micheller Posted May 20, 2012 Report Share Posted May 20, 2012 I've been reading up on this and my symptoms do fit. I called my neuro to see if I can be tested for it. I get a few things that I'm not sure if it's a symptom of mast. I get these lumps on my fingers, usually on the knuckles closest to my nail, takes up half my knuckle. They do hurt more in my joint if I press on them. They are red and go away after a while. I was getting them so often that I went to my PCP (before pots dx) and she had no clue what they were and gave me antifungal cream. When I get these lumps, I also get red dots on my toes that itch/hurt. These look more like bug bites but are not. Like I said, I've had these for a while but blew them off until I read the symptoms for mast. I have a lot of skin sensitivities including the sun, hair, cardboard is a big one. Does anyone get the lumps? Does this sound like mast? Quote Link to comment Share on other sites More sharing options...
Maiysa Posted May 20, 2012 Report Share Posted May 20, 2012 Sorry MIchelle, I get tiny itchy bumps just once in a while on my toes, and they go away very quickly. And it's maybe every few years. I just thought maybe it was allergies or something. But I suppose it could be possible that it's mast cell, but lots of people have these skin issues, but not sure that it strictly means they have mast cell since itchy bumps could mean a lot of things. But..... I have noticed that it seems that if anyone has POTS anymore, it's almost like mast cell is the contributing factor. Do you have other symptoms of mast cell as well? Also, have you been tested for rheumatoid arthritis? Or have you had an RF test? But not sure rheumatoid itches. But the knuckle made me wonder. I used to get lumps, but it was erythema nodosum and was told it was because I had an infection in my lungs. But now that I look back I wonder if the mast cell was causing the erythema nodosum nodules. They itched like I had never itched before too. I wish I could put a picture up to see if this is what you have. But have not figured how to do that. Okay, good luck to you!!Maiysa Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 21, 2012 Report Share Posted May 21, 2012 I get bumps on my finges at the joints. They look kind of similar to a hive and they often will have a little red dot in the middle of the bump that looks like its is a couple of layers down in the skin but they aren't hives...they are harder to the touch than a hive and they don't hurt unless I run my finger nail over them, then they pinch. I have also gotten these bumps on my toes and on my elbows. I showed them to docs for years with no real response from them. My current immunologist said he wanted to get one biopsied. Sure enough, when one came up about 2 months ago, I had it biopsied and the pathologist was concerned enough to actually call the dermatolgist that did the biopsy to ensure I was being evaluated for autoimmune and inflammatory disease. The official pathology report says that the tissue sample is clearly indicative of inflammatory connective tissue disease but not developed enough to identify which disease specically. It also stated that some vascular change in the sample may indicate the beginning of a Gottron's papule (associated with dermatomyositis) but again the sample was not developed enough very verification. If you google "Images of Gottron's papules", that is what my bumps look like. I currently only get one or two at a time, but, there were times when I was younger that I woud get them all over my fingers at the joints and along the sides like in the pictures on google. I was glad I finally had the biopsy because it gave more laboratory evidence that I do have inflammatory connective tissue disease (all the usual tests like ANA, SSA, CRP always come up negative.) I started getting these bumps as a teenager when I had a viral infection that caused a rash all over my body. The docs didn't know what virus I had and also said they thought the finger bumps were just some sort of immune reaction to the virus. It kind of makes me angry that it wasn't taken more seriously then, but, then I think about how much they didn't know about immunology/rheumatology back then and try to forgive. The biopsy only took a minute and I was given a local anesthetic by injection at the biopsy site...it wasn't a big deal but gave us good info. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 21, 2012 Report Share Posted May 21, 2012 Michelle, where do you live? Finding a doctor familiar with mast cell diseases other than mastocytosis can be a huge challenge. Hopefully yours can check for mastocytosis. After that you might have to involve a mast cell disease expert like those in Boston. I get all kinds of wacky rashes Quote Link to comment Share on other sites More sharing options...
