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Had My 1St Skin Biopsy Today (Without Numbing It) How Many Had One?


RichGotsPots
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Skin Biopsy  

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Rich, I wished everyone had access to the doctors who do this type of biopsies. I know for myself I had to travel into the city and although it is only a day trip, the after effects on my body were so hard. Everything I do my body pays for. I'm sure you and others know what I mean. I consider my lucky to finally have gotten tested...still waiting for the results. I have had another large biopsy on my left arm before I was dxex with POTS that showed mild fiber PN. Also, I had to have to emg muscle testing first to qualify to the biopsy. So, this makes me think you can't just get a biopsy, although I could be wrong. I think right now it seems like to seems to be the trend that more doctors are looking in this direction with those of us of are not getting well, having numbness and tingling in the arms and legs, pain that is unresolved and not understood. I have had terrible pain forever that was just not understood with POTS and I'm finally keeping my fingers crossed that this dx will make sense of all of this for once and for all. Does this make any sense to you? Maybe now that doctors are seeing that sfpn is secondary to POTS it will become in the near future a go to procedure for those who really are not getting better. : ) I look forward to hear what others think... I wish you the best Rich : ) and hope there is a way to have the IVIG covered. Makes me sad to think you come all this way and it's not covered. : (

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  • 2 weeks later...

Rich, I just got back back from the doctor and he said I have it .The biopsy showed that I have it pretty bad. He wants me to go for another biopsy I was crying so much that I can't remember what the new one is for. : ( I'm having so much pain in my chest , flank and back. He thinks it may have taken over my GI system and bowel as well. Everything is really starting to make sense.

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Rich, a comment and a question:

1. After reading what I did above about your reaction to animals and I'm reminded of your symptoms I would not rule out MCAS just because you didn't respond to H1 and H2 blockers. PM me if you want more info on why.

2. Is it possible that the reason the QSART doesn't pick up SFN in so many is because like many other autonomic reflex tests it is looking for an absence os sweating and does not recognize an overreaction to sweating? (figure w all your research you would know!)

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Rich, I just got back back from the doctor and he said I have it .The biopsy showed that I have it pretty bad. He wants me to go for another biopsy I was crying so much that I can't remember what the new one is for. : ( I'm having so much pain in my chest , flank and back. He thinks it may have taken over my GI system and bowel as well. Everything is really starting to make sense.

Bella, I'm so happy you are getting closer to more answers and now any doctor will take you much more seriously. Keep an eye out for my new posts on the subject.

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Rich, a comment and a question:

1. After reading what I did above about your reaction to animals and I'm reminded of your symptoms I would not rule out MCAS just because you didn't respond to H1 and H2 blockers. PM me if you want more info on why.

2. Is it possible that the reason the QSART doesn't pick up SFN in so many is because like many other autonomic reflex tests it is looking for an absence os sweating and does not recognize an overreaction to sweating? (figure w all your research you would know!)

Kelly,

1. I also tried singular as well with no affect. My point with the new dog crazy allergy is that I can distinguish it from my normal pots breathing problems and they are nothing alike. Even if mast cells are involved I think its more in response to a large immune issue.

2. Going to have so new posts digging deep into fibers and what not so keep an eye out, dont want to spoil it just yet ;)

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Rich,

Ty for all of your support. You are amazing, keep up all of your great work.

Bellamia

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Rich,

My son has MCAS and has not responded to Zantac, Zyrtec, Pepcid or Claritan. He has also tried gastrocrom with no luck. He is now trying Ketotifen. Dr Afrin said there is a very long list of medications to try. Not everyone responds to the basic anti-histamine regime.

Also, now my daughter (who I don't mention on here much because her symptoms have always been mild) symptoms are ramping up. She is my fainter or near fainter, while my son is the nauseated one. She is scheduled to have a skin biopsy done in May. The doctor might do one on my son in the future. My son had the thermoregulatory sweat test done in Cleveland and he did not sweat on his torso or left arm and had reduced sweating elsewhere. From that test, they presumed he had small fiber neuropathy. So a skin biopsy would be more conclusive.

Christy

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Hi Kelly,

My daughter is 21. She has recently had to reduce her hours at work from full time to part time. It is not the best job for someone with dysautonomia, she works at an open boarding kennel. The barking and dogs running around overwhelms her at times. They have accommodated her though by letting her sit down whenever she needs to.

Christy

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