merkat30 Posted December 11, 2020 Report Share Posted December 11, 2020 I have been having seizures autonomic I am assuming I have been told they is a 3 year waiting list!!! That gp will get advice of them . Feeling very alone allready with the clonidine withdrawal been week from h*** then got told this this morning I am scared am upset generally feeling horridous. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted December 13, 2020 Report Share Posted December 13, 2020 10 years ago I waited about 6 months to see a neuro but waiting lists have got much worse since then and now with Covid many consultants have seen hardly any patients this year. I know when I wanted to see my cardiologist about my bradycardia this autumn his secretary told me he was only seeing urgent patients with life-threatening problems in his NHS clinic. Of course he would have seen me privately within a few days! Is it worth seeing how much it would cost to go private? I assume A&E have been no help or like me you just refuse to go now after too many bad experiences! Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 14, 2020 Author Report Share Posted December 14, 2020 Yes waiting seem to be horridous on everything . I refuse to go to 🏥because they treat me horrible last time i went come out covered in bruises and they had no idea what i needed wouldn't give me saline and because i refused anti sickness medication because of mast cell activation syndrome they were very rude I couldn't cope with other reaction on top everything else. I tend avoid them .I do worry with my temperature up when I am reacting or having dysautonomia pots flare they keep in thinking it covid now . Quote Link to comment Share on other sites More sharing options...
cmep37 Posted December 14, 2020 Report Share Posted December 14, 2020 Yeah I'm the same ! won't go to A&E unless I'm dying! Too many rude doctors who don't understand, won't listen and treat you like you're mad! My temp goes up quite often when I'm in a flare so I know what you mean about them thinking it's covid. I also have a lingering cough after having pneumonia at Easter so I keep having to reassure medical people that it's not a new cough and I don't need a coronavirus test! Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 15, 2020 Author Report Share Posted December 15, 2020 Ooh I no going to those 🏥 is so scary .alot the doctors think the machine is broken 🙄🤥really upset me going though same stuff everytime .I also have awful viens and last person who tryed to take blood got other person in to try she was hitting my hand generally going really rough with me then put canular in wrong was horridous had to then have other person do it ended up saying my husband please take me home I feel even worse now next day full of bruises hand not been same since was over 11 month ago i have been extremely unwell since i just dont want go back .so i am even more not wanting to go anywhere with the virus . So scary being so unwell not feeling safe under care of the medical professionals . 😔😔😔 Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 15, 2020 Author Report Share Posted December 15, 2020 Plus with bp going so high dont no if saline would even help now anyways . Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 16, 2020 Report Share Posted December 16, 2020 @merkat30 - for me IV Fluids bring my BP down when it is high from HPOTS b/c they help relax the blood vessels. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted December 16, 2020 Report Share Posted December 16, 2020 I feel so sorry for you @merkat30. I feel awful at night with my bradycardia but at least I can temporarily get rid of the symptoms by standing up. Would your GP write you a letter to give to A&E doctors explaining your situation? Often when we're ill enough for A&E we aren't able to speak up for ourselves and at least a GP's letter would mean they knew it wasn't just anxiety/panic attack/whatever other psychiatric diagnosis they try to slap on you! Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 16, 2020 Report Share Posted December 16, 2020 In my case my doc gave me al letter to take to ER stating my diagnosis and that IV fluids will stop it in an emergency. Often that woul dbe enough to get at least a liter of IV fluids to hold me over, but still there were docs that refused. One said he did not believe in POTS and another said if I can drink I don;t need IV fluids. Needless to say - I ended up admitted later that day due to autonomic seizures that went away with - SURPRISE! - the IV fluids that were denied to me in ER. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 16, 2020 Author Report Share Posted December 16, 2020 That sounds so like me . Yes I had letter of dr g a cardiologist I used see and one Male doctor at ane had me in tears if u really unwell u take the sickness tablet he said me I have mast cell I didnt dare he refused saline was generally horrible had stop husband shouting at him same hostpital was a awful nurse kept coming in turning the saline up which seem to make me very dizzy and nausea headache shakes like shock really if I get the drip fast my husband turn it down she kept coming in squeezing bag cause she wanted me gone . I am very quiet person so I never said anything went home crying feeling worse .. i just feel i dont want go back that hostpital they never belive me even with doctor note and BP machine saying other wise ...no no sorry all the machine in hstpl are broken I forgot Quote Link to comment Share on other sites More sharing options...
Nin Posted December 26, 2020 Report Share Posted December 26, 2020 I waited a year to see a neurologist in the UK. Have you ever linked your seizures to your mast cell activation syndrome? I have seizures and read mast cell can cause non epileptic seizures. Eating peanuts causes a seizure. Im just so confused with these seizures Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 26, 2020 Author Report Share Posted December 26, 2020 I have thought it could be related most definitely so has my husband .I also think the very high blood pressure has sumit do with them and my cortisol levels on a night . . Doctors dont seem to though . They been little help I think cause I stay at home instead going into hstpl everytime they dont believe me . Also think they no use so I stay at home only so many times u can go in and get treat horrible even with specialist doctor notes .I am going to ask my mast cell doctor in april if my appointment dont get cancelled that is. ....again. it just terrible I so sorry hear others going though it to . Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 26, 2020 Author Report Share Posted December 26, 2020 Glutamate is something else I noticed cause them so now stay away from that. Quote Link to comment Share on other sites More sharing options...
Nin Posted December 27, 2020 Report Share Posted December 27, 2020 Are you seeing a doctor private for mast cell in the UK? It seems through the NHS no one specialises in it. I'll have to go private if I want to see if I have got that. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted December 27, 2020 Author Report Share Posted December 27, 2020 Yes I see a dr. Croom at Nottingham hospital she seem nice.hoping she will help . Quote Link to comment Share on other sites More sharing options...
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