New to this forum, which specialty is best, or is any?

[Laurentius]

Back around 2004 my GP was not sure which specialist to refer me to first. I was referred to a rheumatologist, and that did not get me very far, very probably set me back.

It may have been my fault, as being a stoical male I let the rheumatologist pull me about and bend me as far as I would go, and I did not indicate when it was painful, because I thought that was all part of the process. As a result the rheumatologist was somewhat dismissive of my symptoms, which were numbnesses, parasthesias and muscle twitching at that time, he vaguely mentioned the word hypermobility and said that it can cause some people problems. It was only after some insistence that I got refered on to a neurologist afterward and I am afraid to say that the first neurologist I saw was no better than the rheumatologist indeed considering a number of things I could easily have made a complaint and sued, considering the way things went later on with notes and referals being lost.

As I have posted in my introduction it was only after later testing that the nerve damage behind my numbnesses was discovered and when you factor in the time delays of the NHS you have more than a year lost in the time it takes from first noticing something and having something done about it, more like two years by the time I was actually operated on.

I then went through two other neurologists, having developed a lot of other psychological problems including OCD as a result of what I consider mishandling by the NHS. I was imagining all sorts of things wrong with me, usually fatal (as they are wont to be when you google) I did manage to put all of that in perspective and put it behind me, however I have consistently complained to my GP's of a number of things and been dealt with very dismissively that there is nothing they can do. In the meantime I just get less mobile and more painful.

I wouldn't say the neurology appointments were a mistake but all they really told me in the end was what I was not suffering from, not that they seemed to understand the anxiety of it all. That seems to me that the trouble with most consultants is they can't see beyond there specialty, and if you have problems that involve more than one, they simply fail to see the big picture. I wonder if at the end of the day I have a short persons nerves in a tall persons body, and that combination causes nothing but aggro.

[nemonie]

Technically rheumatologists deal with Hypermobility Syndrome (HMS) or Ehlers-Danlos Syndrome (EDS), but a great many of them have little to no experience of dealing with HMS/EDS. They often dismiss it as something fairly trivial.
There are a few specialist clinics (generally called hypermobility clinics) dotted around the country,
http://www.hypermobility.org/clinics.php

It is important to communicate with medical bods as to when stuff hurts or goes numb etc, when being examined. They is not psychic after all!

[Laurentius]

I somehow assumed that a rheumatologist was trained to discover things just by manipulating you, and thought that if I complained if something hurt it would be impeding his work. I think the problem with this condition is that you can have a lot of pain without anything to indicate that you are experiencing it as you normally get with injury. I think it unlikely I will find myself being referred to any more specialists in the future, unless it turns out that I do have RA after all. (which is something I do concern myself about because my mum had it) and I thought that the stiffness I have been experiencing lately and the number of joints that are painful would be more likely something systemic like RA, however my GP thinks that is unlikely.

[Stone]

Rheumatology is definitely the correct speciality for dealing with EDS as a whole. However they only specialise in joint conditions! As you've found out, any nerve problems should be dealt with by a neurologist.

If you're still having joint pain then it would be worth getting a second opinion from a rheumatologist - preferably one who specialises in hypermobility, at one of the clinics nemonie linked to above. The recent BMJ article will hopefully have had some success in convincing the last few who see it as no big deal

Stone