Tanzanite Posted September 17, 2007 Report Share Posted September 17, 2007 Flop: I read on the hypermobility syndrome website he had now retired! He is such a nice man. He came all the way to me at my home from London (few hours drive away) because even my local specialist wouldn't come and see me , it was/is impossible for me to go out. He said my stretchmarks were the worst he'd seen in EDS (over an inch wide!) and he took photos of them! I always wonder if they're hanging up on his office walls! lol Quote Link to comment Share on other sites More sharing options...
persephone Posted September 17, 2007 Report Share Posted September 17, 2007 Hello Becca, It's hard to rely on one team who are swamped with a backlog of referrals. The people who helped me most were in Scotland, not London. although Prof Mathias initially diagnosed me.There are no rheumatologists at Queens Square, which is a neurology specialty hospital. They are in fact at University College Hospital, and I'd think that if Professor Grhamae has retired (thought I hope not- the dude is a legend!) then it would be by Dr Hakim, who also specialises in hypermobility, and is lovely.It surprises me that youcan be given a diagnosis one day, only to have it recoked the next, but I know another lass who used to come to these boards who had exactly the same thing happen- and under Prof Mathias, too. It's also worth noting that if you are deemed as having a mental health difficulty, your notes can be withheld if you request them, because they can be seen as 'detrimental' to your mental health.What treatments have you tried ? The best one I've had is EPO injections, but note that they weren't given to me by London. I got given them by an electrophysiologist up in Scotland. Wishing you well,P Quote Link to comment Share on other sites More sharing options...
Becca_7706 Posted September 18, 2007 Author Report Share Posted September 18, 2007 Hello Persephone,I mentioned in another post above that I'm not so sure Professor Mathias is saying what they are saying he is. But because my notes are being witheld from me I have no way of knowing for sure. It was Professor Grahame I saw when at Queens Square he is involved in research with Prof Mathias regarding EDS and Autonomic problems and is kind of attached to Pro Mathias via that (I think).I'm sorry to hear that someone else has had the same problems as me, but in a way it helps because I don't feel so alone. I don't have anyone else to treat the autonomic problems (everyone local says I'm making myself ill) so Prof Mathias is the only hope I have. I thought I was refused my notes because of my mental health which means I am at the mercy of these people who are telling me I'm not living in reality and making myself ill which is making my mental health even worse and is really Anyway my treatments are: *drum roll*Propanolol (for panic attacks that were causing the blackouts even though I wasn't having panic attacks because they were diagnosed as such and I was on it for over a year and it caused circulation problems and worsening syncope but I wasn't allowed to stop it just because of that - I hated it which I'm sure you can tell )Midodrine (which turned my legs blue, swell and made them cramp continually - even when I was taking half the smallest dose this isn't an option to re-try because of my hand troubles mean I cannot cut pills up)Cipralex (SSRI which made my syncope much worse and I stopped it after a few days because I live alone and it gave me hullucinations as well which were frightening)Gabapentin (gave me hullucinations and didn't touch the pain it was prescribed for at all)I keep myself hydrated (I drink an awful lot!!) and carry a portable stool with me so I can get around and be able to rest easily when required. I only have cold baths and showers (because the heat makes it worse), take a stool softener because otherwise I blackout when going to the toilet and am taking a lot of painkillers for the RSD/EDS pain. I guess right now my problem is pain as the weather is getting colder I'm finding it hard to walk because of my foot (my blood pools in my right foot and has done for years and now I'm getting pain with it too) and my hands are painful and spasm (the left is worse than the right but the right is getting worse too).I'm not too sure what Prof Mathias could do, his registrar suggested midodrine which is the med of choice for someone with my reaction on tilt test but because of the problems I had they are unsure - typical me really!Becca Quote Link to comment Share on other sites More sharing options...
lizb Posted September 18, 2007 Report Share Posted September 18, 2007 Hi Becca, sorry to read you have had such a dreadful time. Someone commented about care in the UK, I can't comment on other places but I come from Scotland and the care I am receiving is amazing. It took 3 years to get a DX, which was really down to me having a horrendus family history of heart problems and that was the route my GP took. However, I was transferred to a Cardiologist in March 06 and I was trying to explain all the various symptoms to her, it was when my husband said " she goes grey" this appeared to be the trigger for my Cardio and I was then I was put through a series of test and was DX in Aug 06. Since then she has put me through every test you can think off and I was eventually put on Fludrocortisone in July 07 and this has made a such a difference to my daily life. I still have POTs symptoms but for most of the time I cope well. Like someone said - it is real illness, but like any illness you have to think positive and focus on what is good in your life. I also know the feeling of grief, having lost my mother and youngest brother very suddenly within three weeks in 2004 but remember even people without any type of illness could suffer mental health problems after losing a family member or in your case a close. I also know what if feels like when medical staff say " it's a panic attack or your very anxious" who wouldn't be after have a POTS attack!!!! or any type attack. Just remember you're not alone and the people on this site are very supportive and although I don't post very often, if I have a problem I would not hesitate to ask members for help. Take careLiz B x Quote Link to comment Share on other sites More sharing options...
persephone Posted September 19, 2007 Report Share Posted September 19, 2007 Ditto with Liz- the treatment in Scotland is far superior. THere are now consultants who can deal with POTs in Glasgow, Edinburgh and Dundee. My specialist in Dundee gaveme my life back Quote Link to comment Share on other sites More sharing options...
Becca_7706 Posted September 19, 2007 Author Report Share Posted September 19, 2007 Shame I don't live in Scotland!Ditto with Liz- the treatment in Scotland is far superior. THere are now consultants who can deal with POTs in Glasgow, Edinburgh and Dundee. My specialist in Dundee gaveme my life back Quote Link to comment Share on other sites More sharing options...
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