Sticky Blood-Hughes Syndrome Support
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Really feeling Poorly, losing the will.....can anybody help???

I had a really bad turn last night could hardly breath the buring sensation down my face behind my eye and into my arms was very worrying, I did want to call for a Doctor or just lie down and never get up again. Recently been to see a Neuro who will be calling me in for another Lumber Puncture. I have only seen the Neuro once and received a copy of his letter to my Heamo, am really confused as most of the facts that I discussed their have been mis-quoted or misunderstood, and noted incorrectly. I dont know what to do as it is very important to me that perhaps they should be ammended. Has anybody got any advice as to how to approach this situation as I really do not want to upset anyone. I still have not got to the stage where anybody puts me at ease. I just do not know what to do anymore, sorry to moan but I really am losing it. Im so frustrated and upset.....every time I see somebody and explain any symptoms I am told that it is not normal, starting to feel that it's suspected it all in my head!!!! any help and advice would be truly appreciated Traceylouxxx

7 Replies

You would best off being referred to St Thomas' or your nearest APS rheumatlogist/haemotologist. You need a team with full understanding of the condition! Hope you feel better soon x Mary F x



I am so worried now as most of the appointments I have been going to are actually in London thats why if you remember I have been talking to re;seeing somebody in London re;Sneddons syndrome. I feel like cancelling all future appointments, just received a letter from my heamo who states that she feels that most of my symptoms are atypical I just dont understand, looking at the new poster everything on that is typical..I asked her about this in consultation but she did not reply. What a mess...cant go on now Thanks you for your support Traceylouxx


I'm so sorry you are feeling this need to make them listen to you or as Mary says be refered to St.Thomas or at least get you doc' to get in contact with them for are within your right to DEMAND this.

Please dont feel you are alone in any of this....we are here. Do you have any family or friends that could go with you to make sure what needs to be done is done or to contact the necessary people for you & when you have the appointments for someone to go with you to listen to the discusions so they will remember for you? I take my what I forget or miss he 's got it!

Hope you improve soon, dont leave it, you must be seen & listened to, let us know how you get on xx


Dear Traceylou i had the same thing happen to me the letter i received, granted it came very quickly but was inaccurate. I got in contact via email to the nurse specialist - in my case rheumy and politely mentioned the errors and mis quotes. Also because of memory issues i said i keep a log and when i checked it i also used the opportunity to give a more accurate account of an tia episode (not that i was aware that was what it was at the time) because under pressure during a consultation you dont always rember things precisely so i told them i checked my diary when home infact my account did prompt an urgent neuro opa so it worked in my favour

- failing not having a nurse specialist link if you google the consultant you will get contact details for the secretary so email or ring them which ever suits you best.

Sorry you were so poorly sounds llike you need to see your doctor hun hope you are better today kathy xxx ps you are not imagining it hun either - on here its such a common battle we have to convince doctors but there are some really good ones including neurologists but if you pct allows defo pusth for st t thats what im doing after private consult tomorrow xx


Any tips on how to set it out in words would be great?? I am being seen in London that is why I am really concerned...Thank you so much Traceylouxxx


Yes I remember now - sorry fog brain here! Keep going, a strong and polite letter is a good way forward, an if not the option of perhaps London Bridge as a one off x


Hi sent you a personal message re:sneddons syndrome if you have any questions just ask dont have all the answers but will try

sharon xxx


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