FUCKITYFUCKITYFUCK thread 2!

[CouthyMowEatingBraiiiiinz]

In starting a new thread as it has been pointed out to me that the old one is getting a bit big to read through.

Link to first thread

She also said that my joint problems probably aren't rheumatoid arthritis, but rather a specific type of arthritis that is common in people with Ehlers-Danlos.

Also me being born with dislocated hips and having to have them plaster casted and still suffering from hip dislocations frequently is all also connected to EDS.

Couthy! I lost you when you moved threads. So glad to see things are going so well.

A lurker butting in here, Couthy.

Ehlers-Danlos can be associated with seizures - might this be relevant to your epilepsy?

Pardon, Methren?! I did NOT know that...

My DD was assessed for possible epilepsy when she was 9yo, about 5 years ago now, too, but no full diagnosis as yet, and currently uneducated, and I still believe that my 9yo DS2 has absence seizures. Ditto my DS3...

I will have to do some research on that one, that's a new one on me!

Oh I fucking HATE Autocorrect!

NOT uneducated. UnMEDICATED FFS.

Obviously it depends on what sort of seizures you have and what previous investigations have turned up, so I'm not saying there is definitely a link.

But you could try this article:

link.springer.com/article/10.1007%2Fs00381-010-1256-1?LI=true

It is quite technical, but if nothing else you could wave it at your GP/neurologist and see what they think.

I have complex partials, myoclonics, absence seizures and the occasional drop attack. Don't have 'typical' tonic clonics...

I've read a few articles now, and it seems to me like my epilepsy could be attributed to Ehlers-Danlos.

I have often wondered about a Chiari malformation too, given my head and neck problems - the joint at the top of my spine subluxes numerous times a day, and has done for years.

It seems to pull together so many of our issues! More than I had even realised.

While in theory it is possible that the various health issues of you and your DCs are due to different causes, the simplest explanation would be a genetic disorder affecting each of you, albeit in slightly different ways. I'm not trying to diagnose over the internet, but it does sound as if it is worth exploring the Ehlers-Danlos with whoever is treating you.

Have you ever had a brain scan? A Chiari malformation should show up on MRI, for example.

the Elhlers-Danlos possibility

Sorry, should preview before posting.

See if you can be referred to the EDS Diagnostic Centre at Northwick Park Harrow, under Prof Pope - he works with Prof G.

They will be able to do skin biospsies to identify EDS. It takes time and is undertaken if you have enough other signs - which it seems you do have.

My son has EDS - a complex varient not yet named [great] and was dx here and at GOS/Evelina. He blacks out due to autonomic nervous system dysfunction, has bowel/bladder problems and some learning difficulties - all down to his EDS - 8/9 on the Beighton. His spine subluxes at the base of the skull, making him dizzy, and has pain issues each day. It all reads very similar. Pm me if I can help you. x

I will PM later tonight. It DOES all sound very similar. I am glad I've got somewhere now, but am that it's taken so long.

I know EDS doesn't explain the Autism thing, but there could be separate chromosomal issues causing that.

My neck keeps subluxing today. I've had to break out the big guns and take the max dose of cocodamol today as it is literally agonising.

All you hear when I turn my head is "crrrrruuuuuuuunch, crunch cruuuuuuunch crunch OWOWOWOWOW" !

DS3 is being referred to the Evelina for his allergies. It would make some sense for him to be seen there for this too?

But I feel like a flipping space cadet because of the pain meds!