Diagnosing JHS (HMS), EDS IV and Marfans

[jjuice]

This is probably going to sound quite nuts..but then I feel as though I am actually going mad these last few months.

I have read lots and lots of the forum and can relate to lots of things..such as dental injections and epidural not working correctly...but couldn't find anything similar to this.
I have HMS... I have had a sketchy diagnosis from physio and recently a MSK Consultant. I am not severely affected (as I have read some cases on here my heart goes out to you) but have deteriorated over the last decade with tennis elbow, a ganglion on my wrist, shoulder joints hurting, hips, ankles, chest etc... quite bad and in time with my menstrual cycle (and ovulation)
I have never had a dislocation although sometimes I leave my feet in my boots.
We went skiing at Christmas and my ear never unpopped from the plane....the Dr has given me 3 lots of antibiotics for it now. In that side of my head I have also had pressure pains that ease if I pull my hair (Dr says is migraine)
On Saturday I awoke really early and moved my head to look at the clock. I felt like my head had been ripped apart then clunked back again. (same side as migraine and ear ) - left hand side at the back.
Is it HMS related or is it just migraine?

[princess]

Hi there- I get loads of pressure in my head and like you wehn I pull my hair it feels better. I am new here too so all I can say is my experience. My physio says it is caused by weakening of the joints in the neck that can trap nerves and that into the scalp? Dunno.? The Peads that dx my son and daugheter said head pain from hms is common and if you can relieve or help the pain by pressing on the scalp or area of head it is muscular and not internal ? Don't knwo if that helps you. Have they suggested any tests?
Hope you feel better - my head feels really full and numb on scalp and burning most days it is not nice.
Jai

[jjuice]

Aww thanks for the hug. I sure could do with some these days. I feel forever on the cusp of tears.

The Drs (2 different) have looked in my ear said they can see nothing so must be inner ear infection...here are some antibiotics.
The antibiotics are not doing anything other than removing me from the surgery.
I have made another appointment for tomorrow.
Maybe the headaches are from banging my head against a brick wall

I have to be honest the pain on Saturday scared the pants off me. I am ok if I know why and what something is..but I kind of set off imagining dislocated joints in my skull jabbing into my brain.
I like the sound of it being muscular if you press on it or pull it.

[Finarda]

It doesn't sound like a typical migraine. One thing my physio/osteo used to get me to do was to pull my hair to stretch out the dura (supposedly) as well as the muscles in the scalp. She would also gently twist my arm out in a way that again stretched the dura surrounding the nerves. Might be worth seeing an osteopath to see if they could help - just make sure that they understand HMS and dont' do anything to make you worse.

Having said that, I get daily migraine headaches but I still often trigger the headaches by changing my neck position.

Fiona

[Blaadyblah]

Modnote: This discussion is heading off topic for this post - please see existing topic on hearing and other ear related problems, there are also dedicated topics on migraine and other headaches - please use the search facility.

Discussions here should be kept to the diagnostic similarities/differences between JHS, EDS IV and Marfans.

[TiffanySkladan]

Hi Everyone,

Just wondering if any Canadians have any info on the doctors that diagnosed you? My GP admits that I have an "in-born hypermobility" and that my health problems are due to weak connective tissue, but is reluctant to call it EDS. He seems to think that there is only the classic typ and I do not have that. I just want some help finding someone to dianose me.

Thanks
Tiffany
modnote: title changed

[Blaadyblah]

Ladies & Gentlemen, please remember that Doctors should not be named on the boards unless they are HMSA medical advisors (a list can be found on the rules page). You may name establishments and clinics, but if you wish to be any more specific, please take it to a private message.

[TiffanySkladan]

Okay Canadians... PM me!

[Finarda]

I was diagnosed at the Children's Hospital of Eastern Ontario (CHEO) in their Medical Genetics department. I think that's where most people in Ottawa whom I've talked to were diagnosed.

Edited...
I have deleted the rest of this email because apparently the Arthritis Society made a mistake in posting that there was an EDS clinic. The Doctors name that they gave was apparently overwhelmed by referral requests (which should tell people how desparately we need a clinic!). There is NO EDS clinic in Ontario.

Fiona

[cavemonster]

Hi,

I was just reading this link http://www.reumatologia-dr-bravo.cl/patients/WsuspectJHS.htm. I think it's linked to elsewhere on the site. I have a question about the "hand holding the head up" sign of HMS. I used to think that this was a sign of HMS because of the position you put your hand in when holding your head up - i.e. bending the wrong way/too far back. Now I'm wondering if the sign is actually the action of holding the head up at all. So the symptom of HMS is 'having a heavy head' which needs holding up. Is that true? I though everyone held their head up with their arm. My brother does...OK that doesn't really rule anything out but still...

Since I've been thinking about this I've been trying not to hold my head up with my hand - i.e. sit up straight! It's hard work! I think I need to move my computer screen up about 5 inches...anyway - I appear to be going off topic. Just wondered if I'd understood it properly - what do you guys think?

Jen

[dibley]

Seems to me that you understood it but aren't really qualified to tell. Anyway, it was all news to me and I'm now ***smacked. I've had an aching, heavy head for me years that I can remember and always hold it up the same way as many people in those pictures. I even find myself tilting my head back as far as it will go to rest it on my shoulders and back. I also rest my head on my shoulders if I'm sat in a chair with no arms. It always seemed a 'normal' thing to do. If I don't support my head my neck and shoulders become uncomfortable and achy and the discomfort goes up the back of my head. Does anyone else have similiar symptoms and are they definately part of HMS. I'd like my 'evidence' rather than just take the word of an article.

dibley

[Finarda]

On the 'heavy head' thing. I didn't realise how often that I tilted my head over to one side until I started watching Real3D movies at the cinema. If I look straight on I can (almost!) see in 3D, but if you tilt your head you lose the 3D affect, and as it turns out I try to tilt my head about every minute or so. Really annoying to suddenly start seeing double of everything and realise that it's just because my head is tilted. My physio had pointed it out to me before that I almost always listened to her with a tilted head or my head resting on my hand.

Fiona

[TiffanySkladan]

Thank you Fiona! All of your input is soooooooooo greatly appreciated!

I am going to trying to get a referral to the Hamilton Clinis ASAP.

[Stone]

Moderators, should I start a new topic with this info or should we modify this to the name of this thread, or can it go somewhere were all of us Canadians can see it?

'tis done!

We can use this thread for all Canada-specific clinic talk.

Stone

[Stone]

That's actually a very good guide, makes you think! I knew I had blue sclerae but hadn't realised that holding your head or being able to extend your thumb flat across the palm would be considered diagnostic. Nice to see big flappy ears getting a mention too

Stone