To be worried about my daughter?

[ElectricalBanana]

I have put this here as I need advice really.
She is 26 and has been ill now for 6 weeks. She thought she had wisdom teeth problems so went to the dentist - not wisdom teeth.

Pain in jaw/ face got worse and face swelled up on one side. She went to gp woh put her on antibiots and who got her an appointment with ent as thought salivary gland blocked. Went to appointment and was admitted. Never clerked in by doc, saw one doc who just asked her to make faces. Nurse took swabs, has a uss on face. Decided infection so iv antibiots. Discharged home on antibiots. No better after another week. Worse. Saw gp again and told " what do you expect us to do?". Made another app for another gp. Gp thinks she has trigeminal neuralgia. So puts her on tegretol and makes app for neurologist. Says it will be about 2 weeks. Puts on top of referral ? Glioma. She has waited for four weeks, been back to gp on many occasions as pain is so bad she is screaming at times. Her face is swollen and she can hardly eat anything. Gp keeps re referring her. I advised her to go to pals at the hospital as this was too long to wait. She has been given 23rd December. 12 weeks after the referral. I don't think she will cope that long... She has come home for the weekend and I am horrified what I see. The meds themselves are making her dr.oopy... She is on gabapentin too. She is walking with a stick and can hardly say a sentence without creasing up in pain.

She lives in London and I am up here in northwest. She goes home tomorrow. Any one give us some advice? Her local hospital is lewisham.
Sorry for any spelling mistakes. I am doing this in the dark on my phone

The smell stuff sounds neurological as well.

I agree with the smell thing being neurological though I'm not medically trained. It different should anything like my friends TN.

OP, can I just ask about dental bcse I had a patient who was admitted to hospital over Xmas with severe pain+++++

They did some unnecessary extractions of unerupted teeth and no improvement. I tested the rest of his teeth, found a dead one, extracted it and no more pain. Please pm me if you'd like some more info.

The smell symptom is called phantosmia and is potentially an important symptom. Please tell DD to mention it to the doctor. Wishing her a speedy return to good health.

I'm not medically trained so can't give any helpful advice but I just wanted to wish you and dd all the luck in the world and I'll be keeping you in my thoughts. It's awful to see your child in pain and not being able to make them better, no matter how old they get. I hope it all comes to a positive conclusion soon.

OP you mentioned that your DH has offered to pay for a private CT scan - I think it would be better to pay for a private appointment with a neurologist first - There is little point in having a CT scan without a specialist to interpret the results.
Give the Secretary of the consultant that is due to see her on the 23rd dec a ring and ask to make a private appointment - if he /she doesn't do private appointments ask her for the name of a consultant who does. She'll probably be seen within a few days as a private patient.

Update( again) she has been to a big London hospital near to where she works to be told the neurologist has gone home...

But I have had a chat with my best friend who is the head of nursing at my local hospital- she has said get a private app instead of the ct MRI scan ( so thank you to the peeps who have suggested this)

She is going to see gp tomorrow and will ask for a private cons. Step dad has said whatever she needs he will pay for it ( just want to say we are poor as church mice but have an almost paid off credit card!)

I am disappointed in the NHS at the mo...always thought they would be there if needed. Up to now they have been fab- DH and his bowel cancer, me with my mega high bp. But now....i have lost all faith.

And to you all who have sent lovely messages and posts thank you. I will keep you updated... You are all on this bloody journey with me now!

Even privately a neurologist has to order the MRI so she would have someone to interprete the results.
In my area only one of the neurologists does private work. In London should be much easier to get seen quickly privately.

electricbanana Ive been following this thread, how is your daughter? Any update?

UPDATE!

we saw the neurologist on the 23rd December (i drove down on the sunday to be with her on the monday and then we drove back in all that awful weather). he was wonderful. he did a really thorough examination and he is pretty certain she has trigeminal neuralgia (cba with sp).

But he has ordered an MRI scan and referred her to the pain clinic.

She walked out of the consult 10 ft taller....she said she felt better already because he understood her. he actually apologised and said she shouldve been seen sooner and he wondered why the GP hadnt organised the MRI in the interim.

Her pain is still terrible but she has gone back to work and is managing to do at least three days a week, work have been amazing with her.

She had a lovely xmas here with us up north just chilling and eating well and being ruined by her mummy.

Thank you for all your support!

I'm so glad your daughter finally got the diagnosis (or thereabouts) that she so needed and that it seems she will get some help. Thank good ness for that. Thank you for updating and best wishes to you both.

Finding my own amazing Dr made ALL the difference to the way I coped with my chronic health problem. Being listened to, believed and given proper, sensible advice and support is like a weight being literally lifted off my shoulders. I suspect you and your Dd feel a bit like this even though she is still suffering the pain poor thing.

Been following this as well, and I'm glad that none of the more sinister conditions are responsible for your daughter's suffering.

I hope the rest of her treatment is speedy and effective.

This is going to sound very trivial and silly, but I remember having blocked sinuses that just radiated pain along my cheekbones and in my ears. That was bloody awful, but nothing compared to your poor DD, so I really sympathise.