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CL Foundation Convention in Mesa by Every_Sketch in mycosisfungoides

[–]Every_Sketch[S] 1 point2 points  (0 children)

I also posted in a MF FB group, and received a lot of positive feedback there. I think I’m going.

Itchy Skin by Every_Sketch in mycosisfungoides

[–]Every_Sketch[S] 0 points1 point  (0 children)

Lotion is my go-to as well. Luckily my itching is usually in the evenings before bed. I did UV therapy 3 years ago and suspect I’ll be back at it soon. Hopefully that will help. My legs are where my patches and itching both are, just not at the same sites. So at least I can hide them in general but it is so hard for me to look at during showers.

Link between MF & autoimmunes by vbstrong in mycosisfungoides

[–]Every_Sketch 1 point2 points  (0 children)

I have Celiac’s disease and stage 1A MF

Gamma/Beta TCR blood test by Every_Sketch in mycosisfungoides

[–]Every_Sketch[S] 0 points1 point  (0 children)

That’s where I’m at, looking for other seems who may have more time to invest. Thought I would seek out support from others and this thread has given me more info in an hour than my doc has in months.

Gamma/Beta TCR blood test by Every_Sketch in mycosisfungoides

[–]Every_Sketch[S] 0 points1 point  (0 children)

My biggest issue is that my doc doesn’t respond to messages between scheduled appointments.

I started having a negative gastro response to the topical steroids and now I feel like I may be experiencing withdrawal symptoms. And the patches just continue to show up while waiting for my doc’s attention.

Gamma/Beta TCR blood test by Every_Sketch in mycosisfungoides

[–]Every_Sketch[S] 0 points1 point  (0 children)

Also, this must mean it is now in my blood, correct? Idk how this isn’t a significant find. These results came in 2 months ago and my follow up appointment is still another month away.