Annie, thanks for your response. At the ER they did no blood tests at all, so no to all the last part. I tried and the benedryl helped with the itching but its also PAINFUL, to the touch and little hot. and very painful if i hit it.

Im supposed to go to the dermatologist for an appointment tomorrow at 3, but my aunt and uncle have appointments as well as work and need me to babysit?

I think i need to go.



I

Painful makes me think of the herpes virus. Did you have chicken pox? Have you been around anyone who could have it? I had a rash once that itched so bad I wanted to rip my skin off. The dermatologist said it was one of the 3 dozen or so variants of the herpes virus. So maybe it could be that. Sarna lotion helps a bit. Ask the derm. about that. I think you should go in. Can't anyone else babysit?!!! Friends, family? There must be someone, like a day care, that can handle them for a couple of hours. If not, call the dermatologist and see if they can work around YOUR schedule!!!

Or maybe Teresa is right and it's dermatitis herpetiformis. Ask them to think about that too.

Ask lots of questions, if you get in. Like would an anti-viral help. They have to figure out what this is. Your MG could get worse if they can't. I hope you can get in and that they figure all this out!

Annie

Tyler, tell your Aunt and Uncle that they need to find another babysitter - MG is nothing to mess around with, especially since you are so young. They NEED to understand that!!!! Just remind them that if you get worse because you aren't getting treatment that you might not be available to babysit in the future, because you might be in the hospital, suffering an MG crisis.....

Dermatitis Herpetiformis doesn't generally hurt, but the lesions can be kind of painful once the pustule has burst. Go ahead and ask the dermatologist to test for it, while they are at it. I will tell you that if you have DH, most antibiotics won't help AT ALL. Lotions won't help get rid of the lesions, either (although it may help the itching), because the cause of the rash is an internal reaction to gluten (it isn't a true allergy, but it helps to think of it that way....). The only "cure" in that case is eliminating gluten from the diet.

If you do have DH, there is a medication (Dapsone) that is sometimes prescribed. It is a specialized antibiotic, but the side effects are similar to the symptoms of MG, and long-term use can adversely affect your red blood cells and hemoglobin. Chances are that you don't want to take this particular medication, as it will probably make your MG worse.

I know that it can seem hard to go on a GF diet, but trust me, it isn't nearly as hard as most people - doctors included - make it out to be. If you are in North Carolina, you are in luck - Whole Foods Market has their very own GF bakery in Durham, and there is an excellent Celiac Disease Center at Duke University (they even have a GF restaurant on site!). The Mellow Mushroom restaurants in Raleigh, Durham, and Burlington rolled out their GF pizza crusts in April - I was in the area visiting my Grandmother at the end of April, and was thrilled to find that their GF pizza was very yummy! Raleigh has a large GIG (Gluten Intolerance Group) chapter, and they will be more than happy to help you learn how to navigate a GF lifestyle.

If you are close to Raleigh/Durham, you might want to contact the CD Center there for recommendations for dermatologists who know how to test for DH. In any event, if you aren't already on a GF diet, I would HIGHLY recommend it. I have been on a GF diet for the past 2 years, and I just got my MG diagnosis a couple of months ago. My neurologist thinks that my being on that GF diet may have helped to make my MG symptoms much milder than they would have been otherwise.

Two thoughts from your comments - first, like someone else said, you need to keep your appointment and figure out what's going on. Someone else can babysit.

The second thought was prompted by your comment that the rash is painful - did anyone consider shingles? I had shingles the summer before my freshman year in high school, and it was a red bumpy rash that was INCREDIBLY painful. Just something to consider...

i was thinking shingles too? my husband got it several months ago. It was extremely painful for him. Im sorry you are having so much trouble! hoping for the best!

Dont you all think I WANT to go to the doctors? I had to cancel my appointment because of my aunt and uncle. The ER told me i had to make an appointment to be seen the day after. They dont have another appointment open till next week. My aunts commitment is important, yet my uncles could be avoided. My aunt has lyme disease and still is trying to get treated. Yet she moved her appointment from 11 to 3, where mine was at 4:30, for no reason so i could have gone. But oh well.

Thanks for all your thoughts everyone!

I booked an appt. for tomorrow at 3.

Hopefully thatll work.

Can a dermatologist test for CD?

What should i have them do?

I'm so sick. I'm tired, my stomach hurts any sleep I get doesn't help i wake up just as tired. I still have to babysit today, im so tired and my breathing is a little compromised. I'm very frustrated and want to get away.

I too thought of shingles, but it would seem that they would have known it was that when he went to the Er. At least I hope they would.
Shingles are horrible! I've had them a couple times. Horrible.
Myrsa can also cause pain, and a rash like that, this is why I wondered if this is what they were thinking when they said skin infection.
Please let us know Tyson, either way, you could wash with a disinfectant you can get over the counter at a drug store. For the life of me the name has slipped my mind. Ask the pharm. he should know.
If I remember the name, I'll let you know. sorry.
Best wishes for tomorrow.
Love Lizzie

Tyler, a dermatologist can test for Dermatitis Herpetiformis - that particular test has a spotty record for "catching" DH, but it's worth a shot. The test for CD is a blood test, and I don't know if a dermatologist can do that or not.

The fact that your stomach hurts as well might also indicate CD. As I said on another post, CD can be "triggered" by a trauma/stressful event. In that case, it will come on like gangbusters.....

A Celiac diagnosis is straightforward IF your blood test and/or skin test comes back positive for antibodies. Unfortunately, sometimes neither test will come back positive, EVEN THOUGH you do, in fact, have Celiac Disease (sound familiar?). As I said before, some people are gluten SENSITIVE (and will never test positive for CD) - my husband is one of those people. Even though these folks don't have CD, they still feel much better on a Gluten-Free diet - and chances are that they have some level of damage to their intestinal lining; it just doesn't show up on any tests.

One of the things that I noticed when I went on a GF diet is that I had SO much more energy. That's why it was so frustrating to me to start feeling tired again a couple of years later, before I knew that I had MG. I shudder to think how tired I would be if I hadn't already been on a GF diet!

When I completely eliminated gluten from my diet, my energy level shot up within 24 hours. I don't know how much it might help in your case, but it is worth giving a GF diet a try. Just BE SURE to get tested BEFORE you eliminate gluten from your diet; otherwise, you could skew the results of the test.

Good luck, sweetie - I hope that you get some answers real soon; it's awful to feel bad and not know why!