Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by merkat30

  1. Today has been horrible. I had what I call a flare hyperanadrinic shakes so bad my teeth clattered cold hands feet for ages high blood pressure high heartrate . So cold ice cold dressing gown jumper heated blanket weighted blanket and other still so cold .Then when finally ended hours later go to burning feet face yet still cold with extreme weakness thinking adreline of upping mmy ketotifen for my mast cells was horridous .
  2. Sorry for later reply been very unwell anyways thank you so much all your comments so true everything I read .I really dont no where I be without this site . I have put complaint in we will see what happens from there. The appointment with mast cell doctor was alot more promising she up my meds see if it helps anything.
  3. He was just purely useless nin .he even made my primary gp question me!! Who has seen all evidence of my illness even though I got diagnosis on paper !!! And photograph evidence if am honest feeling very alone and bloody sick doctors saying I have mental problom when I have autoimmune disorders and bloody mast cell activation syndrome !! I also had to answer very strange questions of my gp he was all like do u think u are going to die of pots?!!! I said no but I cant live way I am untreated and same goes my mast cell activation syndrome he said when do u give up tho ... I said when I least have some sort normality like I am spos just give up and live this way --this really upset me . 31 and I am meant just give up on myself pretty much not look for help . He then went on to say I could refer u to medically undiagnosed centure... hello I have diagnosis or did u forget I thought then goes on say to me I talk to you in month ... makes me so mad . I really am not faking I never do sumit like that if I was how would I make all these symptoms appears...
  4. Sorry u feeling so horridous it scary also when dont no the cause. Do you get rash with weather changes ? Do you have mast cell probloms? This sounds soo much like me it just horrible isn't it hang in there x
  5. He assumed was migraine I never mentioned a headache to him at all I no it was a seizure as had as child no feeling afterwards think was cause of excessively high bp but he didnt take well me saying this was all I am the neurologist I no best ovs not !! I have migraines so I no what they feel like horrible sorry u have deal them to . He said sounds like u disassociate now I just read letter which if he classes passing out as dissociating he very strange doctor!!
  6. I have got email back with form to print of to complain I have. He was such horrid man . What women wouldnt be sad after a miscarriage u have be inhuman or just numb that why they wrote anxiety. I think he thought I was hypo women no idea what I suffered since 2012 at all . Like u said who use wheelchair if didnt need lot easier walk somewhere than get pushed be a burden.
  7. I have been seen also for same reason to prove them wrong . They dont seem to care that they said I was mentally fine strong even the lady said . I hoping he refers me somewhere he is ringing today he will now have copy of that vile doctors letter to read .
  8. What horrible horrible doctor !!! He ovs never had to live with these illnesses how it ruins people lifes he wants sacking . I have appointment over phone today with my gp they sposbly spos be referring me other neurologist we will see if it happens
  9. He was so vile so rude plus no help what so ever !! So sorry u had go though that to . I know why would I want be in wheelchair i miss out on sooo much i do because of this illness .I think he thought i was not all there even before i got to the appointment. I think personally mentally i deal real well with all this daily torture my family say i am most strongest person mentally they no . I do worry anyone that has mental health issue but also could have cancer or ms or anything g not mental it not diagnosed because he dont help we all no illness domt discriminate doctors do though.
  10. So sorry u hadve had to go though that. Some people are just so rude they are. Like how or even why did they become doctor if not to help people ? I won't I have been fighting for answers for 8 years now I keep going till they help .
  11. Hi everyone so I had appointment I have been counting the days down to see hoping they may help me with a neurologist in a well known hospital here in the uk. I have several illnesses hyper pots mast cell activation syndrome erythromelalgia seizures unknown cause and every vitamin under sun low I just gna bullut point all his faults as I may cry again am so mad. •I am in a wheelchair due to hyper pots weakness high heartrate blood pressure up down he goes to me "why u in that thing" this I think is really not a appropriate way to ask yes? •I have been having seizures adrenaline up and downs tremors generally bloody scary night time very unwell as I have wrote about in few posts this was the reason for my appointment "I said all this in detail .. he goes to me I qoute "ooh it a migrane " now i have had migraines as i am sure lot u have they are horridous!! But those symptoms were not of migrane i said this politely to him and health care nurse present. He was all i am the neurologist i no better dam right refused me a mri because i had one in 2016 his words i never asked for a mri or anything I may add only mri i have had since i was child i may add i am 31 years old women with 2 children I am no wimp i suffer daily with up down of bp and extremely volatile heartrate mast cell problems i never bug the doctors i am no hypcondriic which what he made me feel 8 years not lot help I thought this was gna bbe the help I needed to not be housebound able to live my life I ovs thought wrong ○ he then went on to say I need coping strategies for these imaginary..."migraines" !! How a seizure is migrane is beyond me... And wrote in the letter to doctors I need to be on mental health medicine and all in my head my husband who seen all this and was at appointment agree with me that this was very poor care . I feel let down dam upset I been treat this way I do . 😭I also really feel anyone that see him and has word anxiety on file (I miscarried 3 times from 2010 I was grieving this had been holded against me ever since ) I now have asked to be seen by different doctor got no reply do I put a complaint in is there even a point will get me anywhere or just use up precious energy ...
