Hello, I'm Rosie. Daughter Louise has no saliva and extreme mouth etc. pain.
May be Hypermobility. Very susceptible to pain and had little benefit from medication although endured many side-effects. Have seen and going to see various specialists. Nearly four months of increasingly bad time but realise that people have suffered for far longer.
Whatever positive we discover I'd be glad to share. Very best wishes to all.
I can’t help but would like to wish your daughter all the best , and get well soon. 😊
Thank you so much, that's very kind. All best wishes to you as well. Rosie.
Hyper mobility (EDS) is very difficult to treat. There are lots of different artificial saliva treatments that gp can prescribe. Is daughter under a specialist for any tests or treatment?
May be a long shot, but have you checked any complementary/alternative therapists? I recently retired from being Bowen Technique/NST specialist, and recall treating someone for head/neck stuff. Suddenly there was a rush of saliva for her. Lymphatic points around the jaw were the key, (which doctors do not usually know about!). In the trade we call it the TMJ work, and if you'd like more info about NST or Bowen plz get in touch again. Fabulous results sometimes! Best wishes. TIMBOW
P.S. Louise says many thanks and she will bear that it mind but, having literally no saliva except sticky catarrh type stuff, she feels that first of all she needs to get help to produce even a little. I still think that what you say is worth pursuing now, but I'm up against it with her at present!Best regards, Rosie.
Which town or area of UK do you/Louise live - sounds like maybe Bristol? I know some practitioners around there and will try suss out who might be good just for a chat or advice.I like your trade name MeditationsLastAct. Makes most look boring!
Me having PSP went to London recently for MRI and some tests, and by 6.30 at Paddington Stn my legs almost seized up with near collapse. So No More London for me either!
My sis, 77, goes to an Exeter clinic/hosp for blood transfusions ....... Small world, aIn't it! TIM bow
That’s so thoughtful. No, not Bristol, which is one of our various destinations with Louise. We’ve recently moved to Watchet in West Somerset, not far from Minehead, and about as close to the Devon border as we were to the Dorset one about ten weeks ago. We moved from a little village near Yeovil to remain near very dear friends/in-laws who had themselves moved from there to Watchet a few months earlier.Then Louise, living in South Wales, became ill and soon worsened.
Zack very sensibly packed them and the essentials into their camper van to stay with our friends (they are also his parents!} and when we arrived, having bought a nearby larger place, they transferred to us.
They have found a little house in Minehead for when Louise feels well enough to complete the move from S.Wales, so it’s quite a saga.
Oh, I chose “Meditations” as I consider it one of the loveliest pieces of music ever written.
Timbow reminds me of the much-missed Tim Brooke-Taylor from Radio 4’s “Just a Minute”!!
Warm regards, Rosie.
I am looking at a list of practitioners in your area. Time has moved on, and I no longer know them! Plz give me ur email address and I will send some information that looks useful.IF you like me to! T
That would be great, thank you!roisingruner@yahoo.co.uk
Best wishes, Rosie.
Thanks for the message. No-one in particular, but we are still trying various avenues. On Monday next, a dental check-up and a Pain Clinic 'phone consultation and a visit in person to a Bristol mouth specialist. In regular touch with GP, very sympathetic but quite naturally out of her depth with this. As a last resort, there is the Pain Clinic at The Shard in London (with whom Louise will have the consultation) but a visit there is likely to be too taxing for her at present. Also the prospect of an injection at the Pain Clinic in Exeter, but that's taking an age to work along the pipeline. We cope with all this because Louise & husband and both sets of parents are either retired or self-employed so no-one has a boss breathing down their neck. One must be thankful for small mercies!
Thanks again for getting in touch.
Very best wishes, Rosie.
Thanks Rosie .... will work on it!
Rosie, Just checking: you are roisingruner@yahoo.co.uk??If that's good I'll send over some info.
My last response seemed to escape before I sent it!
And what's up with Louise? My partner reminded me last night that prescription meds can cause lack of saliva, and we both know that Docs often dont read the warnings!
She said Amytriptaline came up in her mind first, as worst offender.
Check that with the Doc.
There are about 10 practitioners of Bowen / NST (NeuroStructural Integration Technique) in your area, and I found them through wwwBowen Therapy Prof Assoc. I cant vouch for any of them, but Patrick Mohan has been on the scene a good while, and I will try check out others. As with most things length of experience is good, and amount of training. If any have NST as well as Bowen, even better, and FULL practitioner best!
Ask and feel them out. Or go your own way.
Julian Baker I learned from 25+ years ago. He lives Frome(?) works all over Europe, has vast experience (and a big ego!). Good one to tap into. Will look for his contact.
I saw Janie Godfrey on the website. She was also trained by Julian, started 25? yrs ago, so I can commend her also.
Better shut up now, and get soon to bed.
So long and cheers and all that. TIM x
Could she possibly have early onset Sjogren’s disease? I’d definitely rule that out.
Hello, thank you so much for getting in touch. I've lost track of the many consultations and tentative diagnoses, so hadn't realised that this has already been suggested by a medic.! Yes, Louise is waiting for the result of a test for this very condition, and it's interesting that you thought of it. Meanwhile, one or other or both of the two Pain Clinic injections and/or one or more of the numerous medications (who knows!!)seem to be giving her some of her life back after five months of ups & downs and "false dawns" ..... Not long compared to what many have been/are suffering, and I am so grateful to everyone who has contacted me. All the best to you and all.
Kindest regards, Rosie.
AW33E NHS Ill Health Retirement
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