husband diagnosed with MS - advice please

Ted_Hutchinson

The MHC2TA gene influences predisposition to RA and MS,

The above article shows certain genes do predispose some people to more readily acquire certain autoimmune conditions. However, you have to appreciate that this is only if other mutlifactorial conditions also exist. So it is by no means certain.

Remember the level of vitamin d status not only influences your autoimmune response at the time of the predisposing infection (if that is what the trigger to MS is proved to be) but also governs the rate of progress of the condition should you allow your vitamin d status to be compromised. See directms org for more information

Quackers

lessonlearned wrote:

Tomorrow is the day when we see my husband's consultant. I am sure I should be preparing lots of questions but so far haven't really thought far very ahead.

Lots of luck & best wishes for your visit tomorrow. Try and ask as many questions as you can - maybe jot some down - I've learnt this over time as I always forget to ask questions when we take my daughter to the hospital - its only when we leave I remember :rolleyes:

If you do not get round to asking the questions you wanted to or think of some more you could always ask here - just in case someone could help.

My husband also has an 'ms contact nurse' who he can talk to if he has specific questions or just wants a chat. She is really nice and helpful.

I hope all goes ok & hope you remember to post back to let us know how you are doing.

Quackers

lessonlearned

Well now - I'm not really sure what to say or think.

We saw our GP at 10.30 this morning who discussed my husband's condition in terms of MS, and he painted a fairly gloomy picture.

At 1.30 we saw my husband's consultant neurologist. He bombarded us with information and it was quite difficult to take it all in (despite taking notes).

He said that all the tests are now in and that my husband does not have MS. Both the lumbar puncture and the evoked reaction tests were negative and there are no signs of MS cellular activity.

His diagnosis was of ADEM - Accute Disseminated Encephalomyeltis. He said he was of the opinion that this was a "one-off" episode and that although a full recovery would take up to two years, it was unlikely that my husband would suffer a recurrence.

So on that basis the prognosis looks very good indeed and it would appear that my husband is one very lucky man. (I'm assuming that our GP hadn't received all the final notes from the Consultant - I know these things can take ages).

However, I've been reading up a bit on the internet (I know, I know -"A little knowledge is a dangerous thing"). I must admit that I now feel very confused because although the information I have found is in agreement with the consultant's diagnosis, there is also quite a bit to suggest that ADEM can be a precursor to MS. (At least that was my understanding. I could of course have misunderstood all the data and be jumping to the wrong conclusions).

I hope this doesn't sound too cheeky but if anyone knows anything about ADEM I would love to hear from you.

Anyway, the state of play is my husband will now need a follow-up MRI scan and a PET scan. The MRI is primarily to check how my husband's recovery is progressing. The Consultant is also checking for tumours - both in the brain and body (hence the PET scan) - which may be causing demyelination. He (the Consultant) seems to think it unlikely that he will find any but just wants to make sure.

I have to say I am really impressed with our Consultant - he seems very thorough in his investigations and to be doing everything he can to help my husband. In fact all the medics we've had dealings with have been superb.

I guess we'll just have to be wait and see. At the moment it seems that the prognosis is good and that my husband is very, very fortunate. If this turns out not to be the case and that ADEM does come back again or develops into MS then I guess we need to think of this time as a temporary reprieve and enjoy what we have. After all - none of us really knows what the future holds. Carpe Deum as they say.

Anyway, we've decided to go to Spain next week for a couple of weeks and have a break from hospitals and tests. (It will be interesting to see if the sun helps my husband or not).

Sorry it's such a long post but you've all been so kind with your good wishes and concerned interest I thought I would try and tell you everthing we know.

Thanks for all your support and messages of goodwill. I think the MSE family is wonderful.

annie12

Lessonlearned, it sounds as though your consultant is good
I hope it turns out not to be MS, but I'm sure you'll deal with it if it is.
I don't know anything about ADEM so I'm afraid I can't help there.
I think going to Spain is an excellent decision, if nothing else, the rest will do you both good!

Take care
annie. xx

Bossyboots

The causes of MS are not fully understood but there are indicators that are considered as pre-cursors. This does not mean MS is inevitable but will be pin pointed backwards if a pre-cursor is there.

I am glad your GP has given you the gloomy picture about MS. I constructed and deleted several answers to this thread because everyone was giving you upbeat and positive responses about anecdotal MS stories of patients who are still active. This is not the only way MS goes and I was concerned that you were going to be given a huge blow, but in the end I couldn't bring myself to post. You are right to make the most of your future. I hope your husband goes on to recover fully but would caution you to keep an eye on his symptoms in the coming years. I have a relative with worst case scenario MS and things have become very difficult.

Ted_Hutchinson

Acute disseminated encephalomyelitis or multiple sclerosis: is a full publication which concludes the only truly reliable diagnostic test remains time.
In order to buy as much time as possible, may I remind you of the Supplement list from directms org

annie12

Bossyboots wrote:

I am glad your GP has given you the gloomy picture about MS.

Thanks for that :sad:

The people who are the most positive you'll find, are the people that actually HAVE MS, sorry but you're post has upset me.

Bossyboots

annie12 wrote:

Thanks for that :sad:

The people who are the most positive you'll find, are the people that actually HAVE MS, sorry but you're post has upset me.

That wasn't my intention but you have quoted that line out of context. The OP has only been given one side of the MS story up until now and finding out things can and do go differently can be a huge blow which was why I had never posted on here before. Being armed with the facts from the start means you can be prepared and deal with things that come along. There is so much we could have done differently for our young relative had we been in possession of the full picture about what could happen.

[Deleted User]

What could be worse than bombarding a newly diagnosed person and their family with all the worst things so soon after diagnosis?

There is NOTHING you or anyone can do for a patient with MS IMMEDIATELY after diagnosis whether you are given the full horrors of what MIGHT happen or not.

I too, could have posted about people I know, young and not so young, with MS - one who has since died of it and before the age of 30.

You can have as many facts or anecdotal stories as you like - despite there being different types of MS, it is still specific to the individual - in the same way that cancer and other disease is. There will always be people who are given a bad prognosis who will prove the medics wrong - and vice versa.

Removing upbeat posts will change nothing for the OP's husband. His illness will be specific to him. Should we have all posted the worst of things as well?

I don't think so. Maybe in time yes - But not so soon after diagnosis. As I said, there is nothing anyone can do to change the course of things whether they know the full facts or not.

lessonlearned

Thanks Ted for that very informative link about ADEM. It's very useful to be able to read up something for yourself.

Although not medically trained I do have a keen intest in medicine and have taught myself quite a lot both about traditional western style medicine and complementary therapies, herbal medicine etc. Don't worry I wouldn't dream of "practising" my skills on anyone without adivce - apart from aromatherapy massages which I am trained to do.

I had already worked out in my own mind that despite all the good vibes from the Consultant that, without being unduly negative, time would tell lin the end and that it really would be a case of wait and see. In the meantime, I will take on board all the information about supplements, diet, exercise, massage etc so that I can help my husband to be as healthy as possible for as long as possible. As you say, Ted, "buying time".

Thanks to everyone else for all your advice, comments and personal histories - yes even the worst case scenarios. I am one of those people who simply "has to know" - a complete control freak I'm afraid.

Now that I have a diagnosis (albeit one that might be subject to change) I feel much calmer. It also means my husband and I can think more clearly and make adjustments to our lifestyles.

In the meantime, we are going to go to Spain, have a rest and a think.

Thanks again everyone.