Is it Raynaud's or something else?

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?

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

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

Hi Matt,
I think you might have erythromelagia, which, like Raynauds phenomenon can be primary or secondary (connective tissue disease and some blood disorders). Where Raynauds is caused by constriction of blood vessels, erythromelagia occurs due to dilation of the vessels. Like you, I experienced it in my hands and ears and had to stop using a hair dryer.
The erythromelagia has since given way to Raynauds, I guess blood vessels have to eventually pick a side.

There is a screening test for autonomic nervous system disorders.
You can find a self administered questionnaire online.
It is called COMPASS-31 screening tool. If you have a lot of the symptoms
it covers you could ask your neurologist if the results are helpful.
Do you have a BP measurement device at home you could check
lying down first and then after standing.?

@leeannsu42 I have a real problem with my toes and fingertips in the winter. My husband bought a pair of winter hiking socks which have been real life (toe) savers. I’m wearing my purple ones now! I’ll see if I can find the name of them or the manufacturer and leave you a note tomorrow.

@becsbuddy @leeannsu42 Well, I tried to find out the manufacturer of the wonderful socks, but no luck. My husband says he found them at his favorite hardware store . We live in Colorado which is why a hardware store sells the socks. I’m sorry I couldn’t do better!

If you want to rule out Raynaud's, you would see a rheumatologist. That is the specialist that I saw today to discuss my daily Raynaud's symptoms.

Keep in mind autoimmune diseases often run in multiples—your symptoms may not have a single cause. Also, a flare up of 1 disease may trigger systemic immune symptoms that aren’t typical of the underlying disease itself. You don’t mention if all these symptoms began at once, have remained consistent over time, increase or abate spontaneously or in response to environmental factors.
Have you started keeping a symptom journal? Can help you & drs unravel complicated case if you can document relation of symptoms to all stressors: food, rest, temperature, time of day, emotions, in addition to clearly identifying onset of each symptom.

Hi Matt,

I also have no medical background, but I was reading your list of symptoms, and they sound oddly familiar to my own. The symptoms I have experienced in the last month include tingling/numbness in fingers that have given way to very cold fingertips with slight discoloration (a grey/blue). I have always had cold hands, but this is a new symptom that is present all during the day, with red flushed hands at night. Leading up this newest symptom, I have experienced, dizziness, fluctuating fatigue with a little weakness, and one episode of tinnitus accompanied by dizziness. The start of all this all had to do with digestive issues. I still have not gone to the doctor, but in doing research, it seems I may have SIBO and possibly a B12 deficiency due to malabsorption (rather than poor intake) caused by bacteria occupying my small intestine that should not be there.
All that to say, have doctors tested you for malabsorption OR for a deficiency in some key vitamins? From my research, the microbiome is closely tied to nervous system / circulation.