Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> new here from uk, what king of specialist doctor i should see. http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1338934771 Message started by amberstars on 06/05/12 at 11:19:31

Title: new here from uk, what king of specialist doctor i should see.
Post by amberstars on 06/05/12 at 11:19:31

hello, i am a uk resident. 6 weeks ago i took some antifungal 'azole' drugs. i reacted to them, for the first time in my life my throat felt very tight and constricted. since then my life has been turned upside down. i am living on potatoes, beef, peas, apple juice and nothing else. i have a low histamine diet sheet which i intend to gradually work my way through. i have reacted to a number of foods, i itch, get hives, get dizzy, throat gets very tight with feeling of lump in throat. i have zero energy levels.

i was prescribed cetirizine H1 blocker and reacted to that quite badly, i only took a very small fraction of the pill as a 'test dose'.

to complicate things further i have candida in my oesophagus. i am trying to take nystatin for this but i cannot take the full dose as it brings on the itching hives and tight throat. ( i have hives as i write)

my family doctor prescribed prednisone to try to control reactions BUT the warning that comes with this is that it can cause oesophageal ulceration and can cause oesophageal candidiasis to get out of control. this is not something i want to risk as oesophageal candidiasis can turn life threatening. at present i have no way of taking a drug that can safely or effectively treat it. i am more concerned about oesophageal candidiasis than all my reactions.

i had been thinking that i may have a mast cell problem?? or total allergy syndrome?? my family doctor thinks that if i can get rid of the candida then my reactions will go away.

i had wondered about seeing one of the uk's best mast cell specialists, dr.grattan in the uk. (he undertakes 'private' work and therefore i would be able to choose to see him, as opposed to having to wait months and months to see a doctor in my local hospital. not all uk doctors work in the private system.) i dont know of anyone else i could choose to see who is knowledgable about mast cell disorders. i think he is a dermatologist and mostly sees people with urticaria pigmentosa. if it turns out that my problem is not a mast cell disorder, would dr.grattan be able to put his finger on what is wrong with me though? in the uk, in most hospitals, dermatology departments have taken on problems to do with all allergies in general. this is because the uk has a chronic shortage of immunolgy/allergy services.

the other option is to see an allergist/immunologist (as opposed to a dermatologist), who is not a mast cell specialist but someone who knows how to diagnose mast cell disease, (i hope) if indeed that is what i have.

tests: IgM and IgG are normal. IgE was not tested. lymphocyte count below normal, urea count below normal, bilirubin above normal. eosiniphil and basophil counts very low end of normal. thyroid, normal. tryptase test not available to my family doctor.

just not sure which way to go. not really asking for 'an answer' as to who i should see as such. just thought i would post. many thanks for reading i appreciate it.

Title: Re: new here from uk, what king of specialist doctor i should see.
Post by Joan on 06/05/12 at 17:05:24

Welcome to the forum!

There's a lot of information on this site about testing, symptoms, and methods of feeling better, so hope some of it helps you.

If you have any specific questions, feel free to ask. Everyone on here really cares!

I think I'm safe in saying that most people on this forum believe that it's best to see a mast cell specialist for a thorough work-up and diagnosis. Just my 2 cents!

Title: Re: new here from uk, what king of specialist doctor i should see.
Post by Anaphylaxing on 06/05/12 at 19:06:47

My issues started like yours, after an anaphylactic reaction. My system has not been the same since, but it did settle a lot with time. You are wise to be cautious with the steroids if you have candidiasis. I was on steroids for a year and they helped but I also ended up with adrenal insufficiency.

If you can see a mast cell doc, get tested and start anithistamines (H1 and 2) and maybe a mast cell stabilizer you might fight some relief. There are other patients in the UK. I will send you a PM with contact info that might help.

You are wise to be watching your diet.

They are horrible symptoms and so scary. I'm so sorry that you are experiencing them.

Title: Re: new here from uk, what king of specialist doctor i should see.
Post by Daffodil on 06/05/12 at 21:27:16

Hi Amberstars

There are more and more doctors in the UK who are taking an interest in mast cell issues which is great for us. If you tell me what part of the UK you live I might be able to help.

I joined UK Mastocytosis Group which along with this wonderful site has been my saviour and do not know how I would have managed without them.

Anne

Title: Re: new here from uk, what king of specialist doctor i should see.
Post by amberstars on 06/06/12 at 03:41:39

thanks for your replies. i'm going to write to some specialists to see what they think. feeling quite weak. Daffodil and Anaphylaxing will send private messages. thanks again very much for replying.

Title: Re: new here from uk, what king of specialist doctor i should see.
Post by Lisa on 06/13/12 at 05:51:41

I very strongly urge you to see Dr. Grattan, Amber. I´ve spoken to him a couple of times and also read articles he´s published and I know that he is indeed considered the highest authority on masto. He is a lovely man and I think you will find him the very best of doctors. Go straight to the top, dear and I think you will find it a wise investment in finding answers to your health problems. He will send you to others if he finds that he can´t help you or has colleagues who live closer to you.

Lisa