HMS is EDS III (confirmed at HMSA conference)

hannahO_2

I'm not sure about legs, it's kinda hard to see it for myself.

I have brown eyes and I thought the blue ring around my eyes and blue in white bit were normal :eek: but it appears to be not....:( Is it possible that even with all these symptoms and I may still not have EDS IV? I feel ill now.

LittleTinker

It really isnt a case of what is 'normal' or not. There are many people who are not 'normal' when it comes to bending their body parts in many different directions and have all kinds of odd things happening with their joints etc.

These people are perfectly 'normal' in the same way as someone with premature balding is normal or flat footedness is normal.

Neither is it reason in itself to be claiming disability benefits as you can be perfectly well, fit and able with HMS. Also, you may not show every symptom of the syndrome.

However, a small percentage of people will have this problem so badly that their life is completely changed due to lack of mobility or needing care.

The ones who are claiming that HMS is worse than it is are giving the genuine sufferers a hard time in getting benefits for themselves as DM at DLA are having to try and figure out the cases that are real.

Trialia

LittleTinker - why on earth are you bringing up disability benefits? This thread is not about that.

I dislocate something every single day of my life and am in chronic pain with secondary fibromyalgia from severe hypermobility-type EDS. I am, unfortunately for me, in your "small percentage".

I don't know who you're accusing of claiming wrongly that "HMS is worse than it is"? I know some people who were officially diagnosed with HMS rather than HEDS who have it as badly as I do, and it is only fair that the two diagnoses of exactly the same symptoms should be conflated officially at last.

hannahO_2

Trialia wrote: »

LittleTinker - why on earth are you bringing up disability benefits? This thread is not about that.

Thanks for stating that Trialia. I am not claiming DLA for HMS or intending to figure out how to claim DLA on the basis of HMS. I have other symptoms which appears to belong to EDS IV and I am concerned about getting a diagnosis that's why I am asking a lot of questions before I jump in to a conclusion and speak with my gp.

Anyway, who are you to argue? If I were to claim DLA after getting a diagnosis by a consultant who could write a report to DWP about my health conditions to indicate that I may be entitled to DLA. Still not good enough for you?

Adaline

Thanks OP, that's really interesting. I was diagnosed with EDSIII by Rodney Graham, who's mentioned in the article, and was one of the champions for having hypermobility recognised as a condition by the medical community and social services. When he told me about all the related symptoms, it made so much sense of many things in my life. It's amazing how many more people are now being diagnosed, or recognised as having it now that it's more in the public arena.

snoop2008

Hiya Cally, thanks for the info. I have joined the Hmsa group BUT I do find it scary to say the least. I was diagnosed with Hypermobility this July at the UCH, by the rhuemmy. I have since learned that the prolasp disc, lumber L4, L5, incontinence, muscle spasms loss of curves in spine and feet, burisitis are all associated with this condition which apparently is what I had all along!! Since Feb this year, I had began having acute attacks of cramps in back of calves, feet and hands. My doctor looks at me like I am mad. The blank looks of some pros who claim to know this condtion is tiring as many do not!! There are so many symptoms. Today after visiting my doc for what I would consider fingers cramping and remaining locked and stiff, unable to support my neck and neck to lay down, severe headaches and visual problems, been to moorefields twice since feb, the doc said that my fingers were NORMAL!!. Had nothing to do with liagaments as far as she was concerned even though infront of her, she can clearly see that I have HMS.

Two weeks ago, after receiving the info pack from HMSA, I took the leaflet into my dentist at the hospital as my walking and neck pain is chronic. Interestingly enough, she was not familiar with the term HYPERMOBILITY , BUT EDS!.. Well, I had a small crack in my filling and I needed 3 injections, something very common for many HMS sufferers along with lots of other conditons.

I am so tired of playing doctor to doctors who do not take people like us seriously even when there is clear diagnosis. I am having treatment in October at the pain clinic at the UCHL hopefully I will referred to the hypermobility clinic for the right treatment.

