[allen L]

hello everyone, I haven't been here in quite a while.
life has been keeping me busy and Im not much of a computer type of person, no facebook or twitter for me, my wife and children stay on top of all of that.

briefly, I retired 5 years ago a little after being diagnosed.

I started IVIG a year or so after that, tried stopping it once for 8 months, started it up again.
Im on cellcept, been feeling ok. Eyes are ok, etc..
If I overdo it, well, Im 61 and fat, with a bad knee, so if I overdo it, Im repaid in more ways than one.

Ive always been uncomfortable with my ivig infusion, every 6 weeks.
I just don't like it and the neuro told me he feels I should have stopped it a while ago once I was on the cellcept for over a year and half, but it was my choice, and I chose to stay on it as I still felt great after it.
The good feelings seemed to fade away, not sure if it was helping me at all, so last treatment I spoke to doc, he agreed, its time to stop.

my usual time was every 6 weeks.


Its been around 10 weeks, and I don't know if its my old fat body, but I cant seem to be motivated at all lately.
I laid in bed yesterday morning after breakfast until 11:30 am, something Ive never, ever done.
The day before, by 1pm in the afternoon after a little time in the garage(yes its hot, but Ive tolerated upper 70s ok), I was so beat I was in bed until 4:40 when my wife got home from work and said, hey, whats up with you lately, you always seem so worn out.
Today, while only 9:15, Im beat, and I had a good nights sleep.

does anyone with experience with Ivig think me stopping it is actually contributing to me feeling so sluggish?
Its not like me, trust me, even with myasthenia, Ive always been a bundle of energy, just a bit more tamed the past 4 or 5 years.
Maybe my weight, diabetes(but diabetes never made me feel like this), not sure, but its strange the way Im due for my infusion and I feel like just laying down.

hope everyone is enjoying the summer and feeling strong.

[waterwillow]

Hi Allen, I don't get IVIG but am on plenty of meds. Any I can get off I do. However on at least 2 occasions medication that I thought I was better off without were the ones that were keeping me afloat. So it is possible that you are now finding just where your MG is at if not fully treated.

Wait a while and if it continues bite the bullet and see your doctor.

Good Luck

Originally Posted by allen L

hello everyone, I haven't been here in quite a while.
life has been keeping me busy and Im not much of a computer type of person, no facebook or twitter for me, my wife and children stay on top of all of that.

briefly, I retired 5 years ago a little after being diagnosed.

I started IVIG a year or so after that, tried stopping it once for 8 months, started it up again.
Im on cellcept, been feeling ok. Eyes are ok, etc..
If I overdo it, well, Im 61 and fat, with a bad knee, so if I overdo it, Im repaid in more ways than one.

Ive always been uncomfortable with my ivig infusion, every 6 weeks.
I just don't like it and the neuro told me he feels I should have stopped it a while ago once I was on the cellcept for over a year and half, but it was my choice, and I chose to stay on it as I still felt great after it.
The good feelings seemed to fade away, not sure if it was helping me at all, so last treatment I spoke to doc, he agreed, its time to stop.

my usual time was every 6 weeks.


Its been around 10 weeks, and I don't know if its my old fat body, but I cant seem to be motivated at all lately.
I laid in bed yesterday morning after breakfast until 11:30 am, something Ive never, ever done.
The day before, by 1pm in the afternoon after a little time in the garage(yes its hot, but Ive tolerated upper 70s ok), I was so beat I was in bed until 4:40 when my wife got home from work and said, hey, whats up with you lately, you always seem so worn out.
Today, while only 9:15, Im beat, and I had a good nights sleep.

does anyone with experience with Ivig think me stopping it is actually contributing to me feeling so sluggish?
Its not like me, trust me, even with myasthenia, Ive always been a bundle of energy, just a bit more tamed the past 4 or 5 years.
Maybe my weight, diabetes(but diabetes never made me feel like this), not sure, but its strange the way Im due for my infusion and I feel like just laying down.

hope everyone is enjoying the summer and feeling strong.

[AnnieB3]

Allen, When you take a drug away, sometimes you can't tell that it's been working great until you do! Call your neuro and let them know how badly you're doing!

You could also ask your primary doctor to check a complete blood count and vitamin B12 levels. Thyroid, too.

I hope you'll feel better soon!


Annie

[allen L]

I see both my neuro and gp this and next week.

I just got back from a weeks worth of driving vacation, and boy do I feel washed out.
been sleeping most of today. Kind of expected it, usual for me if I drive too much.
a bit sluggish, but not more than usual.

bloodwork is Friday AM.

[waterwillow]

Originally Posted by allen L

I see both my neuro and gp this and next week.

I just got back from a weeks worth of driving vacation, and boy do I feel washed out.
been sleeping most of today. Kind of expected it, usual for me if I drive too much.
a bit sluggish, but not more than usual.

bloodwork is Friday AM.

Good luck for Friday, it's the not knowing what to do that is hardest, so lets hope your primary doctor has time to listen to your concerns. Don't be afraid to ask questions and if not satisfied ask to see a specialist in the field of your concern. Also some tests may take a week or two to become available so try to be a patient patient.

Great you were able to take a break, I really miss my car but becoming more accepting of it. Was literally falling asleep at wheel. The thought of hurting or killing someone was the last straw.

[allen L]

im not that ill water, if I get tired I let my wife drive.

Im thankful the cellcept seems to help, but it took over a year and a half until other symptoms toned down.

Now, I only feel tired if I overdo it.

and this past week, I really pushed myself, and I know better, its all about knowing my limitations and boundries.

feel good and strong.

[waterwillow]

Originally Posted by allen L

im not that ill water, if I get tired I let my wife drive.

Im thankful the cellcept seems to help, but it took over a year and a half until other symptoms toned down.

Now, I only feel tired if I overdo it.

and this past week, I really pushed myself, and I know better, its all about knowing my limitations and boundries.

feel good and strong.

Allen that is really good news for me personally that there are treatments out there and a possibility of some improvement. I am still running through the diagnosis process.

I find it hard to limit myself, the old brain shouting leave such and such until tomorrow but being a stubborn so and so I never do. Foolish but its hard to change who we are. Unfortunately my wife doesn't drive, think she may be susceptible to road rage lol.

Good luck

[finuch]

Reminds me of a Clint Eastwood Dirty Harry quote - "A man's got to know his limitations".

So true, as I found out this morning when I overdid some yard work. I didn't know at the time that it was too much, but it was, and now I'm fatigued and can't do a whole lot else. Alas.

[pingpongman]

Took me a while to learn this. Yesterday I did yard work, today nothing but laying around.
MIKE

[waterwillow]

Originally Posted by pingpongman

Took me a while to learn this. Yesterday I did yard work, today nothing but laying around.
MIKE

Like it,"PING PONG MAN", so fits with how life is, up and down, back and forth. Think I am starting to feel a bit cracked. lol