Saw two neuros different diagnoises which do i follow? HELP
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hi guys i really could do with your advice... im in the uk and was diagnoised with trigeminal neauralgia and glossophryngeal neauralgia by my local neurologist who started me on carbamazepine i was already on high doses of lyrica and nortriptyline for migraines which now i feel was the tn all along...anyway i decided to ask my doctor for a second opinion to a professor Zack who is a very specialised in tn so i thought she may have better options for me and maybe a view to surgical options.Well at my appointment she said i did not have tn but tmd??? im in total shock i no my symptoms are being caused by tn....what do i do im devastated a letter will be going to my gp and i dont want my gp to not believe me. I thought she would help me i am in total agony.Do i contact PALS for advice or just not see her again and stay with my origional neuro? My gp wont allow me a third opinion im sure....in the mean time im suffering meds are not controlling symptoms and quality of life is nil! Im devastated any advice would be very grateful thanks
0 likes, 14 replies
paula76255 chantell28219
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I know who you are speaking of as I have had two appointments with her and was not impressed. You know what pain you feel (she said to me the TN pain is the shooting electric shocks only) but I have other pains too and have had for 15 years. Just because this person is a specialist it doesnt mean that she knows more than your neurologist! I saw her last year and last month as I do not want to be on medication (Lyrica disgusting tablet) and the MVD doesnt appeal either. I asked about Botox which is trialled in the USA and supposed to help, but she dismissed this (I had filler to my right cheek last year as that side of my face has dropped and I barely had any pain for weeks and Im convinced the nerve endings were blocked by the filler). Im trying homeopathic remedies (Magnesium Phos, Kali Phos plus a combination) and and was seen by her homeopathic colleague at UCL who told me that if I were in a "happy" place and smiled more he is sure my TN wouldnt be as bad as it is and should try psychotherapy! After 20 mins of listening to this rubbish I said to him I came to see him for help and not to be patronised and left! Just stick with your GP and neurologist (im sure you can have a third, fourth or fifth opinion if you want one?) and dont be fobbed off. People who have never experienced severe face pain have absolutely no idea how devastating it is. We all know how you feel. Paulax
chantell28219 paula76255
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paula76255 chantell28219
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As you have had TN diagnosed and you have evidence of this from your neurosurgeon I cannot see how your GP will take any notice of a letter from the Professor contradicting a detailed scan? Ive seen a couple of neurosurgeons and both suggested surgery if the tablets arent helping. I dont know if you sign up to the TN association UK but they have a helpline 01883 370214 and im sure they can give you more advice. Ask someone to ring for you if you cant speak because of the pain. Theres lots of research going on (just read that in the US that theyre investigating the use of carbon implants to modify nerve signals and deliver pain medication directly to the nerve tissue). I saw a Neil Kitchen at UCLH and he is very good and has a good reputation. Maybe ring his secretary (google for number). I wish I could do more to help. Things will get better. Paula x
chantell28219 paula76255
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The scans i had from the neurologist showed nothing but because im in so much pain and im already on high doses of meds he has referred me to a neurosurgeon whom i have not seen yet im still waiting for an appointment. So you see i have no proof i have tn and im very frightened as to what is going to happen..i have to hope something is done. Do you mean see Neil KItchen privately? doesnt he work with prof Zak? Have they offered you Mvd? sorry for all the questions do you suffer pain in your sinuses/nasal passage and roof of mouth?
paula76255 chantell28219
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paula76255 chantell28219
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alicot chantell28219
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chantell28219 alicot
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alicot chantell28219
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angiegirl chantell28219
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i also was referred to Prof Zack and she said I had a lot of things going on so she referred me to Mr Matharu at the UCLH. Amongst other things my TN was re diagnose do as SUNA have you herd of this. It's very similar to TN and the medication is almost the same. There is very little information to be found about it that is not technical. Well like TN it is awfull and I can't stop worrying and thinking of the pain. I was originally diagnosed in 2005/6.
sorry to waffle on, I really wanted to tell you that Prof Zack is the medical advisor for The TN association UK. She is very highly thought of . My experience of my re diagnosis I'm not sure of but if they can keep my pain under control I don't care what they call it ! I will finish now wishing you good night and good luck with getting your pain controlled.
chantell28219 angiegirl
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thanks for your reply i have heard of Mr Matharu she didnt offer to refer me to anyone i think because i am already under a clininc in uclh for vestibular migraines but i feel its not been migraines all along but tn.Im very frustrated and upset as tmd is not a diagnoises i agree with i dont have many of the symptoms. She did mention SUNCTbut said i dont have all the right symptoms. I do no that Prof Zak is the medical adviser for the tna thats why i asked my gp to refer me to her as i thought she would be the best person to see. Now i feel fobbed off and so so upset im in agony and dont feel that my pain has been taken seriously she asked me to come off carbamazepine i have tried and my pain is through the roof i am not coping and do not know where to turn or what to do.I am seeing my gp this morning so will see what happens. Im glad that your been treated well...i wouldnt of minded if i had been referred somewhere but i havent i need my pain controlled thats all i want. Hope you have a good day xx
chantell28219
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angiegirl chantell28219
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Did you have any help from your GP today ?
keep me posted.
angiegirl chantell28219
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joanna66862 chantell28219
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