Been to see Gp again today, for Amtriptyline review. Had a numb tongue and loss of taste since before I started Amtriptyline. She said my tongue was white and has given me some Nystatin, going to redo all my bloods and lest for diabetes again, last result 12 months ago was 4.5. But been peeing for England and craving sugar. Also asked her to test Vit D 3 levels, which she said she would do but calcium levels normal? Any how, got copies of Rheumatotgist and Neurogist reports. It says Positive ANA 1:1280, negative ENA and DNA, positive PANCA, but negative MPU and PR3 titres, also mild Lymphopenia at 0.98, any one able to translate this? See says that despite clear MRI she thinks it is MS and that Neuro will keep an eye on me and do yearly MRI’s. Not sure how I feel about this?
Hi Apple Pad, very frustrating for you. As you know, many people do have to wait ages to find out what’s going on. It’s very positive though that your neuro hasn’t dismissed you and will continue with annual MRI. Very difficult to dx MS without lesions showing but good that they will continue looking.
Sorry can’t help with blood test info, but hopefully by ‘bumping you up’ someone else will.
Have you tried googling each of the tests? That can be helpful (keeping in mind that there’s a lot of cr*p on the internet… but check out good sites… ie NHS).
Remember, one day at a time.
Pat x
You can probably find out about your blood tests on here: http://www.labtestsonline.org.uk/
It must be horribly frustrating not to get some proper answers re a diagnosis, but it’s got to be good that they are staying interested. Their hands are a bit tied with the clear MRI, but perhaps you could push for a better one? If there is a 3T scanner in your area, perhaps they could refer you there? And ask for thinner slices than normal? Worth asking maybe.
The calcium / D3 thing is because D3 influences the absorption of calcium so, if your D3 was low, your calcium may be low too. Still get it tested though - it’s best for MSers to keep their D3 levels higher than the NHS recommends.
Karen x
Thanks for the ‘bump’ Had a look on that site and it does answer some questions, thank you. I live in West Yorkshire and my local hospital has an old scanner been told that Leeds is a specialist MS site and has a newer scanner. So will ask if I can have my next scan there.