I dont blame you for feel so frustrated. The doctors never look outside of the box.
I had to go to see a private doctor in london as I was suffering from two things, my neuro told me that. Something was clouding the issues with my diagnosis of MS. He said i have all the symptoms of MS, but then there is something else which is upsetting the puzzle.
I paid 4,000 for loads of tests to be done at breakspeare clinic they are specialists in Lymes. My bloods went to the states. When they came back they said although I didnt have every titer for Lymes, I had certainly MET IT, and was showing a co infection still which although not active should not still have been there, which was a puzzle for them lol…so basically i had 3 markers for Lymes but in England you need 5 i think for diagnosis. I also had a marker for Epstein Barr virus which although not currently active was showing 95, it should have been -5… and there were 2 other viruses i cant spell. Also i had aspiragilliosis showing in my blood jeez anything else and low B12. When i mentioned that to my GP she said well its on normal range for NHS. So privately they seem to worry more about us then NHS. LOL.
Dr Munro at the clinic said it was no wonder why i was feeling so ill. She diagnosed me with all my private MRI scans and a full neuro test which took 30 minutes as having MS and a coinfection of Lymes. She wrote to my neuro, and she wrote to my GP, who actually agreed for me to start on amoxicillin for the lymes. How ever i had a bad herxing reaction and had to stop, i still have the lymes and it still kicks my butt especially if i have to take antibiotics for my constant UTI. After receiving the letter from this doctor my neuro did a full review and one more test and gave me a diagnosis of MS its now on my notes. I also have now too a new one called transient epileptic amnesia. So i went from nothing to 3 major diseases lol… just because i had TO FIGHT for a diagnosis. THREE lol. the amnesia started 2 months after my big relapse with MS.
The thing is too, in uk the NHS only do the basic lymes test. If you have had it chronic which I had, it is hard to see in any of the blood tests. They will nearly all come back negative unless its an infection from that moment.
You have to fight for this Moyna, it sounds to me like that is what you have and it needs to be seen. I think its terrible they dont share this information.
I found on one of my MRI, it showed that my bone marrow was working too hard … i mean wow no one thought to check that out, why ? was it working too hard…I believe it means i have a bad infection or even worse going on but no one bothered to tell me.
It makes you wonder how much else they dont tell you. I bought my medical notes for 50.00, and was shocked at the things they hadnt told me. I even found i had a dodgy 2 stage vault smear, no one told me about that either, and lots of other things, all of which coincidentally fitted with my lymes infection…but no one bothered to join the dots together.
I know we get our treatment free but unless its all straight forward you have had it basically. Sorry for rant, but i went yesterday to my GP as i feel so ill now for 3 weeks, on fire, funny temperatures, burning, pain etc and she just said its your MS i will make an appointment for you to have a follow up with your neuro. That was it, no checking my chest, heart nothing. I know my illness and I feel rotten all day everyday for 3 weeks. MS. Nothing else, cant possibly be anything else.