5 years ago
Just diagnosed – so many questions HELP!!

My 44 yr old husband has today been diagnosed with MS. Thats it! No advice on what to expect, so many questions I need to ask can anybody please help me understand what is happening and what lymphocytes and widespread white matter lesions are?

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Lymphocytes are white blood cells which are part of the immune system….the culprit of MS. The lesions are what are apparent from the immune system attack on the myelin of the nerve cells and they show up on the MRI scan that your husband has had. Did they not mention what type they think it is (relapsing remitting/secondary progressive/primary progressive?)
I know exactly the feeling, I was given my diagnosis and then felt like I was just shown the door. I felt abandoned which I’m sorry to say seems to be a common theme. I’m sorry you’ve had that too. Even worse it’s a bank holiday weekend. I suggest on Tuesday ring your GP and ask them for the MS nurse’s contact numbers and don’t get off the phone until they get you it, or at least get you the number of someone else who can. That’s what I did, and then I got on the phone to the neuro’s secretary and asked for the copy of the referral letter so that I knew what he had told me (I was unfortunately alone at my diagnosis and zoned out of the situation!!)

Good luck and take care xxx

Hi there…

Wow, what a Friday for you both. I’ve jumped in here as I’m a 44 year old husband, who was diagnosed with MS this year too. Fortunately for me, my wife has been as supportive as you sound. You are both going to have so many questions over the next few weeks – and you’ve found the right place to be asking them.

As far as the existential “What is happening?” question is concerned: well you’ve just taken the first step on a completely unpredictable path – that may turn out to be extremely bumpy – or way smoother than you’re currently imagining. Whatever, it seems that tackling each step you face with a positive attitude and a sense of humour is just about the best thing you can do from this point on. I know that sounds horribly patronising, but I’m confident that most people on here are going to say something similar…

Good luck, and hopefully see you around…

Mark

Thank you for the reply. I asked what type it was and the stated they did not know but there is also another neurological problem following a severe fall. They dont know what that is either, only that it was causing seizures every other day. These have stopped in the last week since they have put him on an epilepsy drug. I know there are 23 lymphocytes – is that a lot? Does that relate to how far the disease has advanced? The scan shows a large amount of white circles, three of them are very large and dr’s have stated they have grown larger in a week. So grateful to have found a site like this, it seems that Tuesday is a lifetime away.

I’m not sure about the significance of the lymphocyte count to be honest. Bit write down every single question you have, and every one you think of in the next 3 days. Of you can get in touch with the neuro secretary on Tuesday ask that someone calls you as a matter of urgency to answer your questions. The unknown is the worst thing of all but unfortunately that is now the future. As one of the other lovely members of shift.ms said, MS is like riding a roller coaster, backwards, wearing a blindfold.xx

“MS is like riding a roller coaster, backwards, wearing a blindfold”.

What a great quote. Sums up MS so succinctly. I’m just going to make one very small change however.

“MS is like riding a BROKEN roller coaster, backwards, wearing a blindfold”.

Thank you Ophelia and Aardvark, I have had some of my questions answered by you in just a few short minutes and I have to say that we are laughing over some of the things that are happening. Well, we were looking forward to a better year this year but hey ho, we will take each day as it comes and see what happens. At least by finding this site, we realise we are not alone and although I am finding it difficult to talk to people, I have found it much easier to write on here. Thanks again to you and I will re-visit again tomorrow. Good night to you all xx

I would also suggest getting in touch with the MS Society. When I was finally diagnosed I initially felt relief (there was finally a reason) but as it sunk in panic ensued, I phoned the MS helpline and they were fantastic! I can’t thank them enough for helping to get me through a very scary time (and my friends would tell you I’m not the easiest person to help!) they were informative, sympathetic without sounding patronising and generally reassuring. I would definitely recommend that perhaps both you and your husband give them a call, you are both going to be coming at this from different perspectives but both need as much, but different support. Good luck

Hi I think all that has been said so far is fab support and all I can add is “its not how big your lessions are it’s what you do dispite them that counts”
here if you need me
Beany

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