Nicky, I'm sure you've already done the research. If you have hemochromatosis, it's doing damage to your body NOW. You need to go get tested. Please don't wait.

http://www.labtestsonline.org/unders...mochrom-3.html

http://www.cdc.gov/ncbddd/hemochromatosis/faq.htm

And you know what other disease Scot's and other Northern Europeans tend to have . . .

Annie

Nicky, good news: your value of 16 for eye pressure is normal!
I initially had ptosis and DV but that went away after 2 months with the Pred treatment.
Yes, it is highly disappointing to have to go up again with Pred. I went into a relapse when I tried to go from 5mg/d to 4 combined to a vaccine shot last September.
Since then, I learned several things: forget shots when you have MG, never taper more than 10 % Pred at any one step and the last one: if you manage to go down to 5 mg/d, consider staying with that dosage, as it is about the natural cortisone production for my weight (75 kg).
What my neuro says is that MG doesn't affect the eye muscles which control focusing and sharpness (crystalline muscles?) but some people mention " blurry vision" which makes me believe she is wrong...
I had a problem after my first eye surgery, it is called "secondary cataract".
When they change the crystalline for an implant, they keep the envelope which is around the crystalline and there is a probability of 50% that, within 5 years, that envelope get clouded. The treatment is quick, effective and simple: Yag laser shots (around 15 in my case) lasting for a total of less than 2 minutes.
Maurice.

Nicky,
I am glad you decided to take the pred and it was not stupid! I totally understand how desperate we can get to get off this stuff. I LOVE the saying about pred being like a credit card. I have never seen that before but it couldn't be more accurate.

Yes I am completely off the cellcept. I am definitely feeling better since stopping it. It only took a few days before I started feeling like my head was coming out of the fog I had been in. I still have times where I feel pretty foggy headed but there is definite improvement. The MG is going pretty well. I am feeling alot better, still have to make sure I don't overdo it on my good days but I have upped my vitamin intake and started eating mostly fruits, veggies, nuts, fish and rice and it has made a world of difference.

Nicky as for the lump in your breast. Try not to worry even though I know that is sooo hard. I had a lump removed when I was 18 that was benign and had another taken out that my Gynecologist found during my yearly exam. When they went to biopsy it it literally started disentegrating. It was a cyst that ruptured during the biopsy. Is the spot sore or tender? My first one was but my 2nd wasn't. Please let us know how that turns out ok?
Kendra

Annie,

I know...My aunt keeps reminding me to make sure I get tested...She keeps sending me emails with copies of her results with little notes from her doctor saying that everyone in the family needs to get tested....On Tuesday, I'm going to see my doctor and talk to him about this...

The Celiac's is always at the back of my mind...I will get the testing at some point...It's just that I had a colonoscopy + duodenoscopy before, and everything looked great apparently...but I never did have the antibody testing....*sigh* I will get it done, though...It's always been a concern...I think I just don't want to give up wheat...It's so delicious, and it's in everything!

Neutro,

Yes, I was so relieved when the pressure turned out normal...*Phew*

That's one of the first things my neuro. told me- never, ever have immunizations from this day forward....She's said that she's had many patients who've had to be hospitalized because of them...She just doesn't want to risk it...The immunizations include the dead ones...

Tom posted something on the thread that Jana had made for you and I agree with him...I think MG does cause blurring...That was one of my problems for ages, but because 'blurring' wasn't considered an MG problem, I figured it was from something else...

I hope that you get well very soon, and don't have to take this prednisone anymore...It's so unpleasant, but I understand that it can be the better of two evils...

Kendra,

Thank God you're feeling back to yourself...I was so afraid for you when I was reading about the cognitive problems...That's excellent that the MG's doing well, even though you've removed this treatment...i think that is excellent news...No more having to worry about the other side-effects which would come later...That's a major load off!

I'm not too worried about the lump. I feel almost 100% sure it's just the fibroadenoma...I noticed it changed shape like the day after my thymectomy, so maybe when they were doing the operation, it got sorta flattened? lol...That's what it feels like....Just feels flatter than before...If the procedure isn't too invasive, I'm gonna have it taken out...Otherwise, if I feel certain that it's nothing, I'll just leave it...

It's definately not sore...It's just very hard, and very close to the surface of my skin...It's not one of those ones that you 'lose,' where it moves around a lot. It can be moved, but it's pretty 'rooted' in its spot, and I know precisely where it is all the time, and have no trouble finding it.

Thank you, guys, for the support! I really appreciate it!


Nicky