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Systemic mastocytosis - just diagnosed

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amanda95910
amanda95910

I have just been diagnosed with Systemic Mastocytosis and I was wondering if this illness always ends badly? My Haematologist has confirmed the diagnosis by BMB but he wasn't a specialist in this field so he has referred me to a Dermatologist who apparently I'd the specialist even though I have no skin involvement? I have so many questions but nobody to ask?

0 likes, 6 replies

6 Replies

  • alex92803
    alex92803 amanda95910

    Posted

    Amanda I know what a shock this must be and I am sure someone will be along with answers shortly. I only have mcad along with eds and pots. I hope your situation isn't as dire as you think.

    Warm regards

    Alex

    • amanda95910
      amanda95910 alex92803

      Posted

      Thanks Alex I have my head around it now smile I think initially I panicked. Thank you for taking the time to answer x
  • cheryl44643
    cheryl44643 amanda95910

    Posted

    Hello. I don't think it ends badly, or indeed at all, it seems to just be a way of life, it needs managing. Search Lisa Klimas. She's a Harvard biochemist I think, certainly a highly trained professional, and she has SM. She not only writes a blog she produces vast amounts of information. She gets inundated by emails but she will answer your questions in time. She's in the USA so can't help you find a British doctor of course. There's also 'mast attack' and 'me and my mast cells' I think. There's plenty of info about, it's not nearly as rare as they say.

    The dermatologist your seeing, it's not Clive Grattan is it? I've seen him and I have to say I was seriously underwhelmed. At least you have the diagnosis confirmed, Grattan doesn't even offer BMB. Shrugged helplessly and waffled then mispronounced a commonly used drug. You need to become your own expert in this, the medical profession in this country is sadly ignorant about it.

    Good luck. I'd be very interested to hear how you get on.

    • amanda95910
      amanda95910 cheryl44643

      Posted

      Hi Cheryl, thank you for replying. I have been given epi-pens, I've had a bone scan which shows moderate osteopenia so am now on Adcal and a bisphosphonate and a H1 blocker. I saw Dr Clive Grattan for the first time 2 weeks ago, he listened wrote down the relevancy I'm guessing and he looked at my skin. I have a few red spots but nothing rash like and they don't cause Mr problems. Dr Grattan thinks I have Systemic mastocytosis but needs the skin biopsy to confirm this???? I don't understand my allergist and asthma doctor in Addenbrookes told me I have it and sent me to Haematology in the N&N I also have confirmed ckit816 mutation but apparently it isn't enough to confirm SM? So I've had the biopsy and have to wait 6 weeks for the result. However saying that he has put me on the histimine blockers so who knows? He said the BMB that Haematology had done wasn't enough? I don't understand really but apparently to be eligible for a clinical trial you need to have is it so many major and minors? Dr Grattan is a Dermatologist in the N&N but will be leaving shortly to work in Guys in London. I really don't know what happens next. Hope you are well and keeping the flushes tiredness and headaches at bay xxx
  • cheryl44643
    cheryl44643 amanda95910

    Posted

    Hello. There is no doubt in my mind that Grattan is well out of his depth with this and you can't trust what he says. Skin biopsy IS NOT A DIAGNOSTIC CRITERION for SM, quite the opposite, SM has to be confirmed by NON DERMAL biopsy, which you have had done, your diagnosis was confirmed and he did not know enough to realise that...  There are World Health Organisation diagnostic protocols which he seems unfamiliar with. He should not have subjected you to a skin biopsy, especially since you have no significant skin issues. He has somehow become known as dealing with MCAD, probably by simply stating an interest and other consultants assume he knows something about it. I've seen it happen before and found idiots who are dangerously ignorant. Do try Lisa Klimas and those other websites. You need some one other than Grattan, seriously, he does not know what he's doing with this. Is it worth discussing it with your GP? they should find a suitable consultant but often leave it to the patient. You could write to your haematologist (label it private and confiential) and tell him what Grattan has done and voice your concerns, he may try to suggest another consultant. It sounds like he knows a lot more about it than Grattan.
    • amanda95910
      amanda95910 cheryl44643

      Posted

      Thank you Cheryl it's all rather confusing for someone new to the disease. I don't know if you are taking Fexofenadine, but for me I think my tiredness has improved slightly but come about 7pm I'm I'm bed drained with a headache etc. Maybe this is normal? Think due to the fact that I'm taking it at 7 am it might be wearing off by the evening? I'm am still not eating wheat or nuts as I don't trust the pills to stop a bad reaction. I will write again when my biopsy results arrive but I'm not confident anything will show up.

      Keep well hun and thank you for your advice..I must admit it does seem like ppl are not impressed with Dr Grattan om some of these sites.

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