So I have been reading posts on here for a good couple of months and have finally decided to get up the courage to ask for your collective wisdom. Basically, I am wondering whether it is worth me trying to see Dr Hakim or Dr Kazkaz in London. I know others on here have had great success after seeing them and I colleague of mine has also recommended it to me (she has hEDS). If you have done this, how did you go about it? Did you go privately? If so how much did it cost? And were you able to go back to the NHS having got a diagnosis?
WARNING this is a LONG background, but I thought it would be best to explain everything so you know the full story.
I have always been told how flexible I am by people since I was a child. I have always been aware of how unstable my ankles and wrists were but it didn't bother me too much as it didn't cause me any pain. After having appendicitis at the end of my first year at uni I really struggled with fatigue and didn't really recover for a good 2 years. Even though CFS was discussed with my GP at this time it was never officially diagnosed as my GP said I just needed to "get on with it".
I first started this journey of trying to get some answers and improve my quality of life about 2 years ago, at the time I was having recurring digestive issues (low-level constant diarrhea etc) and mild joint pain. The GP did a blood test and noted I had an extremely raised CRP. A month after this I got severe campylobacter food poisoning, which now all my symptoms are being blamed on even though this started before this happened. When my digestive issues didn't subside as expected and my joint pain/instability got to the point where I couldn't walk 100m down the road I was sent to a hospital and got a rushed appointment to see a gastroenterologist. The current theory was I probably had some form of Inflammatory Bowel Disease and this was what was causing my joint pain too. I had a colonoscopy to investigate and it came back totally clear with no evidence of IBD. The gastroenterologist diagnosed post infectious irritable bowel syndrome and told my GP the joint issues must be a separate issue. I have been seeing a dietician to try to improve my symptoms, which has helped to some degree but not solved the problem at all, in fact, it is basically at the level it was at before I had the food poisoning.
A year ago I was given a referral to a rheumatologist. By this time my joint symptoms were slightly better and have stayed at this level since. I can walk short distances without too much difficulty but am considerably less mobile than I should be for a "normal" 24 year old. Writing and typing causes me issues in my hands, my back is constantly aching and I get frequent subluxations of my ankles, knees, hips, shoulders and wrists.
The rheumatologist looked at all my joints on my first appointment and stated I scored 9/9 on the Beighton scale. So I definitely had "hypermobility" but she didn't think this explained the extreme pain I seemed to be getting. Her initial theory was rheumatoid arthritis. She redid the blood tests, which confirmed my CRP was still elevated but had gone down from where it was 2 years ago (and not at a level that would cause investigation anymore) but the test for rheumatoid arthritis was negative. Drawing a blank on what to look for now she did an MRI of my spine to see if that gave any insight. It also came back clean. Lastly, she did an ultrasound of my wrists, which again came back clean. At this point, she decided to draw the line and that I "just" had hypermobility. To solve this she said it will get better with age as I get stiff, I should exercise more to try to lose some more weight and that the rest I had to take due to the issues I had 2 years ago due to the food poisoning and reactive arthritis meant my muscles were weaker and that my joints were not supported enough by them.
The result is she has referred me for physio and told me to continue taking paracetamol (I take it almost every day). The diagnosis she has given is "hypermobility with previous reactive arthritis - now settled".
I have a number of other symptoms that led me to consider EDS, which were thrown out by my rheumatologist as unrelated. These were:
My skin is very fragile (Sometimes the top layer of my skin just comes off and scabs and I have no idea what happened)
It takes a considerable length of time for my skin to heal and when it does it usually leaves a scar
I bruise really easily
I have varicose veins
I get tiny blisters (approximately 2mm wide) on my skin (mainly my hands) that appear out of nowhere and then burst. They take at least 2 weeks to heal (even though they are so small)
I have low blood pressure and feel dizzy when I bend over
I have severe IBS that is not responding to the usual treatments
Sorry for such a long post! ANY advice you can give me would be sooooo appreciated!! Thanks