My GP gave me a referral to a dermatologist, hopefully he will biopsy it. The rheumatologist did not seem too concerned and called the rash on my arms and legs Livedo reticularis ( a symptom of numerous autoimmune diseases and not a problem in itself).

Interesting article on the lesions. My B12 is good. I am concerned about them and will show the results to my new neuro on Wednesday.

They did the endomysial or tissue transglutaminase and both were negative. On the gastric follow through, normal transit time is 4-6 hours. They warned me I would be there all day, and would take pictures of the barium swallow every half hour. It was all over before the first picture and cited the transit time at 15 minutes

As far as Lupus, I meet the Lupus criteria with 5 of the 11 even though my ANA is negative. No one ever gave the Lupus diagnosis.

I have all the MG symptoms - droppy eye, droopy smile, droopy face, muscle weakness, fatique after a few steps, breathing issues particularly on exhale, have to bathe in a chair, exhaustian, sleep 12 or more hours, slurred words, difficulty swallowing, falls. I have other symptoms too that do not fit, diarrhea (good week <10 bouts, bad week 50+), rashes, fever, sweats, pain everywhere (muscle, joints, tendons), numbness, tingling, tinnitus. I think the only part of my body that still works correctly is my heart, liver and kidneys.

Walking is getting harder and harder, I think I need a wheel chair. I went to pick up the MRI at the hospital today. I walked in with the usual penguin waddle and I walked out with a very slow Frankenstein walk. The legs were to weak to bend at the knee.

Last time the IVIG made all the pain go away. The last round, it only subsided for a couple weeks. The pain is becoming a real issue, even simple task like using a stapler cause tremendous pain. I had to trade in my mouse for the computer at work and get a track ball, because the mouse was causing terrible arm pain.

I am leaving it up to John Hopkins to figure out. I just hope I do not lose my MG diagnosis and am left with "we are not sure", because I think I am very near disability status.

Sorry to burden you, you are always so supportive and concerned
thanks
kathie

Good grief, Kathie, how is anyone a burden?!! :hug:

So what you have is not a "rash" per se, but a vascular sign. I always like the derm sites the best when putting skin symptoms together.

http://dermnetnz.org/vascular/livedo-reticularis.html

Do you take B12? Some people, especially those with GI problems, cannot absorb B12 through the intestines. Instead, taking sublingual methylcobalamin—which absorbs into the bloodstream right away like nitroglycerin—is the best alternative. And as Rose (former forum member) used to say, what is in a blood test is not necessarily indicative of what is getting to your tissues!

If you want to try it, you can get it at Amazon or iherb. Jarrow brand is what I use daily. And we need it to make acetylcholine anyway!

I hate walking very far, because the recovery time is so much longer. That's a great way to put it—like Frankenstein! I literally can't move after an outing like that.

Kathie, living with MG is something I've never completely adjusted to. It's so relentless and such a cruel reminder of how powerless I am over it. And what makes it, and other health problems, so beyond difficult is when doctors begin to doubt the disease. Or you. I frankly think it should be illegal to bring any psycho mumbo jumbo into the doctor-patient relationship.

It's so obvious that you have MG. Sure, there might be something else going on, but that doesn't mean the original diagnosis was wrong.

Do you know what your vitamin D level is? Recent studies show that a deficiency of it might CAUSE AIs! I have no idea how long I was deficient before it was diagnosed.

I wish I could've kept working. I think giving it up is one of the hardest things I've ever done. I still wish I could work, 16 years later! I hope you don't have to give it up. Talk to your neuro about a motorized scooter. They have new ones now that are lighter and easier to tote around.

The diarrhea could be caused by the Cellcept. That's pretty common. And they do cause "achiness" and other symptoms like that due to suppressing the immune system. So some of your symptoms could be from the drug. Also, night sweats could be a symptom of an occult infection. Geez, there's so much that could go wrong on these drugs!!!

I'm sure you and your docs can figure all of this out and put all of the clues together in a way that makes sense. Maybe you could put symptoms into categories before the JH appt. Put the MG ones in one list, the possible Cellcept side effects in another, etc.

I wish magic wands really worked!!!

Annie

Hi,
There is a really good website that explains what Annie says about the B12 blood tests not being all they are cracked up to be. Its address is
www.b12d.org its a British charity for those with PA and B12 deficiency and has a wealth of information on it.

I hope that helps.

Rach x

Neuro does not think it is MS, because the foci are not in the usual place. Neuro does not think my flare is MG but another autoimmune issue. Iam so tired of hearing that, I wish they would identify "that other autoimmune disease".

She did see the rashes, ordered more blood work and up my prednisone to 20 per day. I am still feeling bad but not as bad as a few days ago.

I am not looking forward to the weaning back down again.

kathie

never mind Just saw it's over a year old