On a medical merry go round, any support?

A question about : On a medical merry go round, any support?

As to the title really. Just seen another specialist who has given up and discharged me to the care of another department.

I have multiple diagnoses of rare disorders but they all contradict each other in terms of treatments and I have some strange symptoms that don't fit into any of the diagnoses but affect me really badly.

This has been going on for over 15 years (and I'm not even 30), I've been in every hospital in Glasgow plus a few in Edinburgh. I've seen neurologists, cardiologists, electrophysiologists, neuro-ophthalmologists, gynaecologists, immunologists, gastroenterologists, endocrinologists, urologists, physiotherapists, occupational therapists and now I'm off to see a rheumatologist.

I take 30 tablets a day, I'm on oxygen, need a bi-pap machine to breathe at night, had a heart transplant, am stuck in a wheelchair most of the time and sometimes it gets me down.

When I speak to my GP they just click buttons on their computer and offer to send me to a psychiatrist but the last one I saw said I'm just isolated and there was nothing he can offer.

I have a great family and a supportive partner, a group of friends that are great for listening to my moans, but I feel so different so much of the time. I want to meet people like me or talk to someone who at least understands my situation and not yet another specialist who talks to me for 15 minutes, orders a test and sends me away to see in 6 months. Nurse practitioners are nice but only ever want to talk about their special part of what's going on and not my overall problems which is frustrating.

Is there any support for people in this situation?

Best answers:

• From personal experience support seems to be everyone has their own little corners and nobody does the big picture. However I've found my community physio gets it and goes above and beyond her role as long as I don't tell anyone she does it.
  Do you know any other patients with same condition? It could be worth looking at any contacts that way as there is no one that understands like someone with similar issues. Even the rarest of conditions usually have a website and and contact details that may be worth you contacting.
• The problem is that I don't have a name for the overall condition, just a few names for what causes some parts of the problem. I once went to a myasthenia gravis support meeting and I had very little in common with anyone there even from a medical perspective so that didn't help much at all.
• You need to get in contact with someone higher up, write to local GP's and so forth.
• I'm afraid it will always be a problem if you do not fit the expected boxes. I have asthma but am brittle with several other add on aspects. Brittle asthma is a rare and dangerous type that is totally misunderstood. As such I do not fit any of the boxes for help or support.
  In my area age concern have taken over most of the community support but as yet I do not reach there criteria.
  If you have community matrons in your area they may be of help. They would have helped me a few years back but have now been withdrawn.
• You poor thing i know that feeling well, i think they see me because there intrigued by someone who has both di george and ehlos danlos, then discharge me as there is nothing they can try.
  Im fed up of being in a wheelchair and in pain.
• Do you need more support from the perspective of coping with how your illnesses make you feel, or trying to understand and deal with your symptoms better? If the first, could a counsellor or psychologist help rather than a psychiatrist (who deals with MH illnesses as a doctor not a therapist). Ideally, you would want to see a health specialist (it is an official sub speciality of psychology) who should be able to help you cope with the restrictions that comes with your health.
  If what you need most is better understanding of your symptoms, could you try to pinpoint which condition is most associated with the symptoms that cause you the most trouble and see how about joining a group for this particular condition?
• I'd say the first one but my GP says that I already take anti-depressants (for the neuralgia - I don't have depression) so doesn't see what referring me to mental health services can do for me.
• My GP seems to think so.
  My neurologist seems to think that i should see my GP more but whenever I go I feel like a nuisance so I only go when they send for me now.
• Is there not a sympathetic GP in the practice? You should never be made to feel like a nuisance. GP's ought to treat everyone with repect and understanding.
• Just wanted to add that I hope you can see a more supportive gp and get something in place to help you. I am very lucky to have a great gp and CPN but it took a long time and lots of false starts. Good Luck !!!
• I feel stuck in a rut too, having more than one thing wrong, gp does't know which box to put me in, if there is something unexplained oh well it must be an MS thing, well most times it isnt, its OA then, well no its not, currently have tennis elbow (gp thinks) but then my hand swelled up so off for xray and bloods, xray clear white blood count up a little so perhaps not arthritis in my hand (although in knees and hip) but i take drugs for ms which lowers white bloods so the blood test had false reading, and that's it, dumped again no further investigation, its my dominant hand, in pain, driving to work and working is aggravating it.
  Although i have a bloody good bunch of MS friends now, this does help, as for the rest meh
• Have you talked to your local health board/trust?
  They have the overall BIG picture of facilities and pathways and services in the area you live and assist in things where one specialist refers to the other and the other refers you on to someone else because it not their expertise to deal with it. The local health trust or board should be able to look into who you should be with as in specialist wise.
  I found that contacting my LHB put in the right direction with my MH and my brittle asthma.
  Like previously said the type of asthma is mis understood and often overlooked, and it happened with other conditions even with serious life changing ones, I would contact the health board under a complaint due to lack of access to treatment and facilities and see how they respond back usually they call you by phone to discuss you issues and then investigate what is going on and where you should be in the system rather than different department enter you into the oblivion of nothingness and confusions.
• Not sure where you are, but in a lot of areas, you can self refer for IAPT services, where you might find better psych support in coping.
• I've tried googling IAPT and my local health board but nothing comes up. Is it maybe an England only thing?