Rheumatologist referral, appointments, reports etc

[Itigo]

Hi All

Ladybirdscot, that sounds so frustrating I hope you get somewhere positive soon.

I had an appointment with a Dr last week as my joints have been hurting more and more, and more of them. It is starting to impact on daily life and after I showed my physio some info on HMS he suggested I see a Dr. The Dr has referred me to a rheumatologist (earliest appt is the end of Sept) as he feels I might have arthritis/rheumatic disease of some sort. My Dad has AS and other auto immune things going on which is what made him query me. I have had bloods done and now wait for the results. Should be out today or tomorrow.......He said that if they are negative and the rheumy doesn't think I have anything like that going on, then we will look at the hypermobility more. He said there are lots of rheumaticky things that involve gastro issues as well and said that my hands were abnormally cold for the conditions too.

So now I will wait til September. At least I am getting further each time I see someone! Unfortunately my gastro issues (that I thought were sorted and done for ever) have returned so off to my GP today to get that sorted. On the plus side I am losing weight again - just can't stand the nausea/niggly pain...........

[leashy11]

I think you are well within your rights to ask for tests regarding the gastro issues especially as there are some in your family, that's something I suspect your GP would be responsible for and not the rheumy but I could be wrong, I'd go back and ask about seeing someone for tests for that particular problem and point out all the problems within the family in that area and keep it a separate issue to the HMS.

I think I'd also ask the physio who wasn't any help if she can recommend someone else who might be better informed or ring some and ask them if they know about hypermobility, I know how frustrating the physio angle is because I live in a rural area and I've seen every physio in a 30 miles radius of me and none of them know much about hypermobility except how to spot it. Anything further than 30 miles is way too far for me to travel so I'm stuck with either one who doesn't know how to help or nobody.

The wheelchair issue is something I've seen mentioned on here a few times, I think basically what they are trying to do is keep you up and moving in the hope your muscles will get stronger and control the joints better but without proper help obviously that isn't happening so that's another good reason to try and find a better physio. It's a relentless vicious circle isn't it? I think they try and keep anyone with problems out of chairs as long as they can, I have a friend with MS and they wouldn't let him have a wheelchair until he was actually physically incapable of walking at all because they said the longer he kept going without one the better it was for his muscles but finally, after numerous physios had failed to help him at all and agreed nothing more could be done they gave him one.

I don't know how often we should see rheumys I'm afraid, I've got my first appointment with one tomorrow and my physio has warned me they may well say I've got fibro and leave me to my own devices because of how widespread the pain is and how naff the consultants generally are at the hospital I go to so I'm not really expecting any help either. My physio also agreed with your friend and said it wouldn't be worth asking for a second opinion because it would be with a colleague of theirs so whatever they tell me tomorrow is what I'm stuck with. It's one of the perils of being in a rural area I think with a lack of doctors to go at.

[Spireite]

Ladybirdscot, I do sympathise. I would recommend seeing a HMS specialist, who may be able to help more and then your diagnosis is definite. However, I personally don't really know why rheumys do, and I've seen 3. Other than to confirm a self-diagnosis, I can't see what use they are. For specific problems, you need to see the specialist for that particular bit of body!

I live in a town with a population of quarter of a million and it is a hopeless medical desert. I think doctors have the same bad attitude whether city or a nice rural area.

[leashy11]

Well I'm utterly astounded!! My appointment with a Rheumy yesterday resulted in me finally getting an official diagnosis of HMS after 6 years of probems and he also diagnosed me with Fibromyalgia too! I can't believe I actually saw someone who had heard of HMS but he spotted it right away! I know I shouldn't be pleased to be diagnosed with 2 problems that don't really have any solutions but after all these years of people thinking I'm making it up or just a hypochondriac it's so nice to have a diagnosis from someone they believe! I was so convinced I was going to get yet another consultant who didn't know what to diagnose me with I almost didn't go!

And I want to say thanks to my HMS twin Spireite too for mentioning asking about orthotics in a post somewhere, I've got this Rheumy to refer me for some on the NHS so hopefully I'll at least get something to help my collapsed arches! On the down side the Rheumy has said basically he doesn't see me on a regular basis and it's down to my GP to refer me places for anything that might help but if I get alot worse or think I need to be back at Rheumatology I should just ask to be referred back. It's a start to even be officially diagnosed so I was pleased with the appointment.

[Stone]

Yay

Hopefully you'll now get more of the support you need.


Stone

[ladybirdscot]

Hi All,

Thanks for the comments. Its nice to know I'm not alone but also depressing to know I'm not alone!!

leashy11 - I totally relate to your relief at being diagnosed finally. Its now official that you're not going mad!! You may find that friends and family find it a little harder to get their heads around it so arm yourself with literature to educate them! Unfortunately, the euphoria of being diagnosed will wear off when you go back to the specialist in years to come and they confirm the diagnosis but nothing else!! I sound like a right moaner don't I?! Sorry! I also have fibromyalgia - I hope that's not why I feel I've been 'wriiten off'.

Spirerite - thanks for your comment. I would love to see a HMS specialist. Do you have any idea how I can find one? Should I be going to Glasgow? Any advice would be really appreciated xx

Itigo - you have my every sympathy with the gastro problems. I still haven't been able to resolve it. Unfortunately, my tablets can cause constipation and/or diahorrea etc and I am also taking Champix at the moment (to give up smoking - 8 weeks 'clean' so far) and they can also cause gastro problems. My Mum has irritable bowel syndrome (similar symptoms) and kidney cancer (her stomach is very bloated, amongst other symptoms) and has also had other gastro problems. I may be being paranoid but I don't want to ignore symptoms that may be caused by something other than my tablets. I'll have another chat with my GP and see if I can change my tablets to see if my symptoms go away and if they don't, I'll ask him to check for other possible problems. Thanks again and good luck in September.

