question

July 30, 2001

Shari, hi, I hope your wedding was fantastic!

I am sorry that you are having some bleeding and

pains. I am glad to hear that the spotting doesn't

seem to be too much, that was my problem, I had heavy

bleeding for almost 12 weeks. However, I never had

any pain, and I don't know if that is because my ep

was on the right ovary instead of in the tube and

maybe there was more room for it to grow. I don't

know. But, I would keep an eye on the pain, and you

might want to give the doctor a call to see what they

think about it. I hope you get to feeling better.

--- Shari wrote:

> I had my injection on Wednesday July 25th. I have

> been experiencing

> spotting, some bleeding and pains. How long will it

> take for the

> cramping and pains and spotting to stop? My HG

> level is down to 3500

> from an original 8000. The pains are bad, just

> uncomfortable

> espicially at night, trying to find a comfortable

> position to sleep.

> The spotting isn't bad, but I have to wear a pad

> constantly.

>

__________________________________________________

September 19, 2002

Dawn,

I don't know if this will help, but I was Dxed by a neurologist. It

was because of my elevated ANA (anti-nuclear antibodies) that I was

referred to the rheumatologist. In fact, he seemed a bit puzzled

initially as to why I was referred to him. But then the rheumy Dxed my

Sjogren's.

They have finally conferred and started me on methotrexate 15 mg/once

a week, beginning today. The neuro told my internist that my meds

really needed to be monitored by a rheumatologist. The rheumy will

monitor my regular blood tests.

If possible, you might consider going to both. The neuro will look at

the neuromuscular aspect. I can't remember if you've had the EMG and

biopsy done. If so, he may want to repeat if it's been awhile. Or he

may be able to use your old test results. The rheumatologist will

probably know more about your Sjogren's. My neurologist admitted he's

less familiar with SS.

If you do see the neuro first, tell him about your appt with the

rheumy. Having two top docs consulting on your case could be the best

of both worlds if the insurance/MDA works out.

You're lucky to have such great choices!

Tenayahh

> Okay, I also just got off the phone with the Dr. who treated my

friend's

> brother who has PM, that I was telling you about. Apparently, she's

a

> Rheumy, not a specialist for PM, but does see quite a few patients

with

> PM. I asked what the waiting time would be to get in and they said

Nov.

> or possibly sooner. That's not bad!!

>

> So my question is this: Would you see her (a Rheumy) or would you

try

> this Dr. Genge whose a NeuroMuscular specialist and is very well

known

> and who treats many patients as well with all different myopothies.

I

> actually got a man's name from the MDAC who has IBM and who lives in

> Montreal and he sees Dr. Genge. He is involved in an IBM support

group

> in the MOntreal area and has nothing but good things to say. But I

just

> wonder....Rheumy or Neuro Muscular specialist?? What do you all

think??

>

> Thanks,

> Dawn

September 19, 2002

Hi, Tenayahh. Thanks for your input. Unfortunately, I'll only be able to go

to 1 of these Dr's., since the MDAC is footing the bill. I'm leaning toward

just keeping my appt. w/ the neuromuscular specialist, since I've already had

the EMG & biopsy (in Jan.) and a firm dx. I basically just want a

re-assessment, mainly for Disability, but I also want a battery of tests run

to rule out some other things (Lupus, Rhematoid Arthritus, MCTD, etc). Great

news that you've finally been started on some meds. No Prednisone or are you

already taking it???

Take care,

DAwn

tenayahh wrote:

> Dawn,

>

> I don't know if this will help, but I was Dxed by a neurologist. It

> was because of my elevated ANA (anti-nuclear antibodies) that I was

> referred to the rheumatologist. In fact, he seemed a bit puzzled

> initially as to why I was referred to him. But then the rheumy Dxed my

> Sjogren's.

>

> They have finally conferred and started me on methotrexate 15 mg/once

> a week, beginning today. The neuro told my internist that my meds

> really needed to be monitored by a rheumatologist. The rheumy will

> monitor my regular blood tests.

