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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think that no one is taking me seriously?

155 replies

HelpMeHelpMeINeedARemedy · 23/07/2019 23:38

I'm 30. I'm a bit of a medical wonder - according to my GP - one of those people where anything is possible medically speaking lol. Over the last few months I seem to have developed intolerances/allergies to something/s. After eating some foods I experience gastro problems/random hives and throat spasms.

It is happening more and more often. My DP got a bit pissed with me earlier when I said it was happening and said "You can't be allergic to everything" Hmm. I said to him "Well no but it's possible I'm allergic to one thing that I keep exposing myself to".

My parents are also taking the whole "It's anxiety" route. DP also said to me this evening "When you had a panic attack earlier" I was like Angry WTH? I had actual, real, physical hives come up!

OP posts:
NotMaryWhitehouse · 24/07/2019 09:24

@AbbieDabbieDoo it's impressive that your gp took it seriously.... we think a family member might have the same thing but were told the NHS 'don't test for that'. Did you raise it or did he/she?

LauraMJ · 24/07/2019 09:28

Why are you not going for allergy testing? Are you sleeping a food diary?

LauraMJ · 24/07/2019 09:28

*keeping

BlackeyedGruesome · 24/07/2019 09:38

My bet would be to look at mast cell disorders. They make everything weird.

DD is hypermobile. A hell of a lot of things appear slightly differently.

You can be allergic to ingredients in tablets( fillers, not active ingredient)

You can react to histamine.

Sometimes it takes your own research to find the answer to be confirmed or disproved by medics. Asthma consultant told us there is not always a wheeze... Other doctors all expect a wheeze...no wheeze, no asthma.

DD has hypermobility, which makes asthma autism allergies and a host of other things more likely.

AbbieDabbieDoo · 24/07/2019 09:47

@NotMaryWhitehouse I know, I'm so lucky with my GP - I had years of other doctors not taking me seriously but when I moved to him he was adamant that he was going to get to the bottom of it! He spent months testing me for anything and everything (crohns, celiac, hemochromatosis amongst others) and one day I ate some stuff I knew my skin reacted to before an appointment and as he watched the blisters appear he almost shouted "histamine! That's histamine! Give me your arm, I need blood!"

I'd been fobbed off for years, and I'm aware that I'm so lucky to have ended up with a brilliant GP just because of where I moved to. I've no idea where the blood ended up (he may have had it sent to an allergy clinic instead of having to refer me and wait weeks for an appointment) but I would have thought you could request a referral to an allergy clinic or possibly self-refer

YesQueen · 24/07/2019 09:58

@loveforyesteryears not necessarily. I felt "off" but not unwell constantly. I was ill, and had been for 8 years until diagnosis

YesQueen · 24/07/2019 10:01

I have cholinergic urticaria which makes my throat tight sometimes. I get people going "oh I get prickly heat"
No, it's 100% not prickly heat!

To think that no one is taking me seriously?
HelpMeHelpMeINeedARemedy · 24/07/2019 10:09

@BlackeyedGruesome I have hypermobilty. That's interesting. There is definitely a version of my beta blocker that I can't take as it makes me wheezy.

@AbbieDabbieDoo My GP finds my conditions quite fascinating so I will ask him. I'm lucky GP wise too.

@YesQueen My mum keeps telling me it's the heat!

OP posts:
NotMaryWhitehouse · 24/07/2019 11:12

@AbbieDabbieDoo that's brilliant!! Proof that there are still some fabulous GPs out there!

DateBanana · 24/07/2019 11:16

en.wikipedia.org/wiki/Globus_pharyngis

I had a friend who had this. Very distressing. Good luck with your treatment.

OnGoldenPond · 24/07/2019 11:22

Don't bother talking to your family about your symptoms. It sounds like you have been firmly placed in the good old mum who is here to solve all our problems slot, and accepting you are also a human being who may have need of care also just doesn't fit in with this role.

Just speak to your doctors about your symptoms and treatments and don't expect involvement from your family. I just gave my DH a call from the consultants office after getting my diagnosis as he needed to arrange childcare for my hospital stay after my emergency operation to remove the brain tumour.

OhNoooNotAgain · 24/07/2019 11:25

I'm probably outing myself here, but it sounds to me like you have the Triad of EDS, POTS and MCAS.

You're basically describing my life! Lol

ThumbWitchesAbroad · 24/07/2019 11:35

OhNooo - that's very interesting - didn't know they all went together frequently!
Good to know though - I have friends with EDS who have a few allergies too, although as far as I'm aware they don't have POTS.