  12. I understand sorry u have go though this I deal with this daily up and downs of my bp and heartrate like rollacoaster it scary nothing has helped so far tho this doesn't not in no way mean nothing will help u .I hope u feeling lil better mentally at least . U are strong u will get though this !! 💗 keep drinking plenty fluids and eating what u can rest pick good Netflix to watch and when u can walk around room holding walls for support to keep your legs going diconditioned.
  13. I have alot tests over years it coming up to 9 years of this this Oct just after birth my daughter 😪😪😪lots drug trials to nothing helped so far been to lot different specialists all try hard but seems I have to live with way it is at moment till can find sumit to help .
  14. Everytime I post u seem the same our illness seem be so alike pistol I talk to gp (uk) and he may told me of for standing he said next time happens don't stand up . He going try mme on amoxciln for what thinks is sinis infection I not try these sinse I was 13 am now 31 nearly so am very nervous about it due mast cell problems. I finally got in with neurologist in may for seizures . Jyoti. I was stood when it went to 173 then drop to 159 after while went 56 then hour so later felt even more funny so took it was 41 so I try stand which I no I should not of my instincts was pots mk go higher stand .. silly me ... I can go up down like yo yo same my blood pressure always worse when unwell tho .go u being brave getting covid jab !! Sorry made you feel horrible .I hope have mine when doc let me due mast cell they being bit cautious ...
  15. Hi knellie yes I do think sounds like could be maybe try book a appointment with a imuoligist they will do any relevant tests see if can help u hope u get some relief if u need help in uk msg me I have number to a private doctor who deals with mast cell activation syndrome
  16. so am currently suffering with some sort virus I tested for covid 2 times clear .I had horrible day yesterday on the morning my heart went 173 bpm and then half hour later dropped to low 50s bpm then on afternoon dropped to 41 bpm I fainted luckly my mother and son caught me . Anyone else experience low heart rate to I had those kind flares few times I just assumed cause my blood pressure so up and down my heart rate be same currently inbetween doctors so only seeing general practitioner for my pots who doesn't understand hyper pots which alot doctor I seen seem think is my problem . I also have mcas assuming virus making mme more potsie generally feeling horridous. 😢😢
  17. What Is sleep 😭😭 I have hyper pots mast cell activation syndrome seizures and not fully diagnosed erthymilagia nightvtimes are horridous I also have the palpitations heart jump on falling to sleep it scare me it horrible .pain on night is horrible .
  18. Yes I feel I have be my own doctor most time my pots doctor told me cant do more so got no doctor for that mast cell activation syndrome doctor I haven't seen since march year ago .yes like they no nout about our condition then appear to no everything even tho I think personally we more risk deffo . I waiting see if safe with my mast cell activation syndrome as I react to everything !!
  19. The red rash comes on all day on of thinking was of mast cell activation syndrome but the the mottled I get I get shivers shakes with it usually low BP it horrible I cant get warm at all then suddenly after hours go burning hot !! . Yes cmep37 I also had that of my husband u look like corpse haha.
  20. Me I get this sooo horrible scare 💩out me it does !! Esp when got toothache and teeth clattering just evil . I agree with above weighted blanket doesn't take away but helps glad help you cmep37 . Also heat helps sometimes to or bag crisps
  21. My husband who not unwell got offered jab before me .... my sister who young 28 got offered nout up her my bro law who is also nothing wrong him also had it ...it joke I am housebound dysautonmia hyper pots mcas god no what else I haven't been offered it yet
  22. Ooh I get that it just horrid all over 😪😪😪
  23. Thanks cmep37 I will have look at ingredients online such horrid feeling it is isn't it
  • Create New...