>

> If possible, you might consider going to both. The neuro will look at

> the neuromuscular aspect. I can't remember if you've had the EMG and

> biopsy done. If so, he may want to repeat if it's been awhile. Or he

> may be able to use your old test results. The rheumatologist will

> probably know more about your Sjogren's. My neurologist admitted he's

> less familiar with SS.

>

> If you do see the neuro first, tell him about your appt with the

> rheumy. Having two top docs consulting on your case could be the best

> of both worlds if the insurance/MDA works out.

>

> You're lucky to have such great choices!

>

> Tenayahh

>

> > Okay, I also just got off the phone with the Dr. who treated my

> friend's

> > brother who has PM, that I was telling you about. Apparently, she's

> a

> > Rheumy, not a specialist for PM, but does see quite a few patients

> with

> > PM. I asked what the waiting time would be to get in and they said

> Nov.

> > or possibly sooner. That's not bad!!

> >

> > So my question is this: Would you see her (a Rheumy) or would you

> try

> > this Dr. Genge whose a NeuroMuscular specialist and is very well

> known

> > and who treats many patients as well with all different myopothies.

> I

> > actually got a man's name from the MDAC who has IBM and who lives in

> > Montreal and he sees Dr. Genge. He is involved in an IBM support

> group

> > in the MOntreal area and has nothing but good things to say. But I

> just

> > wonder....Rheumy or Neuro Muscular specialist?? What do you all

> think??

> >

> > Thanks,

> > Dawn

>

September 19, 2002

Hi, Tenayahh. Thanks for your input. Unfortunately, I'll only be able to go

to 1 of these Dr's., since the MDAC is footing the bill. I'm leaning toward

just keeping my appt. w/ the neuromuscular specialist, since I've already had

the EMG & biopsy (in Jan.) and a firm dx. I basically just want a

re-assessment, mainly for Disability, but I also want a battery of tests run

to rule out some other things (Lupus, Rhematoid Arthritus, MCTD, etc). Great

news that you've finally been started on some meds. No Prednisone or are you

already taking it???

Take care,

DAwn

tenayahh wrote:

> Dawn,

>

> I don't know if this will help, but I was Dxed by a neurologist. It

> was because of my elevated ANA (anti-nuclear antibodies) that I was

> referred to the rheumatologist. In fact, he seemed a bit puzzled

> initially as to why I was referred to him. But then the rheumy Dxed my

> Sjogren's.

>

> They have finally conferred and started me on methotrexate 15 mg/once

> a week, beginning today. The neuro told my internist that my meds

> really needed to be monitored by a rheumatologist. The rheumy will

> monitor my regular blood tests.

>

> If possible, you might consider going to both. The neuro will look at

> the neuromuscular aspect. I can't remember if you've had the EMG and

> biopsy done. If so, he may want to repeat if it's been awhile. Or he

> may be able to use your old test results. The rheumatologist will

> probably know more about your Sjogren's. My neurologist admitted he's

> less familiar with SS.

>

> If you do see the neuro first, tell him about your appt with the

> rheumy. Having two top docs consulting on your case could be the best

> of both worlds if the insurance/MDA works out.

>

> You're lucky to have such great choices!

>

> Tenayahh

>

> > Okay, I also just got off the phone with the Dr. who treated my

> friend's

> > brother who has PM, that I was telling you about. Apparently, she's

> a

> > Rheumy, not a specialist for PM, but does see quite a few patients

> with

> > PM. I asked what the waiting time would be to get in and they said

> Nov.

> > or possibly sooner. That's not bad!!

> >

> > So my question is this: Would you see her (a Rheumy) or would you

> try

> > this Dr. Genge whose a NeuroMuscular specialist and is very well

> known

> > and who treats many patients as well with all different myopothies.

> I

> > actually got a man's name from the MDAC who has IBM and who lives in

> > Montreal and he sees Dr. Genge. He is involved in an IBM support

> group

> > in the MOntreal area and has nothing but good things to say. But I

> just

> > wonder....Rheumy or Neuro Muscular specialist?? What do you all

> think??

