Re: TOM! 2 Things - (a) Imitrex, and (b) Swelling / Lump On Leg

[Guest guest]

Tom, have you been tested for Vonleidens or FVL? ( same thing, different

names) Its a genetic blood discratia that makes us clot too much causing

everything from headaches to strokes to DVTs. I have it and the treatment

can be as simple as Plavix or up to coumadin , depending on what type FVL.

I can tell you those headaches are what made my neuroLLMD look into it and

w/the treatment those headaches are a whole lot fewer.

[Guest guest]

Thanks for the information - I'm phoning my PCP this AM, until I see my LLMD in

2 weeks. I'll ask them to test me for FVL - I'm almost certain they never

tested me for this...Tom

Re: [ ] TOM! 2 Things - (a) Imitrex, and ( Swelling / Lump

On Leg

Tom, have you been tested for Vonleidens or FVL? ( same thing, different

names) Its a genetic blood discratia that makes us clot too much causing

everything from headaches to strokes to DVTs. I have it and the treatment

can be as simple as Plavix or up to coumadin , depending on what type FVL.

I can tell you those headaches are what made my neuroLLMD look into it and

w/the treatment those headaches are a whole lot fewer.

Questions and/or comments can be directed to the list owner at

-Owner

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[Guest guest]

I phoned my PCP this AM, and have an appt. tomorrow. I also nicely asked the

ophthalmologist's lab to speed up my MRI scheduling (brain lesions, plaque,

etc.) - which they are. I'd like to be alive and in no worse shape than I

currently am when I see the LLMD in 2 weeks! I've asked my doctor's nurse to

schedule me for FVL testing - she never heard of it! Thanks for the help...Tom

Re: [ ] TOM! 2 Things - (a) Imitrex, and ( Swelling / Lump

On Leg

Tom, have you been tested for Vonleidens or FVL? ( same thing, different

names) Its a genetic blood discratia that makes us clot too much causing

everything from headaches to strokes to DVTs. I have it and the treatment

can be as simple as Plavix or up to coumadin , depending on what type FVL.

I can tell you those headaches are what made my neuroLLMD look into it and

w/the treatment those headaches are a whole lot fewer.

Questions and/or comments can be directed to the list owner at

-Owner

------------------------------------------------------------------------------

[Guest guest]

I've asked my doctor's nurse to schedule me for FVL testing - she never

heard of it! Thanks for the help...Tom

Von leidens/FVL/Factor V (5) is kinda new. Not many Drs know of it and

most dont really 'get it' and how to treat it. Its genetic, if you have it

a parent will and most likely siblings, both yours and parents, will also.

if both parents have it then you will have a worse case and need a stronger

med. There are 2 forms, HeteroZygous and HomoZygous , cant keep them

straight but one is for one parent having it, the other when both do.

FVL is partly why hormonal therapy for women ( birth control included)

carries the warning about heart attack, stroke and such.

[Guest guest]

Thanks for the information - I see my PCP today. I just got back from my MRI -

I had to hound the doctor's office yesterday, but they finally woke up, and

scheduled me immediately. My health care is becoming a full time job, and I

haven't even seen my LLMD yet! The crew that administered my MRI told me they

have several Lyme patients, and gave me the name of the correct neurologist (who

treats Lyme) at my health plan. Between my headaches and memory issues, I'd be

surprised if the MRI came back clear. The MRI crew told me that my health plan

sometimes sends Lyme patients to Stony Brook in New York - is that the same

place (with the bad reputation for Lyme treatment) I've heard about from this

group? Is the Lyme treatment facility the same as the Stony Brook that

administers (from what I've heard) bogus WB tests?

Re: [ ] TOM! 2 Things - (a) Imitrex, and ( Swelling / Lump

On Leg

I've asked my doctor's nurse to schedule me for FVL testing - she never

heard of it! Thanks for the help...Tom

Von leidens/FVL/Factor V (5) is kinda new. Not many Drs know of it and

most dont really 'get it' and how to treat it. Its genetic, if you have it

a parent will and most likely siblings, both yours and parents, will also.

if both parents have it then you will have a worse case and need a stronger

med. There are 2 forms, HeteroZygous and HomoZygous , cant keep them

straight but one is for one parent having it, the other when both do.

FVL is partly why hormonal therapy for women ( birth control included)

carries the warning about heart attack, stroke and such.

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

The MRI crew told me that my health plan sometimes sends Lyme patients to

Stony Brook in New York - is that the same place (with the bad reputation

for Lyme treatment) I've heard about from this group? Is the Lyme treatment

facility the same as the Stony Brook that administers (from what I've heard)

bogus WB tests?

I dont know the facts, ahvent been there myself. But I have heard of bad

things coming from there and of people , that have tested + for Lyme, being

told that they dont have it, and more.