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Posted by -Phoebe-Louise- (U9339098) on Tuesday, 14th August 2007
People with Fibromialgia might know someone good too because a lot of doctors that take an interest in one seem to take an interest with the other.
I'm really desperate, I've exhausted myself scouring the internet with no luck. My GP wont help me. He doesn't know even the most basic things about ME. The only thing he's ever done is reluctantly sent me to a neurologist a year ago who admitted to not knowing much about it either. He did no tests, suggested no treatments other than putting me on an anti depressant that gave me nasty sideaffects. MY GP wont find me anyone else or make an appointment to see the same neurologist again. If you know any Neurologists, Immunologist or whatever that can help I'd be really grateful. I'm from the West Midlands (Wolverhampton) but if you have an actual ME specialist or doctor that understands it, even if they're a private one I would be willing to travel. I'm coming up to my dreaded 11 year aniversary of getting ME and been a member of the 25% a lot of it. I'm currently almost entirely housebound but I don't have anyone but a pig ignorant GP and a slightly peculiar accupuncturist. The feeling of no one wanting to help me is really getting me down emotionally, I feel more frustrated, angry and hopeless everyday.
Posted by sully_me (U8185037) on Tuesday, 14th August 2007
Can't really help you on finding specialists (not much luck myself so far), more just offering a bit of solidarity!
I am in process of trying to get a referral to somebody in Dundee but I've got no idea if or how it will ever happen - I'll let you know if I find somebody worth approaching.
Posted by Gossamer (U9364401) on Tuesday, 14th August 2007
There are two private doctors that I know of who treat those with ME. I really hesitate to give you this info, as I know it's very possible that nothing good may come of it for you, and there is a cost financially, and in physical and emotional energy.
The first is Dr Andy Wright. His specialism is Lyme Disease. He diagnoses many who have previously been diagnosed with ME as suffering from chronic Lyme. I should say first up that this is a controversial area, and that many medics disagree with the thesis on Lyme and ME. However, other doctors are in agreement with him, and chronic Lyme is much more high profile in the USA. If you ask your GP for a test for Lyme, he may give you one, but this test is discredited by the chronic Lyme camp, so you'd have to consult Dr Wright privately. He is based in Bolton, Lancs. He does face-to-face and phone consultations. I have been seeing Dr W for about 3 years, and have had improvement in migraine, but not in fatigue. However, I know of others who have had greater improvement under treatment for chronic Lyme. His clinic, the Complete Fatigue Clinic, is tel 01942819301.
Dr Sarah Myhill is another ME doc and has a wesite, drmyhill.co.uk. I've been consulting her book and have found it quite useful for management details like pacing and sleep. She advocates many supplements, detoxes etc (and testing for Lyme), most of which I haven't tried. Again, her treatment is disputed by some docs, and supported by others. But then, when it comes to CFS, it's not like the 'mainstream' attitude to ME of a.ignoring it or b.graded activity/excercise and CBT is working. No treatment of ME uncontroversial!
Both these docs write for the Action for ME magazine; InterAction, if you know it. They are both adamant that ME is a physical disease in basis and they treat sufferers with the respect they deserve. I know this attitude is scandalously rare.
I'de HATE to send you on fruitless missions here. But I decided I should leave the decision of whether or not to look into them to you. I know the feelings you describe: frustration, anger and hopelesness. Even if you feel like no one wants to help you, I promise you that I'd LOVE to!
Good luck, Lizzie XX
Posted by -Phoebe-Louise- (U9339098) on Wednesday, 15th August 2007
Thank you for your help. I don't blame you for being hesitant, if it were the other way around I'd be a bit worried about accidentally giving false hope because we all know how horrible it is and how common it is with ME because it's such a vague diagnosis.
I'll look into that lyme thing and if it seems relevant to my experience of CFS I'll see about making an appointment.
I did see doctor Myhill when I first got ill. She got me the use of my legs back so despite some of her more wacky ideas I'll never have a bad word said about her. I probably should have mentioned her but the problem is her website says that she's not making new appointments at the moment. I may call her today actually and see if I could get a phone consultation orsomething.