> >

> > Thanks,

> > Dawn

>

September 19, 2002

Dawn,

I'm sure whichever choice you make will be a wise one. When I first

signed on to this list you were in such despair and look what has

happened! I'm sure you'd feel more reassured if your husband could

accompany you, but hey! He has that job that seemed so far away just a

month ago.

Another great example of hanging in there and trusting in the future!

No Prednisone

or are you

> already taking it???

>

Both docs agree that they want to avoid putting me on corticosterones.

Didn't really say why.

It may be because of the question whether PM or IBM. I think they

don't want to chance the meds doing lots additional damage to my body

that needs to be undone later. They are concerned that my symptoms go

back at least 7 to 10 years.

The neuro usually prescribes CellCept, but the rheumy, who will be

monitoring my bloodwork, is more familiar with MTX. Sounds like he

hasn't used CellCept at all, since he said he looked it up and it

sounded like it had more potential for liver damage than MTX. He also

thought there might be an insurance issue.

Since the neuro is 2 hours away and I won't be seeing him for another

4-6 months, it seems better to go with the local flow for now, since

they have agreed.

If MTX doesn't work I'll look further into the CellCept.

My dad has taken MTX by injection for years and gets good control of

his rheumatoid arthritis without bad side effects so far. He does wear

long sleeves due to the severe and ugly bruising on his arms. He's

also nearly 82 so has the very thin skin of that age.

It's another step in this adventure that none of us chose!

Tenayahh

September 20, 2002

So true.....it's amazing.

Dawn

tenayahh wrote:

> Dawn,

>

> I'm sure whichever choice you make will be a wise one. When I first

> signed on to this list you were in such despair and look what has

> happened! I'm sure you'd feel more reassured if your husband could

> accompany you, but hey! He has that job that seemed so far away just a

> month ago.

>

> Another great example of hanging in there and trusting in the future!

>

> No Prednisone

> or are you

> > already taking it???

> >

>

> Both docs agree that they want to avoid putting me on corticosterones.

> Didn't really say why.

>

> It may be because of the question whether PM or IBM. I think they

> don't want to chance the meds doing lots additional damage to my body

> that needs to be undone later. They are concerned that my symptoms go

> back at least 7 to 10 years.

>

> The neuro usually prescribes CellCept, but the rheumy, who will be

> monitoring my bloodwork, is more familiar with MTX. Sounds like he

> hasn't used CellCept at all, since he said he looked it up and it

> sounded like it had more potential for liver damage than MTX. He also

> thought there might be an insurance issue.

>

> Since the neuro is 2 hours away and I won't be seeing him for another

> 4-6 months, it seems better to go with the local flow for now, since

> they have agreed.

>

> If MTX doesn't work I'll look further into the CellCept.

>

> My dad has taken MTX by injection for years and gets good control of

> his rheumatoid arthritis without bad side effects so far. He does wear

> long sleeves due to the severe and ugly bruising on his arms. He's

> also nearly 82 so has the very thin skin of that age.

>

> It's another step in this adventure that none of us chose!

>

> Tenayahh

>

September 20, 2002

Go to both and see what they say. Or go to who ever is closer and if you don't like what they have to say, go to the other for a second opinion. OR, you could get in to whoever is open first and if you don't like them, again, wait for the other one to open up. Make an appointment with both. Although it is not a neuromuscular disease, I know that there are some people being treated by neurologists so it can't hurt to make an appointment with both and see what each has to say....

Zanna

September 20, 2002

Go to both and see what they say. Or go to who ever is closer and if you don't like what they have to say, go to the other for a second opinion. OR, you could get in to whoever is open first and if you don't like them, again, wait for the other one to open up. Make an appointment with both. Although it is not a neuromuscular disease, I know that there are some people being treated by neurologists so it can't hurt to make an appointment with both and see what each has to say....

Zanna

September 20, 2002

Go to both and see what they say. Or go to who ever is closer and if you don't like what they have to say, go to the other for a second opinion. OR, you could get in to whoever is open first and if you don't like them, again, wait for the other one to open up. Make an appointment with both. Although it is not a neuromuscular disease, I know that there are some people being treated by neurologists so it can't hurt to make an appointment with both and see what each has to say....

