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Is it Raynaud's or something else?

Posted by letapumamatt @letapumamatt, Jan 30 11:03pm

Hi all,

So, since last April I have a multitude of odd symptoms ranging from neuropathy (around head/top of feet), extremely loud tinnitus (left ear only), some dizziness/double vision, and most prominently, erythema (flushing) of the hands (usually) or ears (occasionally).

So, the flushing definitely occurs with a rise in temperature, but it only takes a small increase. Much of the time at room temperature, I've got one of two situations: very pale fingers with loose skin, or pale fingers except for pruney, reddened fingertips and tight skin. When the flushing occurs, it covers the entire front of my hands, and just the fingers up to the knuckles on the back of both hands.

It's definitely circulation related, also. If I run my hands under very warm water for 10-15 seconds, they will turn red- but then if I raise them up above neck level, they go back to a normal color after about 2-3 seconds. If I drop them back down to my side, they go red again.

So far, I've seen my PCP, a neurologist, an endocrinologist, and an otolaryngologist. Nobody has even offered a hint as to what's going on. I've tested negative for antibodies/proteins associated with scleroderma, MS, lupus, and RA. All my other bloodwork is normal so far. Having an ultrasound (for peripheral artery disease) next week and an EMG in March.

The only condition I can find that's even remotely similar is Raynaud's, but this seems quite different. Just curious if anyone has heard/seen anything like this, or has any ideas. Will attach pictures if it will help. Thank you!

Matt

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 31 7:16am

Hi Matt, I'm not a medical professional but the hands changing color does seem like a good clue to what's going on. Mayo Clinic has some information on diagnosis and treatment of Raynaud's here that might help - https://www.mayoclinic.org/diseases-conditions/raynauds-disease/diagnosis-treatment/drc-20363572.

You mentioned it seems to be circulation related. Acrocyanosis is another condition that sounds similar - https://my.clevelandclinic.org/health/diseases/acrocyanosis.

It sounds like you have seen a lot of specialists trying to figure out what is going on. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

REPLY
letapumamatt | @letapumamatt | Jan 31 11:51am

Hi John,

Thank you for the reply! So, as to Raynaud's, I tested negative on the ANA test. I haven't yet done the erythrocyte sedimentation rate. Will ask my PCP about it. As mentioned, I've never seen anyone with Raynaud's describe their symptoms as anything similar to mine other than the changing color with temperature.

As for acrocyanosis, I've definitely considered that, especially with my feet- and that's why I'm having the ultrasound done. The only thing that I haven't done on the "diagnosis" section is a skin biopsy, which I've requested through my PCP already.

As for seeking help at a teaching hospital.... most of my specialists have been OHSU-affiliated, so I *think* that's already happening. That being said, I'd be open to anyone/anything at this point- the more contact, the better. The only problem may be- which specialty does this even fall under? My PCP is putting in referrals for dermatology, rheumatology, and immunology, but those appointments will likely be several months away.

Thank you very much for those links - I'm a researcher by profession, but am trying not to overdo it and worsen any anxiety. Both those pages were clear, concise, and quite useful. Thank you!

Matt

REPLY
1 reply
leeannsu42 | @leeannsu42 | Feb 4 3:25pm
In reply to @letapumamatt "Hi John, Thank you for the reply! So, as to Raynaud's, I tested negative on the..." + (show)
@letapumamatt

Hi John,

Thank you for the reply! So, as to Raynaud's, I tested negative on the ANA test. I haven't yet done the erythrocyte sedimentation rate. Will ask my PCP about it. As mentioned, I've never seen anyone with Raynaud's describe their symptoms as anything similar to mine other than the changing color with temperature.

As for acrocyanosis, I've definitely considered that, especially with my feet- and that's why I'm having the ultrasound done. The only thing that I haven't done on the "diagnosis" section is a skin biopsy, which I've requested through my PCP already.

As for seeking help at a teaching hospital.... most of my specialists have been OHSU-affiliated, so I *think* that's already happening. That being said, I'd be open to anyone/anything at this point- the more contact, the better. The only problem may be- which specialty does this even fall under? My PCP is putting in referrals for dermatology, rheumatology, and immunology, but those appointments will likely be several months away.

Thank you very much for those links - I'm a researcher by profession, but am trying not to overdo it and worsen any anxiety. Both those pages were clear, concise, and quite useful. Thank you!

Matt

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Hi letapumamatt
I have Raynaud's Disease in my toes; quite painful in cold months. I am curious about your mention of the ANA test; what is that? I am an 82 yo female and my disease got active late in life. MD tried a low dose blood pressure medicine, and another MD prescribed a topical compound medicine. Neither did any good. My blood pressure is too good to go full blown on blood pressure meds. My toes and half way into my foot can turn deep red, dark gray, and at times black. What are some of the things you do to help your Raynaud's

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