HMS is EDS III (confirmed at HMSA conference)

zoelife

hannahO wrote: »

Thanks Trialia. It's because I can do it I didn't know why it was not normal. I knew I was not normal

This discovery about hypermobility is making me giggle....childhood memory etc

that made me laugh I always say I'm not normal but them would i really want to be that boring just lose the pain and fatigue me thinks.

interested to know if others are getting DLA or any support monetarily for HMJS that isn't "life threatening" but ruddy painful knackering and still involves lots of cruddy effects?

Oh and do you need to be a member to get info on conferences etc?

oh and has anyone seen prof grahame? his books are really good

D&DD

Thanks Snoops I'm pretty sure its something like that if its not Marfans because he pretty much has probs everywhere and we've been told already he's got a collagen disorder

He's been under various hospitals since little as he had dimples in his sacrum when born and the first thing the midwife said was oh he may have spina bifida and its sort of gone on from there!!

They finally ruled that out when he was 5 then he got a staph bug next one down from MRSA and we nearly lost him.

After that his feet started to get really deformed,then his back leading to a diagnosis of scoliosis..

Hes had a brace since 8 then surgeries since 11 involving sliding rods and now finally a fusion from T1 to L3 a few weeks ago.

In the meantime I met another mum in hospital and she mentioned he had characteristics of Marfans so we asked our gp for a referral and he then asked me how long he'd had a heart murmer!!

We now know he has a heart murmur and his aorta is dilating,he has astigmatisms and problems with his jaw.

One of his surgeons has mentioned Marfans and hypermobilty and they are treating him as if he is diagnosed Marfan. When he had his recent op his spine he had an awful time they think due to the collagen probs sooo it will be interesting to see what the tests show up.

We have seen a marfans specialist and she thinks its a collagen disorder not Marfans but wasn't 100% sure and shes the one whos ordered the tests as in her report she states both me and OH have numerous characteristics ourselves and shes not sure if its just our genes mixing or not..

snoop2008

D&DD heres the link for EDS. I will come back to this post. fingers are cramping!

http://www.ehlers-danlos.org/index.php?option=com_content&task=view&id=4&Itemid=5

snoop2008

zoelife wrote: »

that made me laugh I always say I'm not normal but them would i really want to be that boring just lose the pain and fatigue me thinks.

interested to know if others are getting DLA or any support monetarily for HMJS that isn't "life threatening" but ruddy painful knackering and still involves lots of cruddy effects?

Oh and do you need to be a member to get info on conferences etc?

oh and has anyone seen prof grahame? his books are really good

When I became a member they send you all the info including conferences. Lots of peeps on the site have seen P.Grahme. Take a peek at the site it's very informative.

jazabelle

I'm seeing Professor Grahame in January. I was diagnosed as having Hypermobility Syndrome awhile ago by a Rheumatologist, and I saw him again a month ago, and he seemed to have forgotten he'd diagnosed me and said I wasn't Hypermobile! It's a load of rubbish, because since he diagnosed me I read up loads on it and I fit all the symptoms, and can do quite a few 'tricks'! I can put my foot on my head, my knees lock backwards, my wrists/fingers bend back.

Even going back to my childhood, I remember my ankles and knees 'giving way' regularly - once at the the top of a flight of concrete steps, which was fun! I also have degenerative discs in my lower back, which the Spine Specialist Physio said was very common with people with HMS.

Anyway, very much looking forward to seeing Professor Grahame and also Professor Davies at the Fibromyalgia clinic who I'm seeing in January.

snoop2008

jazabelle wrote: »

I'm seeing Professor Grahame in January. I was diagnosed as having Hypermobility Syndrome awhile ago by a Rheumatologist, and I saw him again a month ago, and he seemed to have forgotten he'd diagnosed me and said I wasn't Hypermobile! It's a load of rubbish, because since he diagnosed me I read up loads on it and I fit all the symptoms, and can do quite a few 'tricks'! I can put my foot on my head, my knees lock backwards, my wrists/fingers bend back.

Even going back to my childhood, I remember my ankles and knees 'giving way' regularly - once at the the top of a flight of concrete steps, which was fun! I also have degenerative discs in my lower back, which the Spine Specialist Physio said was very common with people with HMS.

Anyway, very much looking forward to seeing Professor Grahame and also Professor Davies at the Fibromyalgia clinic who I'm seeing in January.

Good luck with that in Jan. Yes I do believe you do have it. We are known as bendy folks and my Rheummy said we have abnormal joints. He also asked me about my childhood , if I was into sports. I said I was excellent at yoga and gynanastic but found bending limbs very easy without any manipulation or pain. He said that was the difference between us and others without the condition. I do tricks with my fingers too, my legs looks from side view like a curved banana!!. I also was diagnosed with DDD, L4, L5, S1 a few years ago too and have other conditons. I hope it all goes well for you!

jazabelle

Thank you! As I said, I know I have it - my rheumi seems to have forgotten though!

I've always been rubbish at sports though!!

I have lots of bulging discs in my neck and my lower back. I have Fibromyalgia as well, but I wonder if it's the degenerative/bulging dics that make walking/standing so painful. Up to two minutes on my feet and I'm in agonising pain and can't go any further? Now using a wheelchair a lot of the time - well, I was. It was a temporary loan and I'm just waiting for an assessment at the NHS wheelchair service. Until then I can't go out, unless the place I'm going to has a wheelchair or scooter. So fingers crossed I don't have to wait much longer!

Trialia

jazabelle wrote: »

I have Fibromyalgia as well, but I wonder if it's the degenerative/bulging dics that make walking/standing so painful. Up to two minutes on my feet and I'm in agonising pain and can't go any further?

It could just be the fibro and HEDS, honestly, because I have the same problem with standing still for more than a couple of minutes, and I don't have disc problems (touch wood). My leg joints just can't take it without searing pain.

SingleSue

D&DD wrote: »

He's been under various hospitals since little as he had dimples in his sacrum when born and the first thing the midwife said was oh he may have spina bifida and its sort of gone on from there!!

Now that is interesting....I have dimples there too! Ex hubby always thought they were weird but cute.

jazabelle

Trialia wrote: »

It could just be the fibro and HEDS, honestly, because I have the same problem with standing still for more than a couple of minutes, and I don't have disc problems (touch wood). My leg joints just can't take it without searing pain.

Ah, it's interesting to know you have it as well without disc problems.

I guess with so many issues it's difficult to know what causes what!