Zanna

September 27, 2002

Actually, the $400 would be for both hotel and food. We would have to

take taxis while we are there, so I wonder how much that will add up

to. And yes, Canada is much more expensive then the States...

Dawn

mrsxanadu@... wrote:

> I think $400.00 is more than enough for food for two days. Although

> I have heard that Canada is a bit more expensive than the US. Is that

> the cheapest you could get a hotel for? And how will get around while

> you are there?

>

> Zanna

>

September 27, 2002

Actually, the $400 would be for both hotel and food. We would have to

take taxis while we are there, so I wonder how much that will add up

to. And yes, Canada is much more expensive then the States...

Dawn

mrsxanadu@... wrote:

> I think $400.00 is more than enough for food for two days. Although

> I have heard that Canada is a bit more expensive than the US. Is that

> the cheapest you could get a hotel for? And how will get around while

> you are there?

>

> Zanna

>

September 27, 2002

Actually, the $400 would be for both hotel and food. We would have to

take taxis while we are there, so I wonder how much that will add up

to. And yes, Canada is much more expensive then the States...

Dawn

mrsxanadu@... wrote:

> I think $400.00 is more than enough for food for two days. Although

> I have heard that Canada is a bit more expensive than the US. Is that

> the cheapest you could get a hotel for? And how will get around while

> you are there?

>

> Zanna

>

October 29, 2002

I don't think you should much worry about it. My husband comes across as rude sometimes. He is just very hard to get to know. He is pretty reserved. It took me several years to realize that he is just 'like that'. Even his guys at work said it took them a couple of years to understand him! He can be very personable though.

Does Kirk know that he may come across like that at times? He may not even realize that he sends that impression and he probably would feel bad if he knew. The only thing important here is that he treats you and the kids well, and he does. You seem to have a great husband here and people need to see that as well.

Zanna

October 29, 2002

I don't think you should much worry about it. My husband comes across as rude sometimes. He is just very hard to get to know. He is pretty reserved. It took me several years to realize that he is just 'like that'. Even his guys at work said it took them a couple of years to understand him! He can be very personable though.

Does Kirk know that he may come across like that at times? He may not even realize that he sends that impression and he probably would feel bad if he knew. The only thing important here is that he treats you and the kids well, and he does. You seem to have a great husband here and people need to see that as well.

Zanna

October 29, 2002

I don't think you should much worry about it. My husband comes across as rude sometimes. He is just very hard to get to know. He is pretty reserved. It took me several years to realize that he is just 'like that'. Even his guys at work said it took them a couple of years to understand him! He can be very personable though.

Does Kirk know that he may come across like that at times? He may not even realize that he sends that impression and he probably would feel bad if he knew. The only thing important here is that he treats you and the kids well, and he does. You seem to have a great husband here and people need to see that as well.

Zanna

October 29, 2002

I know for sure that he doesn't realize that he comes across like that

and he definately doesn't intend to. It's just his way, plus he HATES

talking on the phone. Nobody seems to have a problem with him one on

one, it's just on the phone. I cried when my Aunt told me this, because

it hurts to think that family or friends aren't calling me for fear of

talking to Kirk, you know? I'm going to try answering the phone more

myself from now on. Usually, he answers it. But, I don't think I'll

tell him. I really hate to hurt his feelings about something so silly.

And believe me, my family raves about how wonderful of a husband he is

and father, especially since my PM dx.

Dawn

mrsxanadu@... wrote:

> I don't think you should much worry about it. My husband comes

> across as rude sometimes. He is just very hard to get to know. He is

> pretty reserved. It took me several years to realize that he is just

> 'like that'. Even his guys at work said it took them a couple of

> years to understand him! He can be very personable though.

>

> Does Kirk know that he may come across like that at times? He may not

> even realize that he sends that impression and he probably would feel

> bad if he knew. The only thing important here is that he treats you

> and the kids well, and he does. You seem to have a great husband here

> and people need to see that as well.

>

> Zanna

>

October 29, 2002