My visit with UK specialist who can diagnose MCAS

[Allyb510]

@Allyb510

Hi, rushing to get to Drs and feeling rubbish, but will reply more later.

Thank you for your reply Yes, I reckon it's a desperate cry for oestrogen, a phyto-oest far less dangerous than animal oestrogen.

I did EXACTLY the same re garlic etc! I didn't know about MCAS then still don't really, so am just as lost as before....... More later!

No worries J. Hope you feel better and that all goes well at the doctors. Don't get me started on garlic...I used to eat 6 cloves at a sitting, in the hopes that it would kill all those toxic organisms. I wonder if it works on Borrelia b.? Somehow, I don't think so...

 

[ukxmrv]

There was a BBC TV program last night which briefly featured MAST Cells and CFS. If I find a link I will post it here. It was called Dr Weston

 

[Allyb510]

There was a BBC TV program last night which briefly featured MAST Cells and CFS. If I find a link I will post it here. It was called Dr Weston

@ukxmrv, Thanks for that! I will definitely watch. I'm assuming it's Dr. Weston's Casebook...Anything that helps me conquer the rogue mast cells has got to be worthwhile...

 

[ryan31337]

Is it your POTS doc who orchestrates your referrals to other specialists? ... I agree the ability to self refer is invaluable. Do you have a generally supportive GP?

Hi @Allyb510,

My POTS cardio has recommended onward referrals by name, I've then gone back to my GP to actually write the referral via the NHS, so I can get in the system. In all but the GI doc I've paid privately for the first appointment to speed things up and get more time with them to cover the history properly and give them time to think. I wish I had done the same with the GI doc, I was rushed out in under 10 mins & we didn't get anywhere, too complicated for an NHS clinic!

My GPs are a mixed bag. Ultimately I couldn't get any continuity of care there because they were so overworked and it was very difficult to see the same doctor twice. So now the only contact I really have with them is to call up and say please do this test that consultant x has asked for, or please write referral letter that consultant y has recommended. Then endless nagging to make sure they actually do it...

@Allyb510 My BP drops seem to always be in the evening. Or at least the most noticeable episodes. No fainting, just rapid onset heat, irritability, almost hyperventilating.

Could that be postprandial @ahmo? Sounds similar to reactive hypo's I experienced before changing my diet.

 

[Abha]

@ukxmrv, Thanks for that! I will definitely watch. I'm assuming it's Dr. Weston's Casebook...Anything that helps me conquer the rogue mast cells has got to be worthwhile...

Hi Allyb510 and all,

Here is the link(see below) for Dr.Weston's BBC programme(last night/Wednesday).It was entitled Incredible Medicine:Episode 4.All episodes make interesting viewing....As far as I recall, the part on MAST cells was near the end of that programme.

http://www.bbc.co.uk/iplayer/episod...dicine-dr-westons-casebook-series-1-episode-4

 

[Allyb510]

Hi Allyb510 and all,

Here is the link(see below) for Dr.Weston's BBC programme(last night/Wednesday).It was entitled Incredible Medicine:Episode 4.All episodes make interesting viewing....As far as I recall, the part on MAST cells was near the end of that programme.

http://www.bbc.co.uk/iplayer/episod...dicine-dr-westons-casebook-series-1-episode-4

Hi, I watched the programme and found it interesting. The young patient featured was a severe case and she needed continuous IV antihistamines. How terrible. She had a positive outlook despite that...I don't know how she managed to keep so upbeat.

 

[justy]

I haven't watched it yet, but apparently Dr Afrin is on it.

 

[Allyb510]

QUOTE="ryan31337, post: 824345, member: 22803"]Hi @Allyb510,

My POTS cardio has recommended onward referrals by name, I've then gone back to my GP to actually write the referral via the NHS, so I can get in the system. Ahh, that's how it works. Is there any chance I could have your POTS cardio's name please Ryan? I should have been evaluated years ago but better late than never.

In all but the GI doc I've paid privately for the first appointment to speed things up and get more time with them to cover the history properly and give them time to think. I wish I had done the same with the GI doc, I was rushed out in under 10 mins & we didn't get anywhere, too complicated for an NHS clinic! That's sensible and I would do the same. With our complex conditions there is no way 5-10 minutes is adequate. This is one reason why we aren't diagnosed for years I feel.

A GP once told me that the NHS was created for the population as a whole and not for individuals. Our conditions have made us individuals...;-(

My GPs are a mixed bag. Ultimately I couldn't get any continuity of care there because they were so overworked and it was very difficult to see the same doctor twice. So now the only contact I really have with them is to call up and say please do this test that consultant x has asked for, or please write referral letter that consultant y has recommended. Then endless nagging to make sure they actually do it...Well, in one way it's good that they act on what you (and the consultants) say at least, but frustrating that you have to follow up to see it's been actioned.

 

[Allyb510]

I haven't watched it yet, but apparently Dr Afrin is on it.

He was. He seemed pleasant but the subject matter was serious of course. I wished it had been a longer segment.

 

[ryan31337]

Hi @Allyb510,

Sure, I'll PM you his details. Ironically he is based at King's...so don't be surprised if he leaves out CFS in his correspondence! Cannot fault how thorough and well connected he is, such a breath of fresh air compared to other clowns that can't even bring themselves to refer you on when they don't understand something!

