Hi Jeddy, your symptoms sound so similar to mine and were close in age I'm 36 I have been dxed with Probable YOPD due to the neuro thinking it's genetic PD (Parkin mutation) I've had my bloods took 6 weeks ago waiting for results, from what I understand genetic pd is the same as idopatic pd just the know the cause is due to my genes.
Mine are all one sided (right) have extreme dystonia in my right hand and arm is affected due to my hand not working, I have a limp and slap my foot down and drag my right foot now and again due to not flexing up quick enough I also have no tremor... These symptoms close to yours?
How much Sinemet you on per day? I'm on 1 x 100/25 madopar 3x a day but I think I need the meds need increased they are working as my hand has about 50/60% movement/speed etc.
Sorry av rambled on abit just you sound so similar to me.
Trev
Hi Jeddy,
I live in County Durham, Yeah I think I need an increase in my meds to have seen notable difference but think a slight increase would be beneficial.
When you say your left side is dystonic is your hand/arm affected?
Cheers
Hi Jeddy
I Haven't seen that acronym TMD/TMJ on this forum before in my time here or elsewhere, Perhaps you could tell us what it stands for other's might know it in another expression or name.
On a facebook group there was an article about that. Husband grinds his teeth badly in the night and also wakes up with bloody pillow. He is currently awaiting referal to hospital for a guard for his teeth at night. We will ask about TMD/TMJ if he gets to see a dentist there.
found the article
well husband had today a consultation at the hospital with a dentist. THE MOST stroppiest and unfriendly dentist you could ever meet. He near enough accused husband of wasting his time. He did ask about TMJ and is it possible etc etc and he just point blank refused to consider it. He told husband to come back with an exact list of that symptoms he want to attribute to TMJ. But he grunginly and despite his better judgement allowed the mouthguard. So now waiting for another appointment for guard impression, then another date for guard fitting.
I hope you lot if you do go and ask get a better more open minded dentist. But just in case do some homeworks and sadly be prepared to do battle.
PS I have not given up. Doing more research and will get paperwork together for next assault!
Sorry to hear you were treated so badly. I am still waiting to hear from my dentist and find out whether he does this procedure......sent 2 emails now. Might go and see my GP and talk to her about it and see if she will refer me to someone. I will go armed with a list that may qualify me for TMJ/TMD. Thanks for the tip. I hate it when we are made to feel as if we're a nuisance for wanting to improve our condition. They should show more respect and consideration.
Hope your husband gets on with the mouth guard.......keep us posted.
Twinks.
I'm having a mouth guard made due to me biting my tongue at night, that and the damage i do too my teeth my dentist thought it was a good idea and pleased to get one made up from a impression.
Husband had a broken tooth and at the second time the same tooth broke within a year, she said he needs mouthguard to stop it happening again. But the poor man has to also wear a mask for his sleep apnea, so not sure if he will do mouthguard and mask at the same time.
thank you Twinks. Our dentist does not do the guards, she refers you to hospital and they are overwhelmed, which is why they seem to have now a rottweiler as dentist to screen people? In my research for TMJ/TMD I have also come across Chiropractors who can help. Apparently is is called activator and trigger point therapy? Might we worth having a session or two?
Oh that's very interesting. I see a chiropractor every 3 months, so will contact her. Thanks for that info.
I'm determined to pursue this, even if it comes to nothing!
Twinks.
Spoke to my dentist the other day, who is going to see if I could benefit from a mouth guard because of TMD. He will fit one for me and do it all at his dental practice. Won't be for another 3 weeks or so though, as he's just had a knee replacement op! He also mentioned an ultra sound treatment that might help. Will let you know how I get on.
Twinks.
Hi twinks,
just read these posts with interest. I had a mouth guard from my dentist fitted. It did help me with the biting of my tongue at night and now I don't always need it. However, I think I was on some nights pushing it out in my sleep as id find it on the pillow next to me!!
I should pick my mouth guard up this friday comming, i had a bridge made a few weeks ago for a tooth i had snapped off in collision with another, since fitted my magic tooth i have bitten my tongue slightly less in my sleep, whether thats the bridge altering my bite or i am conscious of it since it has been fitted im not too sure but im looking forward to the guard anything to keep one more pill being added is a good thing with the unwanted side effects that may bring.
feels like progress..