Jaw and Throat Spasms

I forgot to mention that I'm new and have never posted... I would be grateful for ANY HELP 🌻

Hi there and welcome🙋. I am sorry to hear you are suffering. You will find support on here. Everyone is kind and helpful.

Please follow up with your Doctor rather than 'wait for them to decide what to do next' if you feel the symptoms you describe are getting worse or causing you significant problems.I have found that we can often be forgotten if we don't take charge of our own 'health route'

The symptoms you describe may or may not be related to your hEDS, but hEDS is a connective tissue disorder and is multisystemic with comorbidities.

In my experience - and that of others- we have to educate our Doctors about EDS and steer them towards the appropriate tests and treatment that we need. Having an EDS specialist can help with this.

I have hEDS and associated conditions, as does my son.. We were diagnosed privately earlier this year by Dr Hakim in London. We saw many rheumatologists and various consultants before him who could not identify our many symptoms of this hereditary condition. We have found Dr Hakim to be excellent, offering ongoing help and support..

I hope you find a knowledgeable consultant who can give you the care you need. Best wishes xx

The HMSA is run by people all affected by EDS and HSD in some way. They can offer help and support. Dr Hakim is cheif medical advisor.EDSuk also offer advice and support.

Hypermobility.org

ehlers-danlos.org

Hey there and welcome Oh my goodness poor you, I agree with Tillyray, don't let them watch and wait, they'll forget. Are you being seen by ENT or a Dental Hospital? You need to get those symptoms checked and then you know what you're dealing with. Don;t let your Dr make you feel like a hypochondriac, if these symptoms are causing you distress they need checking out. Take care, I'll look forward to your posts. There are so many helpful people on here so feel free to ask anything. This and the fibro forum have been an immense help to me and in particular, Tillyray. I find there is much to be learned from those who have walked the path before you.

I have EDS type 3. I have left sided throat spasms since I was 12. It pulls my trachea to the left and it feels like a peanut stuck in my throat. I had my tonsils,removed,as the Dr thought that was what was causing problem. I have had lots of surgeries due,to misdiagnosis in my life. Don't have,any unnecessary surgeries. Only cause u more problems . My face pulls. My gums hurt. Had wisdom teeth cut out at 18. Two other teeth were impacted and had those cut out. Caused nerve damage and edsers don't heal well. Stay clear from opiates and,benzo. Very addictive and withdrawal is hell. Opiates and,benzos,are now taboo in USA and Drs are not prescribing anymore. Good luck and God Bless

Physical therapy on the neck helped alot

Poor you. I do hope your GP refers you to an ENT specialist in your ares who understands hEDS. You can always google your local hospitals ENT departments, find the specialists names and google them to find out if they have an interest or training in EDS or genetic problems. Hercule Poirot eat you heart out! Remember you have the right to request your GP to refer you to a hospital/ Specialist of your choice. Take an active role in your health care as you are the specialist in you!!!

Your welcome Honey. Gone are the days when Doctors were able to play like God. You know your symptoms and body better than anyone. Didn't realise my throat symptoms required input from an ENT specialist until I saw Dr Hakim. Feels like my throat is closing up, have nasal drip and hoarseness and change of voice at times. We have to be the leading person in our health care as often the GPS are stumped when presented with our myriad of symptoms. Remember they are into treating symptoms not cause. Unless your pathology presents in certain way they often dismiss you. Be strong, be calmly assertive and don't give up as this means you give up on yourself. There are so many lovely supportive people in this group that have your back in times of need.

xx

Haven't yet. They are sending me to an ENT specialist.

I'll let you know when I get my appointment.

Xx

I wish you lots of luck 🌻🌹😙