Thanks again Lizzie
Posted by Gossamer (U9364401) on Wednesday, 15th August 2007
As she can't take on any new patients at the mo., Dr Myhill has put the details of her treatments online and in a book (£10). I got the book. It details the foundations of her treatment for ME, eg 9 hrs sleep a night, pacing, good diet and supplements. (She recommends testing for Lyme early on.) Once you get that done, you move onto 'level one', etc. So, you can do what she says to do, even if you can't speak to her. I follow some of her advice.
If you saw her 10 or so years ago, she will have lots of new info since then. One big area she's doing now is mitochondrial dysfunction. Dr Wright is doing this too. I took the recommended supplements for this and felt no different, but I know of people who found it useful.
Posted by sleepy4444 (U7573450) on Wednesday, 15th August 2007
Hi Phoebe Louise,
I have had M.E. for ten years now. The only doctors I have found at all helpful are:
Dr. Williams at St. Thomas' Sleep Disorders centre (NHS)
Dr. Michael Gross at Bupa Gatwick Park (Private and expensive)
Prof. Luxon at Neuro-otology clinic National Neurology Hospital (NHS)
All three are neurologists. Dr. Williams treated me for hypersomnia with modafinil which is effective. Prof. Luxon runs a balance clinic and they do quite good physio and occ. therapy. Unfortunately I don't know if this would be any good to you as it is in London.
Dr. Gross is very sympathetic and has had success with a number of patients with severe M.E. However I could only afford to see him very briefly as he is private and expensive.
I don't know if that has been helpful at all. I wish you the best of luck!
Posted by Sueeus (U4286026) on Sunday, 19th August 2007
Haven't read other comments so this may have already been mentioned, or you might know of it already as you've had ME for so long, but could check out the ME Centre at www.nmec.org.uk. It's a private fatigue clinic, but need a GP referral. You could ring them and ask for an information pack for your GP to read through. I haven't been there myself, but both Neurologist Professor Findlay and Immunologist Dr Mitchel were recommended to me by 3 different people, including a doctor who had ME. Sometimes your local PCT will fund it, although I wouldn't get my hopes up about that. I may go there myself at some point as my Neurologist on the NHS who had some knowledge of ME, has recently upped and left after 6 yrs and new locum is clueless.
Posted by WheeledTraveler (U3343445) on Sunday, 19th August 2007
I'm not in the UK, but there are a bunch of people on the But You Don't Look Sick boards with ME and similar conditions, some of whom have found very good specialists in the UK. You might want to check over there and ask.
Posted by ajl338 (U1934444) on Monday, 20th August 2007
I saw Dr white at Barts hospital in london, he works at one of the 'special ME' centres.
The best help i actually had was from a physio at the local hospital who knew nothing about ME but was willing to work with me to decide what i could and couldnt do
The think about ME is there is no cure for it or any magic drugs. I got fed up with seeing doctors as they cant cure me but it does take a lot of energy to get there and back and is emotionally draining.
Posted by allgiggles1984 (U1914332) on Friday, 22nd February 2008
Definitely Dr Wright at the Chronicfatigue syndrome clinic in Bolton. agree with Phoebe. YOu will hopefully see some light at the end of the tunnel. NHS is shite at some stuff sometimes. they have no money for extensive research. which is sad really.
Posted by DaisySair (U1878583) on Friday, 22nd February 2008
YOU are your body's best expert.
overdoing it leads to payback, so you need to know when your limit is and stop before then.
pain management works for some, whereas others have such a drug intolerance it's best avoided.
it's about learning YOUR ME. it's soo different for everyone.
I've had ME for over 14 years, because it wasn't diagnosed early on (MS diagnosis initially) and I pushed myself waaay beyond my limits, the best doctor I saw was a consultant who was then working from preston, (glasgow previously?-can't remember his name, he was petrified of cats..) who told it to me straight. He thought I may improve a little, but not a lot and to get on with what life i could (without overdoing it). -like you am mostly homebound (my preferred terminology)
seen tonnes of other neurologists pre diagnosis most of whom were great.
Posted by Yvette (U5736448) on Friday, 22nd February 2008
A friend with fibromyalgia went through several years of hell, being undiagnosed, disbelieved and unsupported.
