Forum

Put up and shut up?

Hi… me again Despite paying for a private Neuro appointment a week ago, at which he was unable to look at my MRI scan but had a written description of findings (that he didn’t share with me but I have now retrieved a copy from my GP) I still haven’t received a report of his findings/opinion or my examination and description of symptoms. I’ve left several messages for the Neuro’s secretary but my calls have not been returned. At the time (that appointment already seems a lifetime ago and I’m starting to feel that I imagined it all) he said it sounded very much like MS and that I should keep my NHS appointment at the end of November and in the meantime he would make a referral to an MS nurse. The one person that has returned my call is the secretary to the nurses who told me that yes a referral has been made but I wouldn’t be seeing a nurse until that same appointment with the Neurologist. Although I have written description of the scan and it refers to “demyelinating disease as a strong possibility” the rest means very little to me (I’m no academic) :? I wish somebody would just take the time to explain. I have an appointment with Occupational Health tomorrow and almost feel like a fraud. It all feels a like I’m trapped in a bubble and I’m knocking and shouting for answers but nobody can see or hear me :cry: I am sorry for the self pitying post as I well aware that I’m better off than many others but wanted to share, thank you :slight_smile: xxxx

Hi, you certainly are not self-pitying…you are just trying to understand what is going on with your body and those who are supposed to help us. Of course we have great difficulting translating medic-speak…we didnt study that at school, did we? You deserve better service...paid for or not. But unfortunately this happens and i know how you feel. I went private initially, as there was a 10 month waiting list to see a neuro. That was many years ago and I still dont have a definite dx. fun, innit! luv POllx

MS43 wrote:

That was many years ago and I still don`t have a definite dx. fun, innit! luv POllx

oh Poll, how frustrating that must be for you, still in limbo after years!? In the last couple of hours I have managed to obtain the Neuro report (dated the same day as the appointment), faxed to my GP today by the MS nurse secretary. It was apparently copied to me and my GP but neither of us received it!!! :roll: “… findings make the diagnosis of multiple sclerosis highly likely”… “her clinical presentation is certainly consistent with multiple sclerosis and given her her apparent MRI appearances the diagnosis would seem to be in little doubt.” Now that I understand!! Progress I guess!? :slight_smile: Kirstie x

Not a fraud, no, no, no! Not a self pitying fool not neither… exactly what you are going through is one of the toughest things life will ever chuck your way, seems like you are handling it well! I would say that the report is as close to a Dx as you could wish :roll: for. At least now you are protected by the DDA and your employers have a duty to make ‘reasonable adjustments’ to enable you to return to work and continue in your chosen career. Don’t let OH try and baffle you or box you into a corner - tell them you’ll think about anything they suggest but don’t agree to anything on the spot. Good luck love Clarexxx

If you post or pm me a copy of the MRI report, I’ll do my best to interpret for you. The delay in getting a letter from him will be a backlog on the secretary’s desk. The fact the referral to the nurse has gone through suggests that everything is going along as it should be. Hang in there! Karen x

thanks for the offer Karen I might just do that, but was very surprised to receive a phone call, from the Neurologist himself this morning to apologise for the delay . He confirmed my dx and said we will discuss further at the next appointment in November. I was impressed and a lttle embarrassed that I’d made a bit of a fuss.

Unfortunately the OH appoint didn’t go so well and he made quite a few inappropriate comments (“It’s not surprising you feel low, you’ve had to consider death”!!! Don’t even get me started , that has not even entered my head!), laughed when I described the symptoms in my face (particularly the slight distortion in my face when the muscles seem to go into spasm), and made a list of to dos for me including; accessing a self help web site on CBT; downloading a relaxation/hypnosis CD (that doesn’t seem to exist), and buying a book about liberating yourself from pain.

His parting comment was that he would not need to organise future reviews as he would only ask “Still got MS?”

So it looks like I was worrying unduly and a bit of CBT, hypnosis and self liberation from pain will do the trick lmao

But on a more positive note I will accept his suggestions of keeping a journal and a phased return to work, my Neurologist seems to be helpful, I have a referral (via the Neuro) to the MS Nurse and have a very supportive Manager.

Would have written earlier but as the forum was down for a while I took some much needed time to catch up with friends.

Love and hugs xxx

Well, at least it’s confirmed and the neuro had the decency to call you himself.

The OH deserves a slap! What a t*****! It might be an idea to download or order some info on MS from here and/or the MS Trust websites to take with you next time, or to stick in his pigeon hole if you’d rather not speak to him again .

If you have the time, why not read up a bit on The Equality Law? It’s the one that means that your employer has to make reasonable adjustments for you, etc. By the sounds of that OH, you might need to know it!

Karen x

Yeah I was impressed that the Neuro called me himself and you’ve certainly toned down my opinion of OH yesterday . I have looked at the DDA and other relevant links to refresh my knowledge and am positive my direct line manager will continue to be supportive and fight my corner if necessary. I work for local government so have no doubt that they will also step up when needed (OH I think are independent and contracted in).

I am fortunate that this has not (so far) impacted on my mobilty or abilites other than my memory and energy levels; in that respect I’ve always been one for keeping a diary and endless to do lists and a phased return will help me to get back into the swing of things and I’ve reminded myself to start taking care of me aswell as those around me.

I’ve been really grateful for the support on here and the outlet that it offers and will continue to dip in and out when I’m back to work. I consider myself lucky to have had such a quick diagnosis but I’m positive I’ll have plenty of questions and look forward to making some friends on here and who knows I might reach a stage when I can offer support or words of wisdom xxx

Sorry but what is OH?

Hello Oscar. OH is Occupational health. They are the team of health workers employed by your employer to deal with any health issues that may affect your work, or indeed, any problems in work that may affect your health and do their best to find a solution. Some OH departments are good and some are not so good but the same law, rules and regulations apply to us all. If satisfaction is not found in this department you can appeal and have someone else assess the situation and hopefully offer the best outcome. xx Maria.

Hello Kirstie, glad you made headway with your neuro I am sure you are feeling a bit more informed and less frustrated with the whole thing. Good that Rizzo was going to give a helping hand…you are in a good place for support on here. Good luck to you and keep us all informed…xx Maria.