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First Steps after diagnosis

Hello Im a 38 year old women whos life has been terrible for a year, i wont bore you with all the details i will just put a little run down on whats been happening,Its my first time on here i hope it will help you and help me to. It started with toothache, i had 2 teeth out and had 3 holes drilled through my jaw bone. All this time i was suffering with tooth pain itching and what felt like insects and a red hot poker in my gums cheeks and the right side of my face. I work in a call center taking 800 to 900 calls a day. so every day i came home crying to my boyfriend as i was in so much pain. I have been to the Maxiofacial unit, Sinus unit and finally Neurology unit where i finally met someone who recognised the pain. He said id got Trigeminal Neurolgia put me on some medication which took the edge off but the pain still there, ive had 2 MRI Scans and a CT Scan. He said id got to have a MRI around the Nerve. In August still in pain i recieved a letter saying id got demylinating disease. He told me there wasnt alot they could do as he wasnt a specialist so he refered me to the MS clinic as QMC. When i walked out the hospital i just broke down, my doctor said i was having a meltdown, it was shocking i couldnt cope anymore all i wanted was a quick fix. i was signed off from work and still off at the moment which is helping as the job makes it worse with taking all them calls. My doctor changed my medication which again took the edge off but pain still there and the side effects were quite bad seeing blue crystals falling from the ceiling, So the begining of November i attended the MS Clinic, the doctor was really nice. She diagnosed me with MS, She said the MS was around the Trigeminal Nerve and this was why i was in pain, and the dentist had disrupted it. She took me off the tablets and have put me on some different ones which is doing more than the rest have, i still feel like i have something in my face but the pain is a little better and im trying to concentrate on other things which is helping. I feel like i have a bit of brain block as i still havent accepted it and im not sure how to feel, i feel numb i suppose, i still havent been to work as i feel it makes it worse. This year as been a learning curve for me,Its been hell but i appreciate things and people more, My boyfriend and mum and dad have been so supportive and there everytime ive needed them. This is my first step to accepting it.

Hi and welcome :slight_smile: Sorry to hear of your diagnosis, must have been a shock. Glad to hear the pain is under control now, I’ve heard that TN pain is awful. It can take a long time to get your head round what the dx means for you, it can be a bit of a roller coaster of emotion! Plenty of people in this forum who you can chat to and sounds like you have a good support network in place, which helps. In time, with small steps, you will adjust to your new normal. Has your neuro discussed any disease modifying drugs with you? Take care of yourself. Lx

Hiya Thanks for your reply and welcome. Ive been on Pregablon, Tegretol and now on Gagapentin which are taking the insect feeling away.And are making the pain easier but still there it, feels like somethings in my face, really bizare. Are these drugs disease modifying drugs? As they havent mentioned disease modifying to me. Hope your ok.

Sorry for the delay, your post didn’t show up? Probably my computer! No the pain drugs (gabapentin etc.) are not disease modifying drugs (dmd’s). Dmd’s are a separate group of drugs that are prescribed to reduce the severity and frequency of relapses. There are some criteria that have to be met first. Worth asking your neuro about your eligibility though. The website ‘ms decisions’ has lots of useful information and explains things far better than I could! Hope that helps, Lx

Thank you for the information. Yes i read abit on the internet about meeting the criteria. Yes will definatley ask when go to the hospital again. They said its just unfortunate that the pains been for a year as they think the dentist made it worse. irratated it, in your first message you put new normal. i think your right about that. i keep wishing to go back to normal but i think this is my new normal. Very hard to accept having MS but what else can i do just need to get an even balance on the tablets to control the pain. Youve been very helpful and thank you very much. Take Care and hope your ok.

What a shame the dentist aggravated things, but I suppose there was no way to know. Hopefully if you can get on some treatment you will get a little control back. Yes it does take a while to get adjusted. I was dx in Feb and all though I am coping ok I still have days when I struggle with it all. Guess that’s just our human nature. I just try and stay positive and enjoy the good times. Keep talking to people on here too, there is always someone who can relate to how you are really feeling. Something that I’ve found friends and family can struggle with, through no fault of their own. Glad I could help :slight_smile: Lx

What a shame the dentist aggravated things, but I suppose there was no way to know. Hopefully if you can get on some treatment you will get a little control back. Yes it does take a while to get adjusted. I was dx in Feb and all though I am coping ok I still have days when I struggle with it all. Guess that’s just our human nature. I just try and stay positive and enjoy the good times. Keep talking to people on here too, there is always someone who can relate to how you are really feeling. Something that I’ve found friends and family can struggle with, through no fault of their own. Glad I could help :slight_smile: Lx