micheller Posted May 21, 2012 Author Report Share Posted May 21, 2012 Katybug, that's what the ones on my fingers look like! At least I can give them a name now. Do yours make your joint hurt on the underside too? The ones on my toes are different, just red dots but feel the same if I press on them. They aren't only on my joints. Very interesting. I don't have any specialists besides a neuro and gastro. My neuro wants to send me to a hematologist for my extremely low iron and blood count. I'm still in the testing phase so been researching a few things myself. I will have to see if she will refer me to someone.Ana, I live in Wisconsin. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 21, 2012 Report Share Posted May 21, 2012 micheller,My joints hurt all the time so I don't notice a difference. I do have some soreness when I move my fingers with the bumps that feels associated with the inflammation of the skin at/around the bumps. Maybe your docs have a dermatologist friend that they can call for you to get you in for a biopsy of one of the bumps? That's what my immuno had to do since most dermos don't take "emergency appts." You are only the second person I've found to have bumps like these (the other used to me on here but haven't seen a post from her in a long time.) So, if you find out more about your bumps please let me know and I'll do the same. I think these bumps might one day help them give me a definitive dx. Katie Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted May 22, 2012 Report Share Posted May 22, 2012 Michelle,I see Dr Barboi and Mary, his NP for my autonomic neuropathy at Froedtert/Medical College of WI. He recognized my rashes, hives, and blotching and sent me for a skin biopsy and tryptase. I've seen Dr Linda Lee in Dermatology, and she is willing to serve as my local physician and follow Dr Afrin's recommendations. I see her again next week. She is the first MD I've found in Wisconsin who is familiar and comfortable with mast cells. She wrote her PhD disertation was on mast cells and impact of histamine. You may want to consider having Dr Lee look at your rashes. Lyn Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 22, 2012 Report Share Posted May 22, 2012 That would be great if you could see one of Lyn's docs as a first step so they could rule some things out. Or if you have an open minded doc you could ask them to investigate you for mast cell disease and see how they respond. There are lots of good articles they could review. If they were to contact a mast cell disease expert, many of them are kind and willing to help other docs remotely. Then if necessary you could travel to one of them if you're well enough!Big things would be to check your serum tryptase, IgE, could do urine N methylhistamine and prostaglandin---though if these tests are not handled properly the results can be false. Also ruling out phreochromocytoma and carcinoid is usually necessary. If you're tryptase is high, they might need to do a bone marrow biopsy. If you have skin lesions would be good to have a mast cell doc look at them to see if it fits with anything, needs more investigation, or could save you other testingDr Afrin that Lyn has seen is a hematologist and has a wonderful reputation. If you could see either an allergist or hematologist familiar with mast cell disease or willing to liaise that would be greatHave you ever noticed other triggers like stress, food, drugs, smells? Some people trying to sort things out try a low histamine diet. I'm currently trying one. Have you ever taken an antihistamine to see if it would help? The first line treatment for mast cell disease is antihistamines that block the H1 receptor, H2 blockers like zantac, and mast cell stabilizerssorry if I'm repeating myself; can't recall what I posted before Quote Link to comment Share on other sites More sharing options...
micheller Posted May 22, 2012 Author Report Share Posted May 22, 2012 I talked to my neuro yesterday. She is referring me to a hematologist because I have horribly low iron and a low blood count. She told me to ask them about mast cell testing. I haven't noticed any triggers. They just kind of pop up. I will have to check out the low histamine diet, didn't know there was such a thing! I take Claritin in the spring and summer for normal allergies and omeprazole for reflux. Lyn, I'm trying to stay away from Froedtert, not because of the drs but it's 2 hours away and hard for me to get there. If I can't find a local dr that is knowledgeable with mast, I will contact Dr. Lee. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 22, 2012 Report Share Posted May 22, 2012 check out the mastocytosis society websitehttp://www.tmsforacure.org/medical_board.php for a doc listthough if you don't have run of the mill mastocytosis then not all listed are that helpful and Boston or SC are the way to go at the present timegood luck and keep us posted Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.