So I first get a letter from my neurologist saying the diagnosis is ? Demyelinating disease ? Polyneuropathy Then today I get a letter with my blood results which are all normal, then he goes on to say that this is quite reassuring. I don’t feel very reassured lol not with symptoms getting worse and no let up in the symptoms since September. The fact the blood test show nothing wrong makes me more concerned that it is MS My nerve test results were also normal which I think may rule out the polyneuropathy. He did say he would see me in three months which should be within the next three weeks but I still haven’t had an appointment! it’s all very frustrating and painful and tiring. I haven’t been properly at work since august and am now facing a halving of my salary, without a name for what’s wrong I find it very difficult to explain or justify with colleagues and managers what’s happening, they seem to think I should have found out by now. How do others explain it, I look fine which is not helpful.
Hi Billie,
I think it would probably be a good idea to chase your appointment. Sadly, it can take some time to get a diagnosis (even if it turns out not to be MS), which is not helpful when you have to consider the workings of everyday life…
Unfortunately, looks can be deceiving, and I’m sure that many of us on here have been in your position of looking fine on the outside and feeling the need to justify ourselves to others.
I think that all you can do for now is try to make it clear to work that these things do take time, and that you are doing everything that you can to speed the process along (why would you want to be in ‘limbo’ for any longer than necessary?). If they aren’t happy with that, then unless they’re offering to pay for you to see someone privately (it can speed the process up a bit) then you’re at an impasse, I’m afraid, for the time being.
It is frustrating, yes, but the extra stress/pressure really won’t be helping, especially if it does turn out to be MS. Do you have an Occupational Health specialist at work that you can talk to about it? If they’re putting pressure on you while you’re actually off sick, they could be making putting themselves in a very awkward position and if you are a member of a union it may be worth having a word with them.
Mags xx
I work for the nhs lol and my occy health dept have been a joke to say the least. I have got some good advice now and have a plan to deal with work so feel a bit more in control of that, and tomorrow I am ringing the neurology secretary to chase this elusive appointment. Thanks for the reply mags x
Well finally got through to neurology sec and I have my review on 10th march they have appear entry sent a letter, which has yet to arrive. Glad I rang even though it feels like a life time away.
When I finally get my neuros sec ,apperantly she has sent letters that never arrive,and she’s even phoned me before to discuss update, that I never recall. Maybe my memorie is going or maybe one of us is telling PORKYS Keep chasing Good luck Gray x