Doctors Help Thankyou

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I went to the doctors Friday to get some help for TN. I have gabapentine and asked if we should be finding out the cause , re, can I see a neurologist. She replied no, we don't know the cause. I looked at her in amazement wondering if I was not hearing her properly. She then said again ,we don't know the cause .She then went onto say that it may go tomorrow and never come back. I was gobsmacked and angry.. I could not speak so got up to leave and as I walked to the door I turned and said, oh well! It's onwards and upwards then. Unbelievable!!

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  • Posted

    Yes the firs GP I saw was useless too. I now see a locus GP who is much better and can see how dreadful I feel. Also apparently British surgeries are 

    rewarded for the least hospital referrals they make! Our wonderful NHS is a mess! Rant over!!!

    My advice is try a different GP at the surgery and tell them you want a referral to the neurologist, don't ask. I do believe that some of the neurologist know more about TN as there has been more research into it. It's horrible not being taken seriously. Good Luck! X

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  • Posted

    Julia,

    True direct causes not completely understood. In my case damage from leasons on mylin sheath surrounding brain is a good bet. That is attributed to my MS, but everyone is different. Some have nerve compression etc. Be glad science is this far !

    eddie13

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  • Posted

    I feel your frustration. I live Scotland and going through the difficulties of nhs. First symptoms in November last year and went to the doctors in December. Went 3 times in a short period of time because I couldn't cope with the pain. Prescribed gabapentin and referral made to neurologist in January. Seen in May and referred mri scan due to weakness and reduced reflexes in right arm (although no one has told me why).still waiting although it's been 7 weeks since neurologist saw me. Saw gp last week and asked him to explAin diagnosis who said it's good and baby news. We've diagnosis of trigeminal neuralgia which can be sore and quite frankly it's just annoying and its nothing too serious to worry about. The attitude of the gp made me so angry.he obviously has never had it! Hopefully you get more sympathy then me on your next visit
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  • Posted

    Hi Julia, I had a similar experience with my doctor, I found out more about TN on-line and here on this forum.  I had my first bout if TN in January it disappeared by March and reappeared last week.  Mine was definitely brought on by dental work.  One of the three nerves comes from your ear goes along your gum and up the side of your nose.  That is where my pain is.  I just have to blow my nose and I am in tears. At the moment I am on carbmazepine 100mg twice a day but have called the doctor to see if I can increase it.  If you want to go down the nature line then I have heard acupuncture helps.  My doctor said I was the only person he had seen with the condition for years!
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  • Posted

    Thank you for all your comments. X
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  • Posted

    some doctors do  not  care   because they  can fixed you  you  have go through 15 doctors
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  • Posted

    Gabepentine will only help until they give you the max dose and even then, might not work for you. I have had TN twice, on each side of my face, once at 29, and 15 years later at 44. I opted for MVD (Micro vascular Decompression) both times and have been pain free. There are several options, please research them. The pains star as minor pings, then shocks, then comes the excruciating suicidal pain. And If at any time you get a break from any pain, it comes back with a vengeance. This disease will turn your life upside down. Please find a neurologist that is experienced with TN. And I don't think they really know the cause,but, are learning more on ways of helping us improve and like in my case be able to live pain free. Good luck and god bless, I really pray you find the best option for you. And believe me meds are not the best option. MVD is one of the most invasive surgeries and the recovery time is longer. But, the last I heard it has the highest percentage of a better outcome. I hope I helped you somewhat and please keep in contact with me, I would love to hear you are better and pain free.
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