All this is new to me, and typing and writing is terrible as I cramp all the time and my neck is always painful. I am glad their is NOW a clear definition of this dibilitating conditon.

cheers Snoop

Trialia

Snoop, WRT the dental stuff, I would ask your dentist for intraligamentary injections for your anaesthesia. Apparently they work better on us (EDS people, I mean), though I have a phobia of needles anyway so haven't had them try it (they do mine under general).

It is amazing, and disturbing, how few doctors over here actually know all that much about EDS, even hypermobility type which is the most common.

snoop2008

Thanks Trialia, I will defo mention the injections to her next visit, although I dread the dentist!! I do recall when I last saw her she wanted to tell me that I needed to be referred to a neurologist but she didn't mention it. When I went to moorfields the opt told me my eyes were perfect and what I had experineced was a severe migrane attack. I told him I was having numbness in my head and face and my eyes lids especially the right would droop. He said I needed to be referred to a nuero. Thats one of the reasons for seeing the doc today, who has made the referral for this.

When I told my dentist, she said she was surprised I had not been referred to the neuro since feb when I began having acute attacks of one form or the other. Anyway, I didn't want to go to yet another specialist but as the doc said today, even though my eyes are fine, it's good to go. So now my anxeity is high having to wait for something or nothing, but nevertheless another anxious wait of what the hell next is happening to me!!

I hope your all well, as well as can be, because it's no fun living with this condition that has so many other conditons attached to it. I honestly don't whether I am coming or going with condition as it is complex to say the least.

Snoop

D&DD

Thanks for posting about the dentist Snoop thats really interesting.
My son has had weird health probs for years and they are now thinking Marfans or something along those lines but when we went to see a specialist with him myself and OH were checked over too and I,apparently have more symptoms than he does,as does OH so we are off for genetic testing in a couple of weeks.

The dentist thing interests me as I've always had probs with jabs working..they gave me so much last time I nearly ended up fainting!

Will be interesting to see what the docs say,son has just undergone his 8th surgery for scoliosis and he's only 15.

snoop2008

D&DD wrote: »

Thanks for posting about the dentist Snoop thats really interesting.
My son has had weird health probs for years and they are now thinking Marfans or something along those lines but when we went to see a specialist with him myself and OH were checked over too and I,apparently have more symptoms than he does,as does OH so we are off for genetic testing in a couple of weeks.

The dentist thing interests me as I've always had probs with jabs working..they gave me so much last time I nearly ended up fainting!

Will be interesting to see what the docs say,son has just undergone his 8th surgery for scoliosis and he's only 15.

Hiya D&DD, yes do mention EDS, many docs are not familiar with it. There are several spectrums to EDS, from what I am learning. It's all new to me. The dentist thing is a common one I have learned, so it would really be good idea to mention this.

After my 3 injections, I could still feel a very slight pain. I was worried about having 3, I thought no more not a 4th, so I tried my best to take to pain which just about beareable!!!

I don't what happened but within a week I had vision complications, dizzy spells, like you wanting to faint and I totally freaked out.

I phoned up my dentist who felt very sorry for me and she believed that what may have happened was a very bad allergy caused by the injections. Poor thing felt guilty but no one was be blamed. My neck was already problamatic so laying in the dentist chair was more than uncomfortable to say the least but, she looked after me very well.

The cramps are terrible and when I cough I get the cramps in my legs. I have no idea how the condition is day to day and I sprain my wrists just opening jar bottles and cans which I can not do anymore. Just turning my spine to look another way brings on spasms and cramps. But anyway, I was adviced by a nice lady from HMSA, I have learn to pace myself and learn how to move my body. and excersise often makes this condition worse due to over stretching muscles which work harder due to laxity in ligaments and joints. My finger ligaments are loose and I think my the same thing is happening to my neck. I take one day at a time now and watch and monitor my every movements. It is very exhausting.

I hope your son feels better. I had mine since childhood but only got my diagnosis lately as mentioned.