Until he had an appointment at his local Pain Clinic and the doctor there recognised what was the matter with him.
I don't know the name of the doctor but it might be worth your while getting a referral to your local Pain Clinic, and at least it will be free.
Posted by wheelz_of_fire (U6781814) on Saturday, 23rd February 2008
Ask your GP to refer you to a Rheumatologist. Neurologists know nothing about FMS. A Rheum will be able to detect how many tender points you have, and will be able to help you with pain management.
Hope this helps...
Posted by Naomi (U7334001) on Saturday, 23rd February 2008
Actually, although Fibromyalgia has always been classified as an area for rheumatologists, there's increasing evidence that's it's neurological, in the same way that ME/CFS is (although probably with different causes). While it's true that neurologists don't know nearly as much as they should about FMS, in the future it may become an area that they specialise in. Rheumatologists don't always know much about FMS either. I saw several who were all completely clueless about it.
Phoebe Louise, if you ever get the chance to go to London or Bristol, Professor Davies runs FMS/CFS clinics in both places. He is a rheumatologst and neurologist, and a leading expert in ME/CFS. He's using off-label treatments that are having some major successes for some people, based on the latest research that's coming out of Europe and North America (where there's actual money for research into these conditions, unlike here). If it hadn't been for him, no one would have bothered trying the one medication that I can take that has a positive effect on my pain (in my case, this is pregabalin, which works on the neurological causes of pain). With other people he has tried, and had success with, more advanced neurological approaches like anti-Parkinsons treatment. I couldn't cope with that as it does put your system under strain. But it absolutely helps some people.
Posted by pezdamona (U10906138) on Saturday, 23rd February 2008
Know how you feel, only had ME 7 years but fed up with it. I've don ethe usual nuerologists,cbt etc but nothing has worked yet. I have never been referred to pain clinic tho, is it worth a visit or will they just offer me more drugs? my GP is lovely and supportive if i come up with ideas but has no knowledge of ME. How about asking to change GP to a less pig ignorant one?! good luck and let me know if you find anything that works!
Posted by Penthesalie (U3956249) on Sunday, 2nd March 2008
Hi Phoebe Louise!
Clocking up my 29th year with ME and in the 25% group too. As luck would have it my GP's wife has the same condition so he's very well informed on the subject. Have you tried looking at Jodi Bassett's site 'A Humming Birds' Guide to ME? She also provides a monthly newsletter.
Posted by U11722581 (U11722581) on Wednesday, 23rd April 2008
I have been suffering for a number of years, my blood tests have all been negative on numerous occasions except once last year when the doctor said I had a Thyroid problem which would account for some of my symptoms. I went to see the doctor at BUPA they said that there was nothing wrong with my thyroid after they redone the blood test.
I have since seen another doctor at BUPA who has said I have second stage depression and that I am giving myself all my problems.
I need to get a diagnosis in the first place and I thank you for passing on Professor Davies who runs a clinic in Bristol.
Posted by PaleBeak (U9820439) on Saturday, 21st June 2008
I'm in a similar situation. ME diagnosis 20 years ago at the National Neurological Hospital in London, Now my GP (who while sympathetic, seems to be convinced it's a psychiatric illness) needs to find a specialist who'll convince my employees that I'm no longer able to work. I dread to think who he'll come up with, I gather there are some real monsters out there still!
Has anyone any experience with the King's College CFS Unit?
Posted by panther1971 (U13857986) on Wednesday, 4th March 2009
I have M.E/CFS and i'm also from the Wolverhamton area. My GP sent me to New Cross to see a neurologist called [Personal details removed by Moderator], who may i say is fantastic. He is very understanding of the illness and has sent me for numerous tests, so far i have had a Brain Scan, various blood tests and a CT Scan. Get your GP to refer you to him. If he won't change ur doctor.
Posted by cremeteaz (U10020648) on Wednesday, 4th March 2009
ME Connect on 0870 444 1836 may know of ME specialists in your area, or be able to give you details of someone who would know. They are open every day from 10-12, 2-4, and 7-9.
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