One good example of the high level of care being that I had a significantly abnormal cardiopulmonary exercise test last year. It was a metabolic rather than cardiac or respiratory issue, so clearly not something the cardiologist was an expert on. Instead of glossing over it he sent the report on to a colleague with a special interest (PhD) in CPET, who's now assessing me with repeat testing. As far as I can tell the expert is an anaesthetist, clearly no obligation to offer care to me, so I'm really pleased! It seems to get anywhere you need to find the ones with active research interest in the area...

 

[ahmo]

Could that be postprandial @ahmo? Sounds similar to reactive hypo's I experienced before changing my diet.

Yes, postprandial. Is this some sort of recognized thing? My meal is small, and the flushing tends to go on for a few hours after.

A GP once told me that the NHS was created for the population as a whole and not for individuals. Our conditions have made us individuals...;-(

 

[ryan31337]

Yes, postprandial. Is this some sort of recognized thing?

There's a few of us here that are aware of issues like this after eating, labelled reactive hypoglycemia by my endocrinologist. It's perhaps debatable if there are actually classic, measurable hyperglycemia/hypoglycemia episodes taking place but the effects appear to be the same whatever the mechanism. My POTS literate cardio & endo's recognise it as common in their autonomic dysfunction patients and treat with ketogenic diet. This was appropriate for me as my issues had gone waaaay past the "just eat a little protein & fat with any carbs" advice you usually see. Interestingly they also see many of the sleep issues resolve in patients after dietary change too and assume those problems are also mediated by overnight blood glucose regulation.

 

[Allyb510]

There's a few of us here that are aware of issues like this after eating, labelled reactive hypoglycemia by my endocrinologist. It's perhaps debatable if there are actually classic, measurable hyperglycemia/hypoglycemia episodes taking place but the effects appear to be the same whatever the mechanism. My POTS literate cardio & endo's recognise it as common in their autonomic dysfunction patients and treat with ketogenic diet. This was appropriate for me as my issues had gone waaaay past the "just eat a little protein & fat with any carbs" advice you usually see. Interestingly they also see many of the sleep issues resolve in patients after dietary change too and assume those problems are also mediated by overnight blood glucose regulation.

Yes, I too have noticed a definite connection between blood sugar fluctuation and reactions, but now I know there's a name for it ;-)! I sometimes have confusing reactions that come out of nowhere (and they can be serious and require Casualty), for instance, in late morning when I've been fasting overnight. I never knew how that could be possible since I hadn't eaten or taken anything. So I'm afraid to let myself go too long between meals.

Thanks Ryan. My next port of call is to research reactive hypoglycaemia...

 

[Allyb510]

Hi @Allyb510,

Sure, I'll PM you his details. Ironically he is based at King's...so don't be surprised if he leaves out CFS in his correspondence! Cannot fault how thorough and well connected he is, such a breath of fresh air compared to other clowns that can't even bring themselves to refer you on when they don't understand something!

So many doctors are like that. They fall at the first hurdle when you don't entirely fit the picture. I always wanted a "House", someone who would tenaciously keep digging for the answers.

One good example of the high level of care being that I had a significantly abnormal cardiopulmonary exercise test last year. It was a metabolic rather than cardiac or respiratory issue, so clearly not something the cardiologist was an expert on. Instead of glossing over it he sent the report on to a colleague with a special interest (PhD) in CPET, who's now assessing me with repeat testing. As far as I can tell the expert is an anaesthetist, clearly no obligation to offer care to me, so I'm really pleased! It seems to get anywhere you need to find the ones with active research interest in the area...

What a great guy! That is how doctors should behave Let us know how you get on with that.

 

[Berzerkerina]

There are NO compounding pharmacies in the UK apart from one that does bio identical hormones. Its a real pain because Ketotifen helps me, but I also react to it whenever I try and increase the dose, and I can take some antihistamine brands but not others...

I have an apt fro Dr Croom in June, but your experience has not filled me with hope - especially as I have a clinical Lyme dx and have terrible drug reactions, and am on keotifen and antihistamines already for some time...

@ryan31337 - I got the impression from others that Dr Grattan was a bit hit and miss so thought Dr Croom would be a better fit. Dr S was top of my list but I hear he is VERY expensive and doesn't communicate well with GPs etc.

If I still get no joy we may head over to MN in a year or two and see of Dr Croom might work with Dr Afrin. Im convinced MCAS is causing a lot of my symptoms, possibly even the fatigue and I don't feel secure in my Lyme dx as all testing was negative.

Hey Justie hello, i am searching for a doctor in UK for a friend of mine who is very severe, could you write me please a private message or in fb ( Hefferini Vandali ) thanks very much, maybe we can help him

 

[wigglethemouse]

Hey Justie hello, i am searching for a doctor in UK for a friend of mine who is very severe, could you write me please a private message or in fb ( Hefferini Vandali ) thanks very much, maybe we can help him

I believe Justy was taking a break from PR - below is from the profile page

I will be away for a while - I'm concentrating on healing and being, Take care lovely people xx