SagAloojah · 24/07/2019 11:55

I’m still not eclair on why you are pastry if you’re allergic to bread and pastry. Were you honestly surprised?

user1471449295 · 24/07/2019 11:59

Why don’t you do a food intolerance test?
It’s either an allergy or anxiety or psychosomatic. Hardly a medical wonder.

HelpMeHelpMeINeedARemedy · 24/07/2019 12:17

@user1471449295 There's no need be funny about it. I don't think I'm a medical wonder because I have possible allergies Hmm I think it because I have been A) Told by several Dr's and consultants and I have rare congenital abnormalities.

@SagAloojah I don't have any known food allergies - just stated experiencing symptoms as I've already said.

@OhNoooNotAgain I do have EDS/POTS for sure!

For people that are interested I actually have - Congenital long segmented tracheal stenosis/a cervical rib/klippel-feil sydrome/scoliosis/EDS and POTS Shock I have the most fascinating looking xrays! That's me totally outed 😂

OP posts:
HelpMeHelpMeINeedARemedy · 24/07/2019 12:18

@OnGoldenPond Oh! That sounds awful. Are you OK???

OP posts:
HelpMeHelpMeINeedARemedy · 24/07/2019 12:20

@DateBanana That came up when I Googled my strange throat thing - could be that but then I think wouldn't it happen with every food. I know it's not milk or wheat as Dr tested them a few months ago.

OP posts:
OoohOnly90CaloriesIllhave10 · 24/07/2019 12:26

Create a food diary.

Avoid the trigger foods.

Get allergy tested. Skin and bloody.

OoohOnly90CaloriesIllhave10 · 24/07/2019 12:26

*blood

ThumbWitchesAbroad · 24/07/2019 12:30

HelpmeHelpme - my osteopath at one time wondered if I had cervical ribs - he was hopeful that if I did, I could have them removed and have scars on my neck so I could say I'd had my Frankenstein bolts removed.
He's a funny bloke, my osteopath Grin

HelpMeHelpMeINeedARemedy · 24/07/2019 12:38

@ThumbWitchesAbroad Mine is very bothersome Sad It causes headaches, neck ache, pins and needles in my arm/hand.

OP posts:
HelpMeHelpMeINeedARemedy · 24/07/2019 12:40

@ThumbWitchesAbroad My GP thought it was fascinating and asked if I wouldn't mind showing him what it looked like from the back. He said he'd only ever heard of them and never seen one. His words were "You're certainly not square are you" 😂

OP posts:
weaningwoes · 24/07/2019 12:40

@HelpMeHelpMeINeedARemedy You mention your husband has nut anaphalaxis. Could this possibly be why he lacks patience with the idea your symptoms are allergy related? We tend to set our baseline where we are, so if HIS experience of allergies is full on, throat closing up, system going into shock, will die without an epi-pen type reaction, then maybe he thinks it can't be a 'real' allergic reaction if you're just going a bit rashy and getting an upset stomach - of course he can't 'see' the throat symptoms and they do sound unusual and hard to describe, so he may just not be 'getting it' because of his own experiences? Not an excuse for him to be dismissive but definitely worth factoring in.

Another factor is the proliferation of self-diagnosed 'allergies', ranging from the severe to the 'ooh I'll bloat up if I eat that ice cream, I better not'. For a lot of people this has made them sceptical of any supposed 'allergy' that isn't swiftly verified and diagnosed by a doctor.

My baby daughter was a howling, miserable little thing from her first week until she was nearly six months old; she got better after that but still had awful bloating and bowel symptoms and was regularly 'spitting up' (at least once a day) until she was nearly one, and had repeated ear infections.

All the health practitioners I spoke to told me that's just babies; EVERYONE I spoke to in voluntary breastfeeding support told me she had Cows Milk Protein Allergy and to put her and me on a dairy free diet. I ignored them for the best part of a year because no doctor had said so, when I asked them they dismissed it, and why WOULD she be allergic to something most babies live on as a matter of course?

The week we went dairy free she was completely transformed. her little pot belly flattened out within a few days and felt soft for the first time ever; no more spitting up; no more ear infections. Slept better, was so much happier. I could have kicked myself around the world for being 'sceptical' for so long and putting so much faith in medical opinion when there was obviously something the matter with my girl whatever they said.

Definitely do an elimination diet and then reintroduce. Keep a food diary. Work it out for yourself if your drs won't help you. My daughter still has no diagnosis, but for me 18 months of her being dairy free, content, and thriving is enough for me.

Greyponcho · 24/07/2019 12:46

If theres a side effect to a medication, I’ll get that side effect for sure, so I appreciate where you’re coming from.
What I have found is that even the “inert” fillers in some medications can cause unpleasant side effects even though it is not widely recognised, some health care professionals have said that I’m not the first to suffer them. Even changing brands of medications can sometimes help