Oh dear…the plot thickens… I have just returned from my GP regarding my blood work after my appointment which was due today was changed to December 2017! I was advised that my neurologist was on long term sick leave and they could give me an appointment in May. I told them I would organise my own blood work and I would see how it goes - I have since found out this fact is not true. I share my neuro with a close friend whose husband has MS and her daughter is currently awaiting an appointment with him to discuss her treatment after just being.
I found out today that my lymphocyte levels started off at around 2.4 in October last year. They quickly dropped down to 1.25 and remained stable for 6 months. Unfortunately the levels dropped again to 0.52 and I was being monitored by my gp for 3 months (this is because I have to travel quite a distance to the hospital and for the sake of a blood test, its easier to have it done nearby). My levels increased slightly to 0.62 on the 3rd month and I was advised to return to 3 monthly test again. Today my reading is 0.55 & my GP has left it in my hands to contact the hospital again.
I got home at 4.45 and tried all the numbers at the hospital but couldn’t get through to my neuros secretary or the MS nurses and left messages everywhere.
I’m soo cross and really annoyed at the hospitals handling of things. Let’s see what happens tomorrow.
I don’t really understand why no one seems to be bothered that your lymphocytes level has been between 0.5 and 0.6 ish for 6 months.
I agree you need to try again tomorrow. But if you don’t get any further you’ll need to get PALS to get on the case.
I don’t suppose you know your JCV status? If you happen to be JCV negative, there’s less reason to worry. But if you’ve not been tested, then you should be thinking about whether to continue with Tecfidera or come off it. And in general people on Tecfidera aren’t tested for JCV antibodies (this is because it’s the lymphocytopenia that is the risk factor for PML, not the drug itself).
In my area I think we are quite lucky. There is a team of 3 MS nurses who administer Tysabri and Lemtrada and who also run the Tecfidera clinics. There is always one of them available by text message at the very least as they have a mobile phone shared between them for this purpose. In your situation, I’d just get on the phone to them.
Do you have access to any neurology nursing services? An MS nurse? Anyone who can get something sorted for you?
It’s absolutely unconscionable that you are left alone to worry about this. Well sort of alone, I’m worried too.
I don’t have any direct numbers for my MS consultant’s secretary or the MS nurses, just a answering machine service where you leave a message and they get back to you in priority order.
II dont remember if my JVC Levels were checked or not at the outset but my MS nurse will know if I get to speak to her.
I’ve obviously left messages everywhere including with PALS. It is deplorable that I have been left to monitor my own health they way I have! I will push for a better contact number if anyone gets back to me tomorrow.
I’ve spoken to my ms nurse today and I’m booked in to see her to discuss it further on 15th November. Apparently, if youre over 50 years of age the lymphocyte level is highered, which means my levels are now unsatiafactory. So it’s wait and see again.
UPDATE Just back from seeing my MS nurse at Coventry. She apologised and said I should put my complaint in writing as they are seeking extra support from the hospital with regards to more staff and the more errors made the stronger the case! She is pleased I’ve not had any relapses since starting tec 12 months ago but will speak to Mr Shehu with regards my lymphocyte levels and will feed back to me. In the mean time I’m to have another blood test at the end of the month. The interesting thing is that’s my nurse also has ms and has just finished Overcoming Multiple Sclerosis by Professor George Jelineck and appears to be taking similar supplements to myself.