I called the dermatologist’s office for an appointment and they said to come in this afternoon. There’s a special emergency clinic on Fridays. That was actually fun! I did not get to see my actual dermatologist. I LOVE him. He’s the only doc that cares about my rheumatological symptoms. Turns out the 2 women I saw today were much the same.
First I got a guy nurse who was very nice, then a newbie doc who did the initial exam. She wanted to see my pictures in my medical file on my computer. She was smart! I showed her the pics, and she immediately rattled off each condition….erythromelalgia, angioedema, lipodermatosclerosis, myasthenia gravis, geographic tongue, lupus and even mixed connective tissue disease! My jaw was on the floor. She was even interested in my humongous hernia and the operation that caused it. Yup…..that’s a pretty serious skin problem….see how far it can stretch before I pop.
Then she brought in the doc who heads the clinic. They said the swollen, rough skinned spot on my face is angioedema. I did not believe them at first. I have had angioedema for decades…but it was always swollen eyelids, hugely swollen lips, swollen face….stuff like that. And every time I ever had angioedema before, it was bilateral and symetrical. This is a strange shape, only on the right side.
Apparently this is what happens after hives just aren’t dramatic enough. This sort of angioedema is basically hives that go deep into the skin. Huh. Who knew? So this giant hive has been getting deeper and bigger on my face 😦 I take generic Zyrtec already. Now they want me to take 4 pills per day. Yikes! If I get worse, I am supposed to quick make an appointment with my usual dermatologist.
I just went to look up my usual dermatologist’s bio. No wonder he worries so much about my rheumatological/autoimmune issues.
***, MD, Professor of Dermatology has specialized expertise in the diagnosis and treatment of skin changes that occur in autoimmune rheumatic (arthritic) diseases like lupus, dermatomyositis, scleroderma, and vasculitis. He is Board certified in Internal Medicine, Dermatology and Dermatologic Immunology, and Diagnostic Laboratory Immunology. Dr. ***’s main focus is patient care, education, and patient-oriented translational clinical research.
Dr. *** is recognized internationally for his clinical expertise and research accomplishments relating to the skin problems experienced by lupus and dermatomyositis patients. He has been listed in Best Doctors of America and America’s Top Doctors and has been elected to several prestigious medical and scientific research societies including the American Society of Clinical Investigation and Association of American Physicians.
I think each time I read his bio, I am impressed all over again. Why can’t he be my everything doc? I like him better than most 🙂 The 2 women docs today were also great.
Look familiar? This is what angioedema does to hands. Looks like my hands lately.
Guess what a treatment for this sort of angioedema is? IVIg. For the zillionth time….if I was getting regular IVIg, I would not be having all these obnoxious problems! All docs but the idiot Utah neuros think I should be getting IVIg every 3 to 4 weeks. I miss my Vermont neuro!
I am wiped out tired from going up to the hospital and back. Everything hurts. I was too tired to take pics. Wish I could have. Almost every tree has leaves and/or flowers right now. Today felt like the first day of summer. It was 84 degrees at my nearest WeatherBug station. I was hot and sweaty out there. Whew!
Sooooo tired……
Wendy The Wanderer 
I accidentally pressed publish before I added pics. Reload the blog page to see the pics.
Wendy:
If your doctor who is treating your angioedema says that IVIG is the treatment for that condition, couldn’t he then prescribe it for you and then the damn Neuro doc wouldn’t be able to stop it… because it was for something outside his specially?
It seems that might be a perfect way for you to get what you need!
PipeTobacco
Basically Utah does not want to spend money in IVIg….not for CIDP, not for MG, not for angioedema…not for any of my neurological or rheumatological….or ANY health issues. More and more, states are refusing to treat people on Medicaid. The number of states refusing will soon be bigger than the ones paying. One thing I have going for me is that in a few years I will be eligible for Medicare. But that’s no picnic, either. I either need to be wealthy or we need universal health care. Since the Utah judge has ruled it is not in the taxpayer’s interest to give me IVIg, it’s just not going to happen. Many of my docs tried to find a way to get me covered. Nope.
Is there a chance that you could get IVIg successfully prescribed for this condition even though you haven’t been able to get it for the MG? Your body wouldn’t care which condition the bureaucracy considered the compelling one, it would just be glad to get it…
I wish! As long as I still have the same insurance company and am in the same hospital system, in Utah…..nope. IVIg is the treatment for a few of my conditions. Sigh….
Medicare should be an improvement but it may not help you get IVIG. Remember that they wouldn;t even let me try it. I got so disgusted with what the doctors are telling me about what I need to do about my back that I put in a google scholar search on Modic changes and put up a FB page on the research. There are treatment centers in Denmark, U.K. and Australia for people who have Modic changes, I guess I was born in the wrong place.
Now I am supposed to get a series of steriod shots in my back, so you know, I researched it and the studies concludes that they usually don’t help. It did for my shoulder but the ones for my back didn’t. So why do I have to have them? it is the custom!!!
Four Zyrtec pills a day! I am taking 2 Extra Strength Tylenol before going to sleep currently. Are we the only ones who worry about taking too many meds? I haven’t figured out how many pills 3,000 mg equals yet but that is what he said that I could take.
Most women I know who are on Medicare and need IVIg for MG, get it. For poor folks like me, Medicaid remains the supplemental insurance. I get switched to Medicare at 65….5 more years….if I live that long.
I loathe Tylenol. Makes me instantly feel worse. Love ibuprofen 🙂 And steroid shots? Hate them, too. I hate most pharmaceuticals. Love, love, love IVIg!!!!
I have been on disability for about 18 months. I turn 60 in June. Last month I received info that I was going on Medicare at my 60th birthday. Are you sure you’re not eligible for Medicare?
You are probably in SSDI. I was disabled young, so am on SSI. SSDI comes with Medicare after a 2 year wait. SSI gets Medicaid.
Those on Medicare who got IVIG, were they seropositive? Just curious. Tomorrow I will call my Rheumy and tell him that I found a Pain Management Specialist in Plano who is board certified and see if he approves of him/ If he does, I will be on my way to getting the steroid shots that will get paid for by Medicate and will probably not help. Sigh!
I think both seropositive and negative. I did not used to have problems eventually getting IVIg on Medicaid. There is one support group specifically for seronegative MG. I think about pain management often. Some people here are medicated out of their minds to avoid pain. I tend to go the other way and endure as much as possible. I wish there was something in the middle that was safe and symptom free 🙂