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New to the Forum - Introduction :) 3 years 9 months ago #7

  • Jodie
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Hi, no worries, might as well carry on with this thread.   :) Interestingly there is a link between EDS and MCAD, you'll find lots about that if you do a search.  Lots of info groups for this www.facebook.com/edspotsmcaduk


The exasperating things about MCAD are the difficulty of diagnosing (apparently the drug companies are dragging their feet to produce tests that the docs are asking for as they think there is no money in it)  + the huge variety of symptoms it can produce, as mast cells I'm told are in every body organ.    Before I was DX'd I tried varieties of mast cell stabilisers & antihistamines and they either made me worse or were ineffective.. apart from one - Zirtek.  
Doctors are few on the ground here in UK . This is a British group www.ukmasto.org/#sthash.sZhzaZDy.dpbs which is trying to put together a new list, getting docs to join up & at least give a dx of "probable MCAD".. worth joining, they do tend to ask a lot of questions b4 they let you in which is annoying, but let me know if u have any probs.    I saw Dr Clive Grattan in London. They have also organised a patient seminar with Dr Afrin (leading US specialist) & other docs in the autumn.

Other than you can have a look at our MCS page   www.ei-resource.org/illness-information/...hemical-sensitivity/   & thru other newbies' posts here - lot of info that might help.    There 's a link to the MCS map above where you can see you are definitely not alone in the UK !   Jodie
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New to the Forum - Introduction :) 3 years 9 months ago #8

  • helsbells
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Thank you Jodie, :)

i am a member of that FB group. I have seen Dr Grattan also. He prescribed low dose fenofexadine but I can't tolerate that any better that the rest. (I am super struggling at the moment with severe eye pain, I think it is the trigemenial nerve getting irritated, I tried to put the heating on two days ago and the dust particles it generated triggered it. This would be fine but once triggered it doesn't seem to stop - funnily enough I have just tried half a cetirizine and it feels like it might have made it worse definitely made me more foggy). Dr Grattan said people whose problem was inhalants have even worse time trying to get positive tests. Avoidance does really seem to be the only way but as I say at the moment I am still in pain even practising that as much as I can.

I think it does feel a bit niche in the UK, as I say I attended Breakspear for some basic treatments - out of all my conditions it is the first I would get rid of if I could. Thanks very much for the links. All the best. Helen
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New to the Forum - Introduction :) 3 years 9 months ago #9

  • Jodie
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Hi helsbells, might be just worth mentioning , I have a terrible time with generic cetirizine - it has to be the Zirtek the brand. This is something doc Grattan brought up as well - the generics are often not as good as the brands unfortunately. Definitely join the the UK MCAD support group - it costs £10, but as a charity they are always in communication with the best specialists & discuss with them all the time as to a way forward. They won't quibble with you if you've seen Doc Grattan ;)
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New to the Forum - Introduction :) 3 years 9 months ago #10

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Oh I should also add, these guys are great for getting answers about strange MCAD symptoms :) www.facebook.com/groups/486532874778463/
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New to the Forum - Introduction :) 3 years 8 months ago #11

  • Rolf MCS
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Sinds I am sick from work and now home I have the time to introduce my self.
My name is Rolf and I live in the souht part of the Nethernalds.
Near the triangel Maastricht (The Nethernalds) Luik/Liége (Belgum) and Achen (Germany)
This is the most air poluted regon of N-W Europe.
I was borne and raised here.
I was born in 1969 so at the time I am 46 y.o.
Late 2014 I started having a realy bad cough and the pulmonologist did say I had Astma whit the med's I woud be complaint free in 3 month's.
I strongly react to Diesle / two stroke / tabaco fumes but that was all.
And the pulmonologist did state that this was normal for an Astma patient so carry on living and whit the use of a polution mask I could get around fairly well.
About one month ago I noticed that oders came on to me more strongly and I accused my son of usesing too much air ferechner spry on the toilet.
He was surpiced of my accusation......
It felt like chemical warfare to me so all air frechner airosols were banned from the home but I was alreted that there was more than “just Astma”. (whitch on it's one is a burdon for those who have havy attacs).
And the search started for more information on MCS and my battel plan was created and put on the bookshelf to put in use whan the time would come in the future.
That future came faster than expected...
A week ago my sensetivy did go sky hi and or home is now oder-remediated and as I leave the hous I ware a respirator mask.
In the Ntherlands MCS is not recognized as a physiological disease and there is only one MD that is specilaszed in MCS.
As a HVAC mechanic I will lose my job, fortunaly the few friend I have will stick whit me.
On 17 million inhabitants the MCS patients association in The Nethelands count about 1200 members so it is not well known here.
And sinds I already bin to hell, I will not let this take me down!
I will fight to get my life back, to get more awernes out there among the people, and to have the goverment to recognize MCS as a real physiological disease.

As English is not my primery language I have to use translate for some parts this can lead to miscommunicatons, on beforehand apologize for any confusion.

Rolf.
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New to the Forum - Introduction :) 3 years 8 months ago #12

  • Jodie
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Hi Rolf, your post was easy to understand, no problem. Sorry you are having such a rough time at the moment. The more you can avoid triggers you more likely your system is to calm down & you can then tolerate some of them again, but it can take a while.

Have a read thru some of the posts here, on this thread and others , there's a lot you can learn. Here's another post from a new member with lots of information: www.ei-resource.org/forum/multiple-chemi...know-where-to-start/

There is an entire section here www.ei-resource.org/forum/mcs-etiology-main/ written by a member who is sure particulates such as you mention are the cause of MCS.

Is there a Facebook group for MCS'ers in the Netherlands? - see if you can find one. If not, you could start one! :) Jodie
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