ADMIN NOTE:If anyone does know of a private GP, please send their details to Candace privately via PM, as we don’t allow naming of doctors (unless they’re really very well-known, like Prof Giovannoni of the Barts MS Blog).
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Hi My name is Emma and I am 37. I have 3 children. I have been diagnosed with Fibro since 2004 and Ehlers Danlos since 2013. I have had severe symptoms, starting with double/cloudy vision since April 2014, progressing with pins and needles, numbness, bladder weakness, memory loss, falling over, and other things. getting worse, then going away and then coming back again worse.
I went to the eye emergency clinic in 2014, and was told I need to see a neurologist and they would write to the GP and ask for me to be referred. Long story short the old GP said they did not receive this and I eventually have become house bound due to the symptoms.
Before Xmas 2015 I got a copy of my medical records and there is a letter from the eye hospital to the GP asking for further investigations, I have changed GP hoping for a new start. I went there today which took a lot of effort, to be told it can take 4 weeks maybe more for medical records to come over, I have to go back next week for numerous blood tests, I now can be waiting weeks, with double vision, eye pain and the pins needles etc again.
I am looking to go the one of the hospital neurologists privately, then ask them to see meon their NHS clinic for tests/scans etc? Has anyone had experience of that?. I can afford the consultation, and maybe some tests, but I think the MRIs would be very expensive.
Or should i go to a opticians or a and e to ask to be referred, as its so hard to cope with these symptoms. Or is it only a GP that can refer to a neurologist?.
any help you can give me would be much appreciated,
Thank you Emma.
Hi All,
A big thank you to all those who contributed, here and elsewhere.
The total raised is £404.39. Which is far beyond the £100 that was the original target.
My place of work is having a dress down day on Friday 26th, in aid of the MS Society, prompted by my cycle ride and for me asking, so hopefully there will be additional money to be added.
Thank you again
As some of you know, I have decided to do something foolish and cycle from London to Brighton.
i am doing this for a good cause, namely to benefit those with Multiple Sclerosis.
Any donations you kindly make will go to the MS Society, who along with the MS Trust do great work.
Those who are waiting for photos, there is a selection on the donation page below.
Have a look and while you are there, click donate. I need to raise a minimum of £100 before I can even attempt the ride.
Thank you very much.
http://www.justgiving.com/PaulFoster129
If you have an overactive bladder (OAB) with your MS, you may be interested in a research trial at the Whittington Hospital in north London. In some people with OAB symptoms, the urine shows signs that the bladder is inflamed, and although infection is a recognised cause of such inflammation, routine tests for infection are often negative. Some research has raised doubts about the accuracy of standard tests for infection.
More details are shown on the attached pdf file.
Hi, I think I'm getting to the point where my symptoms are bothering me too much to wait around for the gp to refer me back to a neurologist. I have a rheumatology appt mid August, which will no doubt be followed by numerous, seemingly pointless tests, before my doctor will consider referring me to a neurologist. I don't want months and months of waiting and worrying. I feel I need to be seen now.
I've emailed a hospital with a good ms neurology team, which I found on this forum. I haven't heard back yet. I was just wondering if anyone could enlighten meon the best procedure to get a private consultation. Should I just wait or phone the hospital, or do most people get a referral through their gp?
Thanks again, Jan.
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