What's the point. Appointment waste of time

peskie_pixie

Hi
I'm sorry to hear you had such a rubbish weekend. (and week)

I know from personal experience how patchy diagnosis on the NHS can be. Although i don't have the same health problems as you, I've had to ask for 2nd opinions in the past, but it's so hard when you feel unwell and dispirited.

If you're not sure what to do next or where to turn may i suggest PALS. (The Patient Advice and Liaison Service) from its website you should be able to find a local office. From the link i've provided you should see that they offer the opportunity to discuss your concerns with your treatment/level of care and should be able to help & advise you (Or in the worst case scenario make a complaint).

I've never used the service myself but my SIL works as a medical secretary and told me about it

sunnyone

SingleSue wrote: »

I had been referred to the rheumi because the physio had gone as far as she could and wanted to see if they could help me with more specialist help..the same with the doctor, wanted to see if there was anything going on.

I had never (and actually still haven't properly) been diagnosed with HMS or EDS but have been diagnosed with arthritis (wrists and hands age 19/20 and spinal age 30) but there was never any investigation into why...although I do remember the physio freaking out at my knees hyper extending backwards in my mid 30's and being told off by the physio at 18 for touching the backs of my hands to the floor but there was never an explanation as to why I shouldn't do those things.

All in all, it was rather disappointing and now I have nothing...no physio, no hydro, no-one else to see, nothing...just been left.

And still no definitive reason just a vague, very likely to have EDS. If I had a reason, I could work with it and move on, who knows, it may not be EDS at all but something completely benign and nothing to concern myself about.

I don't worry about the benefit side of things as I have no intention of claiming, I just need something to work on in my mind or even just something to update my medical records so that it is there if I go up about something else that could be related.

I have the diagnosis on record and my specialists are all aware of it Sue, Im also getting the same treatments as I would just for that diagnosis but ontop of it Im also severly disabled after the crash and I have even more disabilities on top of that :eek::eek::eek:

What type/s of arthritis do you have Sue?

I can understand where your coming from and what you need, my kids are both diagnosed with HMS too, you and all your boys need to have a family group appointment to sort it all out definitively IMHO so that you all know whats going on and whats best for your treatment in the future for you all.

Sorry Im tired so my reply might be a little disjointed or weird, my husband is recovering from his stroke but his sleep is all over the place.

SingleSue

Osteoarthritis was what they diagnosed in my spine...they put it down to all the dancing I did in my younger days (training from age 5 to 16, minimum of 6 hours a day), back then, it was considered normal to be mega bendy and no question was ever raised that the arthritis could have been caused by anything actually wrong with me.

Same with my right wrist, hand and fingers...doctor put it down to it being my weaker hand and with starting work in an office, it wasn't used to the work and had worn down quicker than expected...again, nothing was said about the fact that my right hand etc was extremely mobile....weird yes, anything wrong, no.

I agree, we need something definitive as a family...when eldest was diagnosed, it was recommended we were referred to the EDS unit at Addenbrookes, especially for middle son as he was seen as the most likely out of the other children to have EDS because of his bruising problems (bleeding disorder discounted in primary school) and ultra mobile fingers...strangely, they didn't seem too concerned with youngest despite the fact he has been confirmed HMS since a toddler.

Your post made perfect sense to me..not weird at all. I know what the impact of a stroke can bring to family after my dad had his strokes last year...we were all run ragged for quite some while afterwards, especially my mum, so you do have my thoughts.

And thankyou.

shays_mum

Cagneyface, sorry about the weekend - i can truly imagine your frustration & disappointment , it took me 37 years to be diagnosed, only when i really pushed over & over again. Once your diagnosed, then its going from place to place from varying often contradictory opinions from clinicians who are supposed to know!!.

Singlesue, how can they not have formally diagnosed you??, where did they think your sons got EDS3 from the fairies?!. Funny thing is, they tried the same with my dd, but her paediatrician pushed for a formal diagnosis, stating that if she displayed all the symptons & I showed all the symptons & was diagnosed what was their problem??. I don't know where all this reluctance comes from me thinks cost cutting

To all of my fellow mse's hang in there, we can hope it will get better one day ((((big hugs)))) xx

Redleela

My heart goes out to everyone. I find my Rheumatology appointments stressful too. I bawled my eyes out after my last 2 appointments in the hospital grounds as I din't feel I was getting the information I needed/was asking for & not making progress. Since then I have made some progress & discovered it's a waiting game with treatment - I'm on a mix of painkillers & a DMARD, I'm waiting for week 12+ to see if the DMARD works for me.

Cagneyfan I've never been good at speaking up at medical appointments either. Have you thought about visiting your GP to speak about your concerns and taking a supportive friend or close relative along? If you can't face that you could consider writing to your GP instead? You could ask someone to check the letter over for you to make sure you get your point across in the right way (with the right tone e.g. I was disappointed with my recent Rheumatology appointment...). I'm sure PALs are helpful but you might get more progress via your GP - he / she can ask for your next Rheumatology appointment to be brought forwards and ask about treatment. Also GPs can start treatment e.g. DMARDs, in my case my GP was willing to prescribe them provided the Rheumy agreed & this could be done in writing.

Alik

I don't suffer from a bad GP, he does listen to me but its all the people he refers me to who don't.

