@APhull 

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APhull

How can I get help and a diagnosis?!!!

Hi everyone, I've just joined this forum as I don't have a clue where to start! Sorry for the long post... 3 years ago, I suffered severe jaw pain on holiday. The pain then went to my sinus and head. After a year of suffering, I was told they were migraines. Which confused me as my jaw and mouth would ache too. The GP mentioned Trigeminal Neuralgia which made a lot of sense. I then had the occipital nerve numbed by a neurologist which helped for a year. Since last year, I started getting the face and head pains again. Severely. This time with pins and needles in my body. Things progressed to severed fatigue, confusion, forgetting so much and excruciating limb pains. I'd wake up and would be in agony. I have days where my body feels so weak and odd sensations running around like I have ants crawling everywhere. When it's too hot, I've had attacks where my hands shake and I loose my speech. My mind is all foggy and I went back to the GP when I couldn't remember my card pin numbers or my daughter's DOB. I only have 2 children and my husband said it's so out of character. I have 20 members in my close family and know everyone's birthdays let alone my own child's. I find it hard to concentrate and focus. My eyes have stabbing pain in them occasionally and I see blurry. I'm always exhausted. I saw a neurologist privately who dismissed me in minutes saying I don't have MS because I'm well balanced. He sent me to do some tests and I'm seeing him in a couple of weeks only to get the results. I don't really want to go back and pay him £200 for 15 mins of dismissal. I'm at my wit's end. My husband is in the medical sector and sees my decline too. My family have noticed a huge change too. I sleep well and wake up like I havent slept a wink. My GP can't diagnose me. Can anyone recommend a neurologist please as I really want to know what's going on. Problem is, TG is apparently an early symptom of MS and I don't know which to tackle first. I've booked another neurologist for end of July but I'm so desperate to be seen to and advised as I'm 38 with 2 young children and trying to run my own business with these horrible symptoms that mean I can't get out of bed some days! Really appreciate any advice. Thank you.
@mutley64

@APhull did the private neurologist refer you for an MRI scan ? Did he tell you what tests he was doing and what he was looking for if he doesn't think it's MS ? Obviously something is going on and it needs to be investigated. Currently the NHS waiting list for Neurology is appalling so you are better off going private in the first instance. Wait and see what the tests the neurologist did reveal. Don't give up if your not satisfied once the Neurologist comes back to you go back to your GP and insist on further investigations. Take care

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@MiloBear

It's very frustrating. I can relate to the unfair dismissal. My only advice would be to advocate for yourself. Don't be afraid to stand up for yourself and demand acknowledgement. If I didn't then I would never of got my diagnosis. I spoke to my MS team about it and they said its very common. People get dismissed all the time. Assert your needs and make sure you're getting the right treatment. If you decide to go the NHS route assert you need to see the neurologist and ask to be put onto the cancellation list. It will get you an appointment much quicker. Good luck 🤞