tries his best to help her. There is much to be said about a personal

recommendation, especially coming from someone like Tery who has been

through so much. What you describe here about the doctor and physician

assistant (PAC = Physician Assistant - Certified) you are seeing doesn't

sound like quality care. You need and deserve compassionate help.

As Patsy and a have suggested regarding the symptoms of trembling in

your arms, hands, and right leg, you may want to consult a neurologist, too.

Or maybe you should consider going to the ville location of the Mayo

Clinic, especially since you are wondering if your diagnosis is correct or

if you have a complete diagnosis (As a noted, a negative RF does not

rule out RA.). There you could see a number of specialists that they would

recommend over the course of a couple of days. Then a local physician could

implement the treatment plan they come up with.

And I think it IS oddly comforting to know that there are other people

related to us with some of the same or related physical problems. Then it

seems as though there really is a reason for our illness, a link, an

explanation. Try not to worry about your daughters. Let's hope that these

diseases are conquered by the time they reach the high-risk age.

One last thing. I looked around in cyberspace about your involuntary muscle

movements. Such symptoms are described in fibromyalgia and other conditions.

I also saw in a number of places that magnesium deficiency is thought to be

responsible for such symptoms in some cases (you may take in a normal

amount, but your body may not use it correctly). Here is a link that

includes some interesting studies on serum magnesium levels and disease

(including in fibromyalgia):

http://www.ithyroid.com/magnesium.htm

In a book that I have called " Making Sense of Fibromyalgia, " Dr.

Wallace has this to say: " ...magnesium plays a central role in muscle

contraction. An interesting preparation containing magnesium and malic acid

(available as Super Malate and Fibroplex, among other names) is available

from health food stores. Controlled studies from England and Texas in

peer-reviewed journals have documented modest effects of this preparation on

muscle spasm, fatigue, and pain in fibromyalgia. If patients take a dose

larger than that recommended on the bottle (two very large pills three times

a day), its effects become apparent within a week; side effects are

uncommon. This combination may work as a result of interactions between

magnesium and calcium channels within muscles and the generation of

adenosine triphosphate (ATP), our cellular fuel. It occasionally induces

diarrhea, drowsiness, lightheadedness, and dizziness at high doses. "

This might be worth a try for you, especially since you've had such a hard

time with prescription drugs.

My sincere wishes for a better 2001 for you, Susie!

----- Original Message -----

From: " Elf " <sheadley@...>

< egroups>

Sent: Sunday, December 31, 2000 3:42 PM

Subject: Re: [ ] Hands and FMS

> Hi Tery

> No I did not go to Jax. I did find a Dr. here in Brunswick. A Dr.

> Bournigall (I think it is spelled wrong!) Excuse this email if it gets

> confusing... I can't think straight right now I hurt so bad, and am so

> angry at me:

> This Doctor saw me ONCE. Gave me meds, and I went back after 1 month.

> The REMERON was impossible for me to take, and he did give it in

> combination with the EFFEXOR. I don't know why the 2 together. I took

> the REMERON a week before starting EFFEXOR. The headache was like a

> stroke, with REMERON, so I dropped it.

> The Dr. did note that the EFFEXOR seemed to be making my Blood Pressure

> high. So I was told to watch it. (duhhhh)

> He then made me an appointment for 3 months later!!!!

> I was is awful pain still. He said EFFEXOR would help that. So I finally

> broke down and called them back and made another appointment (before 3

> months!). I went in. The Dr. did not see me this time! Here I was

> having trouble starting on ANY meds, and he has me seing a PAC (what is

> this anyway?)

> He was named (last name) . I saw him. I did not know what to call

> him. PAC is at the end of his name. And he can not write prescriptions,

> he has to go to the Dr. to get them written, then brings them back to

> me.

> He gave me the 300 NEURONTIN for pain. He said take one 3 times day.

> then in a few days, take 2, 300 mg. capsules, 3 or 4 times a day.

> I won't even go into the side effects on that crap. But I will say, I do

> not, nor never have drank... but I do know, that if anyone wants a good

> " high " ... take this stuff. (kidding)

> So, HE made me an appointment for 3 months later...

> I called back crying in pain (on the floor) a week later... the nurse

> told me, to keep trying NEURONTIN, and to try to wait for my next

> appointment. I was appauled.(I had broke out in hives with it also.)

> So... I said, " Well, then if I have to live in THIS pain, I don't think

> I will be around then... maybe not even tomorrow! "

> ... she let me come in first thing the next morning.

> So, " whoever " , PAC walked in again... told me that he would

> switch to something better for the pain... he gave me the TOPAMAX (sp?)

> and commented again on how high my BP was. He gave me a little chart,

> and said to chart my BP every day, until my next THREE MONTH

> APPOINTMENT.

> (@#$$))))!!!!!!!)

> So, each day, I checked BP. It stayed 168 + over God knows what, up

> until last week... when *I DECIDED* to take ME OFF the EFFEXOR. (which

> did not help " energy lever " nor " pain " at all after taking awhile)

> So... now I am Med-less, and hurt worse than before I was diagnosed. And

> it is 2 months until my next appointment!!!!!! But amazingly, my BP is

> now down to around 120 over 88 (which is very good as far as I am

> concerned!) I know now, how much my body was in " distress " while taking

> the EFFEXOR... it just eased up slowly, and I did not notice, until it

> was out of control, and stayed high for so long. I wonder if the high BP

> for that long caused any damage?

> I am fed up with it all...

> I so admire those of you who handle the Arthritis and FMS with so much

> grace and good attitude. I envy you for your strength. I guess I am a

> sissy.

> I can see why we occasionally get those moments when we really do NOT

> want to wake up one more day to this junk.

> I do Genealogy. I just found a cousin I never knew. We have common Great

> Grandparents. She has FMS, and arthritis. Her sister has it. And she

> informed me that several of our Aunts and cousins had had it. (2 had

> commited suicide reciently)

> I also found out that my first cousin has it that I grew up knowing.

> So isn't this comforting to know. Ha! Now I worry about my daughters.

> There has got to be a genetic link to the FMS. It just has to.

> I guess by now, you can all tell I am on a " ME, ME, ME, PITY POT " , can't

> you?

> So Tery, if you have a good Doctor, please let me know the information.

> I will consider going to him.

> Thank you for remembering me. If I end up at your Doctors office, maybe

> you and I can schedule appointments on same day and have lunch. I would

> love to meet you.

> I know it is hard for me to remember anything. That is the pitts also. I

> guess these sicknesses rob us of everything precious.

> Susie