Could anyone please give me some advice on hughes syndrome and the link with MS?

[charlie1234]

Hi Everyone. For the past three weeks i have been falling into things, having tremors, numbness and pins and needles in my arms and feet, headaches that wouldnt go away although medication was taken, visual disturbances, having the feeling of being drunk, trouble walking like i was drunk, severe abdominal cramps, memory loss(cant remember times and dates, peoples names and whats been on the television, cant do simple crossword puzzles, words getting mixed up), aches and pains like a feeling of flu like symptoms but no cold, anxiety, tiredness and fatigue, and slight bouts of earrache that last seconds but are sharp and very painful. My GP took bloods but not for hughes syndrome as he had never heard of it until today when i went for my results. Over the years my father passed away of pulmonary hypertension of the lungs, and in my case i was told when i had my polycystic ovaries(cysts burst under anaethestic) was told by my gynaecologist that i was able to conceive but not carry a child, had reaccurrent migraines in my 20's and then they returned with avengance 3 weeks ago to the point where i had to have an eye test because of a stabbing pain in my eye, and also taken off the contraception pill because it was causing DVT. My GP has referred me to see a neurologist and has said today that there is something inflammed in my body but he doesnt know where although i do suffer with spinal osteoarthritis. Is any of you who have this syndrome diabetic, because whatever it is thats causing these symptoms has pushed my blood sugars through the roof. As my GP has no indication of this syndrome he is looking through everything, but has said that MS is very difficult to diagnose as there are so many symptoms and illnesses that are linked but its not necessarily MS, and because of this he is dumb founded and is still pursuing other things and the more blood i get taken from me the more tired and lethargic i feel. How long do you have to wait before your diagnosed with the correct illness as at the moment im feeling like a pin cushion? Oh and before i forget my cousin has lupus which attacked her kidneys so badly that she had to have a transplant. Do i need to keep going through all of these symptoms and tests until they find out what the problem is? Why is MS linked to hughes syndrome? Any advice given to me would be so much appreciated so thankyou all.

[charlie1234]

Thankyou so much for your help and advice. You seem to know alot about this condition. What did you have to go through to get the support you needed. im presuming that you have the syndrome. My neurologists appointment isnt urgent, infact is june 11th at 10am so my GP hasnt or doesnt think that its that important or serious. After this morning i may have changed his mind as its so new that he hadnt even heard of it and hes the boss so what does that tell you how much of a struggle im going to have getting things sorted?x

[MaryF Administrator]

Hi there, you can have specific blood tests done to test for Hughes Syndrome, and we also have many medical papers you can print out from our site. MS Hughes Syndrome can cause very similar symptoms, which is why there is sometimes confusion with the diagnosis. I do hope you can tell us where you are, this way we can help you show your GP where to send you, for the right tests. Best of luck Mary F x

[charlie1234]

im in malton north yorkshire. i cant afford to go private as im on ESA benefit due to my spinal osteoarthritis.

[charlie1234]

how many people in this country have this hughes syndrome. is it those of them who have registered on here or is there more. Its just GPs have never heard of it and my father had these symptoms but that was 1985 to 1991 but this syndrome wasnt found, and yet it supposed to be fairly new.

[lizzybabe]

Hi Guys! I have also been to my GP and told her about Hughes Syndrome and she wasn't even knowledgeable I also told her about my Mum and sister who have died on Brain Bloodclots also my sister who is still living is on Warfrin for life through bloodclots I have also had Dvt and PE and lots of other things with circulation migraines zigzag headaches numbness in hands and arm and she has no concern does she want me dead and then they find out what was wrong with me because of negligence i had a Dvt and PE and when i was coughing blood still said there was nothing wrong with me until i was collapsing allot. And was hospitalized for two weeks. 15 mg a day Warfrin I am really sick of having to prove there is something wrong with me. This is 3 yrs on and I still don't know what is wrong with me memory in a fuzz most of the time. I have Laryngitis feel like i am fuzzy headed My eyes feel strange a lot dry eyes out of focus and blurry dry eyes. You have to be dead before they listen and I am sick of all this. Fell like a hypochondria going to the doctors.

Sorry for going on but this has ruined me since I had the Dvt and PE

They are sending me back to Neurology

Thank you for taking time to listen to my miserable story.

[lizzybabe]

Thank you for your help I am in Southport Merseyside with the Triinity Practice Hoghton Street PR9 - 0PQ Any help would be appreciated very sincerely x

[charlie1234]

heya. Thankyou hun. Will do. Ive had more bloods taken this morning, but because it was with the blood nurse i couldnt very well say to her 'Oh can you ask Dr.Lynch if he wants to add this hughes syndrome to the blood testing?' as i dont know as yet if hes read up on it. I just got told not to look up on the net although i didnt find my symptoms first and went with what i was told. I got the results back that were positive and because it revealed that my blood was sticky and it was my partner who typed in the words 'sticky blood' and it was there where he found the HSF web page but i found your site yesterday thats why i asked those much needed questions that i wanted to know the answers to who come from people who are professionals and are going through it. If i do have this hughes syndrome then i want to catch it early because i dont want to end up dead in 5 years like my poor lovely dad did. Bless him because they didnt know about this he was put on warfarin and just deteriorated very quickly in 5 years to once a fit healthy man to a total shell of his former self and ended up on permenant oxygen wherever he went. I watched him and from some of the messages ive been reading from other sufferers who are suffering terrible with haemorraging and coughing up blood clots and GP's not knowing what it is i want to catch mine early like i said so i can live a full and happy life not like my poor father, if you can see my meaning. I just cant understand after so many people are suffering badly with this and have done for years who are still alive, and my father dying like he did in 1991 then that 20 years ago plus how is it just being diagnosed now and GP's still dont recognise it because its been never heard of as its so new. What im saying is the symptoms have gone on for years but the diagnosis hasnt. I mean what did they do before finding this let people die until they found out what the cause was and then gave it a name, what? It makes me so upset and angry because if this is the case then my dad wouldve lived for many many years with it as long as he was treated properly, but sadly it was left too late.xx