[leashy11]

Well that popped my "finally been diagnosed bubble" didn't it?! Actually it hasn't quite, I've been to see a GP at our local practice today for something else and been astounded yet again when she had actually heard of HMS and understood lots of the problems associated with it! My official diagnosis finally means GPs will discuss these issues with me so it's still a good thing to have got the diagnosis even though there are limits on what can be done so I'm not totally deflated by the above post!!

[ladybirdscot]

Leashy11 - I am SO SO SORRY!!! I didn't mean to upset you at all!! I will be more careful with my wording in future. Please accept my apology - I feel terrible! I am not at all the sort of person who wishes to offend anyone or upset anyone.

[leashy11]

Ladybirdscot you haven't offended me at all, don't worry! I see where you're coming from completely and no offence taken I swear!

[sueiz]

Hi,

I've just read back through the last couple of pages.

Ladybirdscot, I hope you get your mind put at rest re: the bowel problems & your family medical history soon xx I got the same comment from my GP "no point referring you, they can't do anything anyway" How do they know that if one, they've never heard of HMS & two, they're not the expert??! I know it's a long journey for you, but I would push to get seen at the specialist clinic in Glasgow; at least then they can point you in the right direction(s) for the help you need, & get more sympathy & understanding.

Leashy, thanks for the pm, & great to hear there's some hope in visiting Lincoln County!! I live in hope of following in your footsteps soon. Talking of which, there's a fantastic lady at the Lincoln Podiatry Clinic (NHS!) who does biomechanical assessments, & she's the one who's picked up on many of my joint problems, not just feet, and also the only one to even mention the Beighton score; mind you she went a funny green colour when I showed her my party tricks lol!!

What a wonderful, supporting, caring, understanding bunch you all are on here - I bless the day I stumbled across the website!

Sue

[Hazybee]

Hya Paige,
so glad you got your diagnosis lets hope your GP is a little more understanding the worst thing about this condition is the medical profession's attitude which makes you feel worse! I really hope you don't have these problems but if you do were all here moaning about the same things
We are intelligent human beings and we NEED to be treated as such!

[ladybirdscot]

Thanks for that Sue. I'm going to talk to my GP at my next appointment. (I have to be referred by the consultant rhuematologist but I think that my GP can write and ask him to refer me rather than make another appointment with him). Frustration can be very annoying, particularly when you're in pain!

leashy11 - Phew! Friends again!

[FIN1]

Hi Everyone

My gp referred me to Professor Ferrell at the Royal Infirmary after me asking her too(she is useless and I know more about HMS than her). I'm not sure how long I will wait or whether it's going to be a waste of time. I don't expect him to do much but it would even be good to ask him questions that noone else can answer. I read Laineys message so I'm not too sure.

lorna

[Lainey]

Oh I am sorry...I didn't mean to put you off!

It may have just been a bad day when I was there. My appointment was for half 12 I think. I got there slightly early and I didn't go through to the nurses room for about an hour. They went through some questions and asked for a urine sample. Then I was told to wait for the doctor which was about an hour and a half. I already had an HMS diagnosis from Ross Hall and this was on my medical files. I was referred to the Royal Infirmary by university doctors as they thought it may help with pain management.

I was with the doctor for all of 15 minutes. He simply said yes, you have HMS. I replied I knew that and I was looking for some pain management tips or stronger meds or something. He then said that wasn't his department and they'd organise another appointment. I was then sent to have blood tests which had already been done by my GP and by my Rheumy. I got my repeat appointment which was 7 or 8 months in the future. I was a bit upset as I felt like I'd just been left to get on with it for 8 months.

Unfortunately I was unable to make the appointment due to university commitments and I asked for a different time. I was told he only worked on Wednesdays and that either I see him or make do. But given it was exams, I couldn't miss them. Due to my cancellation, they refused to make anymore appointments. That said, I have a fantastic GP who has obviously done her research on HMS as whenever I am in there, she suggests alternatives to medication as she knows I hate taking pills!

That's my little story of my experiences at the Royal Infirmary and my Rheumy said he used to work at the Royal and said it was horrendous. LOl. But it has to be said that my experience was only one day and they were very busy that day. So it may have just been a one off. There may be other bendy people on this forum who have had absolutely no problems with the Royal.

I apologise for the essay but I hope it helps!
Lainey

[FIN1]

Hi Lainey,

Thanks for the reply. I actually got the appointment through to see him on 25th August,it arrived this morning. Thanks for the info. I was diagnosed by a rheumatologist at my local hospital(Wishaw General- I live in Motherwell) but she wasn't very good and just told me it's really common and 1 in 10 people have it. I was given a booklet and sent away. I didn't really question her at the time as I had no knowledge about the condition. I have learnt most things from googling it, my dr told me she would have to look it up!

How do you manage at uni? How do you manage all the stairs in the building etc. That would kill me! My SI joints are knackered and pelvis since having my son 16 months ago and I can't walk very far. I was totally fit and normal before I got pregnant and then it all went wrong. It's all happened really suddenly for me so it's hard to get used to being like this now and trying to look after my son when my husband's at work.

I feel like I'm the only one in the area that has this,noone I know has ever heard of it and neither did any of my family and friends etc. It's good to chat to other people like yourself who know and understand what pain you are in everyday.

Do you manage ok doing your work for uni? Do your hands give you any problems? My hands are really sore plus knees,shoulders,jaw and pelvis! I sound like a right moaner!
I get acupuncture from another gp in the doctors surgery every 2-3 weeks so that eases the pain a little.

take care,talk soon
Lorna