I was given a Ruheumatology apointment 3-4 years ago. The doctor took one look at my date of birth, and basically said Nothing wrong with you.
So I wasted an hour speaking to someone who instantly persumed there is nothing wrong with me because I was only 15-16 at the time.
It was like having a flash back to my child hood. When I was told constantly between 4-11 that there was nothing wrong with me as I was "too young" to have a back problem. One Doctor even asked me if I was pregnant. Turned out I did have a back problem and it could of been sorted out if I was diagnosed when I was 5, rather than 11.

I had a referal for suspected MS a few months ago. Had a neurologist treating me like I was an idiot, just because I was able to communicate in a level which supposedly means you must have a degree, but I thought speaking English without cursing and using slang all the time didn't require a degree to do.
He also got me to do an eye test, when I couldn't see anything out of my right eye except the A at the top, he started yelling at me to stop pratting around and just to read it. If I say I can't see something, yelling at me won't make my eye suddenly work. I wonder if he would of done the same If I 29 rather than 19?

I've pretty much given up on the NHS. Although I'm not to trusting in private heatlh care either, had a cockup with optical express this week, they tried to operate on my brothers Right eye which is blind due to a brain problem and they should of been operating on the left.

Although my GP is good, trying to get an apointment with him is like gold dust. I really feel sorry for those worse off than myself, and those who have been suffering for a lot longer than me. It really sucks how poor quality treatment people get and try to blame it on cut backs, but then they give people nose jobs on the NHS.

cagneyfan

Alik wrote: »

I don't suffer from a bad GP, he does listen to me but its all the people he refers me to who don't.

I was given a Ruheumatology apointment 3-4 years ago. The doctor took one look at my date of birth, and basically said Nothing wrong with you.
So I wasted an hour speaking to someone who instantly persumed there is nothing wrong with me because I was only 15-16 at the time.
It was like having a flash back to my child hood. When I was told constantly between 4-11 that there was nothing wrong with me as I was "too young" to have a back problem. One Doctor even asked me if I was pregnant. Turned out I did have a back problem and it could of been sorted out if I was diagnosed when I was 5, rather than 11.

I had a referal for suspected MS a few months ago. Had a neurologist treating me like I was an idiot, just because I was able to communicate in a level which supposedly means you must have a degree, but I thought speaking English without cursing and using slang all the time didn't require a degree to do.
He also got me to do an eye test, when I couldn't see anything out of my right eye except the A at the top, he started yelling at me to stop pratting around and just to read it. If I say I can't see something, yelling at me won't make my eye suddenly work. I wonder if he would of done the same If I 29 rather than 19?

I've pretty much given up on the NHS. Although I'm not to trusting in private heatlh care either, had a cockup with optical express this week, they tried to operate on my brothers Right eye which is blind due to a brain problem and they should of been operating on the left.

Although my GP is good, trying to get an apointment with him is like gold dust. I really feel sorry for those worse off than myself, and those who have been suffering for a lot longer than me. It really sucks how poor quality treatment people get and try to blame it on cut backs, but then they give people nose jobs on the NHS.

I couldn't agree more with everything you say. I registered with a gp practice over 18 months ago and only recently was able to get an appoinment with the gp of my choice! And then trying to get another with the same gp has been a nightmare, despite the gp acknowledging that I'd prefer to see the same gp for my chronic problems (obviously I wasn't that fussed if I suddenly had an earache or something). They gave me a morning appointment, I can hardly move in the morning and it was only when a phsyio noticed the appointment and then said, "go and have a word at reception and I'll ring down" that I got a change of appoinment.

Surely, it should've been enough that I requested a later appoinment time. We're just considered to be irritants!

steven123

Hi cagneyfan,sorry to hear about the difficulties that you and others have had with apps, diagnosis and even trying to find someone to listen.I was refered to a consultant following my gp recieving the results of a blood test that she requested due to intermittent stiffness and back pain over a few years.I must be lucky and was asked a few questions and had a brief examination by the consultant who diagnosed anklosing spondylitus which is a type of arthritis,this was all done within a period of about five months.I think that once you find out that you have arthritis and which type, it is a lot easier to go forward.My local hospital has specialist nurses that only deal with arthritus also there may be local groups for people with different types of back pain that you may be able to contact as in my area.The groups may hire the hydrotherapy pool,privately and the hydrotherapy dept could put you in touch with a local group if this were the case.My group hire the pool on a night for one hour and two other groups on two other nights,physios are there in the pool to offer advise and instruct in how to get the best from the session.Because this is done by the group the hospital staff do not tell you that it may be available in your area so please enquire with the hydrotherapy staff,they will know of any contact details of groups that may be able to help.Good luck in getting the arthritis diagnosed soon.

shays_mum

Hi Singlesue,
May i ask where your ds were diagnosed?.
My dd went to a rhuemy at GOSH & they are being particularly vague thanks in advance

Cagneyfan how are you mate?

I have to confess i went to have my annual maintenance check the other day & bawled like a baby - so not like me at all!!

Just found this link for people suspected off EDS but not diagnosed HTH someone!!:
http://www.hypermobility.org/complex.php

SingleSue

It took a diagnostic process lasting over 6 months seeing cardiologists, paediatricians, a geneticist, physio etc. It was originally suspected that he had Marfans.

It was eventually the geneticist who was on outreach from Addenbrookes who diagnosed it.