kbutton Posted November 3, 2021 Share Posted November 3, 2021 7 minutes ago, WildflowerMom said: I think it’s considered migratory vasculitis, meaning it’s in both arms instead of one. Vasculitis is almost a symptom as much as a diagnosis, though it can be a singular occurence: https://www.arthritis.org/diseases/vasculitis 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 3, 2021 Author Share Posted November 3, 2021 At the risk of getting on yalls nerves, I have one more question to ask…. So I’m digging, trying to solve this myself since I still don’t have a rheumatologist appt. BUT!! I think it’s possible I’m on to something! About 1.5 weeks before first arm vein swell up, I got a steroid shot in the bursa of that arm. I went to ER, then followed up with my GP. At that follow-up (original arm seemed to be healing fine), I got the flu vax. Within 3 days, the veins of the arm that I got the flu shot in was doing the same thing as the original arm. So could this be serum sickness? Any thoughts? 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 3, 2021 Share Posted November 3, 2021 My friend that has DM previously had very bad reactions to flu shots--fever, body aches, etc. I don't know if she would get rashes. The DM came up just before she was planning to see an immunologist anyway because her flu shot reactions made her leery of getting (but she wanted to get) the Covid vaccine. I am really a one hit wonder on this, lol! On 10/29/2021 at 12:11 PM, WildflowerMom said: Of course, it could be nothing. That’s what always seems to happen to me. I feel like crap, blood work shows nothing, and nothing really happens. Have you had AI workups in the past? Do you tend to have AI-like issues that don't show up? If so, I would tend to think this is an AI that will encompass the other symptoms, including vasculitis or phlebitis. Multiple people I know that finally got an AI diagnosis have symptoms resolve that they were checked for twenty years ago with negative results after getting properly diagnosed and treated. I have a friend with lupus that tested negative for it as a young woman. When she was finally diagnosed a couple of decades later, her lupus flares were...drumroll...just like the "flares" she had when she was initially assessed but supposedly didn't have it. These things unfold in layers over time. Sure, it could be the shots. But I would not let this go without a thorough assessment, honestly! 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 3, 2021 Author Share Posted November 3, 2021 Just now, kbutton said: My friend that has DM previously had very bad reactions to flu shots--fever, body aches, etc. I don't know if she would get rashes. The DM came up just before she was planning to see an immunologist anyway because her flu shot reactions made her leery of getting (but she wanted to get) the Covid vaccine. I am really a one hit wonder on this, lol! Have you had AI workups in the past? Do you tend to have AI-like issues that don't show up? If so, I would tend to think this is an AI that will encompass the other symptoms, including vasculitis or phlebitis. Multiple people I know that finally got an AI diagnosis have symptoms resolve that they were checked for twenty years ago with negative results after getting properly diagnosed and treated. I have a friend with lupus that tested negative for it as a young woman. When she was finally diagnosed a couple of decades later, her lupus flares were...drumroll...just like the "flares" she had when she was initially assessed but supposedly didn't have it. These things unfold in layers over time. Sure, it could be the shots. But I would not let this go without a thorough assessment, honestly! Your dermatomyositis is still on my short list. It really does fit on several levels. yes, I was dx'd with CFS at 16 or so. Fibro in my 20's. Interstitial Cystitis in my 30's. So yes, definitely familiar with the AI side, unfortunately. I just came across this serum thing and thought, maybe that's an easy dx? Idk. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 3, 2021 Share Posted November 3, 2021 2 minutes ago, WildflowerMom said: yes, I was dx'd with CFS at 16 or so. Fibro in my 20's. Interstitial Cystitis in my 30's. So yes, definitely familiar with the AI side, unfortunately. Ah, I thought your earlier statements were that you present that way but don't get diagnosed with anything, which often happens before getting diagnosed with something. That's not a fun laundry list! 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 3, 2021 Share Posted November 3, 2021 6 minutes ago, WildflowerMom said: Your dermatomyositis is still on my short list. It really does fit on several levels. This or lupus or a tick based disease are my short list, fwiw. It will all depend on what your antibodies tests look like. 1 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 3, 2021 Author Share Posted November 3, 2021 11 minutes ago, kbutton said: Ah, I thought your earlier statements were that you present that way but don't get diagnosed with anything, which often happens before getting diagnosed with something. That's not a fun laundry list! Well, everything I'm dx'd with is kind of a 'rule out' of everything else. I just wish something concrete would show up. But such is life. 🤷🏻♀️ 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted November 3, 2021 Share Posted November 3, 2021 dermatomyositis is pretty rare, but I have a family member with it. She was pretty sick for a while. She went on high doses of prednisone and something else and went into remission. It hasn’t come back. 1 1 Quote Link to comment Share on other sites More sharing options...
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