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My wife has recently been diagnosed with MS

Hi

My wife has recently been diagnosed with progressive ms, she has had a clinical test, mri scan, visual evokes test and lumbar puncture, the consultant has said that all results are consistant with ms. He has told us there is no cure and treatment can only be given to the symtom at the time i.e. painkillers etc.

We have been told that an appointment will be made to see the consultant in 6 months and that my wife will see a ms nurse in about 4 to 5 weeks.

My wife now feels as if she is in limbo, does she just wait and accept that there is nothing she can do? she is very emotional at the moment, we know that there are 2 types of progressive ms yet we do not know which has been diagnosed.

There has been a steady deterioration in her health over the last 12 months, in particular how far she can walk, loss of balance and eyesight.

Is there any medication or treatment which can slow down the rate of deterioration? Will a small amount of regular exercise help?

We have lots of questions but after leaving the consultant when she was diagnosed, we did not know who to turn to for advice, it just seemed to end abruptly.

I want to be able to reassure her but it is difficult when we dont know what we are dealing with.

First of all welcome to you both and sorry to hear of the diagnosis(dx).

Coming on here will be one of the best things you do.I had my dx in Feb so I can relate to the million and one questions.Unfortunately this isnt going to go away so dont overload on reading just take it a step at a time.

Firstly if you go onto the main ms society site you will find alot of easy to understand info for newly diagnosed people.They have loads of info you can either download or ask to have sent to you. Avoid anything other than ms society or trust websites as there are alot of crackpots out there.

If you read back over the pages on here you will find a wealth of information where the questions you have, have already been answered for other people.

It doesnt matter how daft you think a question is or if you dont understand the abbreviations we use ask you will always get an answer.

You dont have to limit yourself to the newbies bit you can read and post anywhere.

I too am waiting to see the ms nurse but by other peoples comments it seems they are the most helpful in actually getting you help as and when needed…especially if your gp like many has very limited knowledge of ms.

Above all keep talking to each other.You will both of had the wind knocked out of your sails, but together you will be stronger.

Take care both

Pip

Hi there,

I’m sorry to hear of your wife’s diagnosis.

Although there are two types of progressive MS, it would be very unusual to be diagnosed at outset with secondary progressive, as that only ever develops after the patient has spent some time (typically years) with relapsing remitting MS.

Unless it is felt your wife has in fact had RRMS for a number of years, but this went undiagnosed, she couldn’t be secondary progressive now.

Therefore there’s a very high probability (almost certain, I’d say), that it’s primary progressive.

As far as I know, there are no licensed drugs that have been shown to have any effect on the progression of primary progressive. There are, however, numerous drugs targeting the various symptoms, and it is probably these the MS nurse will be able to help with.

It’s important to remember that ALL forms of MS can vary hugely from person to person, so when researching on the internet, bear in mind that not all the bad things you read about will definitely happen to your wife, and even those that do might not be for years.

Yes, “sensible” exercise, within the person’s capabilities, is beneficial for pretty much everyone with MS. Like everything else, it’s not a cure, but certainly helps preserve and make the most of whatever function someone still has.

Again, the MS nurse may be able to help with referral to specialist physiotherapists.

Hope this helps,

Tina

Hi there, I was dx with PPMS in Dec 2011 and understand all the worry and anxiety your wife and you must be suffering. I too have found that my balance and problems with my legs have deteriorated quite significantly over the last year. I don’t have any problems with my eyesight (at the moment). My MS specialist told me that he didn’t need to see me again as there is nothing he can do for me - not even a follow-up appointment. I was just given a card with the MS nurse’s number on it and told to get on with it. Most of the time I cope OK but I’m feeling rather sad at the moment as I’m no longer the person I was. One does suffer from grief. Google the 5 stages of grief. This may help you both to understand her feelings. We are always on here to support each other and can always identify with how other MS sufferers feel. If you need any help, please ask. Thinking of you both, Teresa xx

Hello, and welcome

Sorry to hear of your news, and the way the neurologist has dealt with it. Although your wife appears to have primary progressive MS (PPMS) and there aren’t any official treatments for this at the moment (there are some ongoing trials), there are things that she can do to help. None of these has any strong scientific evidence to support them, but I know if I were PPMS, I would certainly try them!

  • Vitamin D3. There is little doubt that D3 is involved in the development of MS, but recent evidence is beginning to show that it may also be important in the course of MS so more and more neuros and MS nurses are recommending that MSers take a hefty supplement (5,000iu a day is common). PPMSers also tend to have particularly low levels of D3 which can cause all sorts of problems with joints, muscles and walking so it would probably be a good idea for your wife to get her level checked, and even if it’s normal to take a supplement.

  • LDN, low dose naltrexone (google ldnresearchtrust). Most neurologists and GPs do not approve of this because it has not been trialled, but some MSers find that it helps with both their symptoms and their progression. It is certainly worth a try I would think.

  • Diet. Most neuros will tell patients to eat a healthy, balanced diet with extra oily fish. Some MSers go further and follow things like Jelinek. I’m not a fan, but there is some evidence that it can help and, if you can stick to it, it certainly might be worth trying.

  • Exercise. It is really important to stay as fit and flexible as possible. Stretching can help with spasticity and keeping fit will help your body generally.

  • HBOT (hyperbaric oxygen treatment). There is no evidence that this helps with MS, but there are some small studies showing that it helps some people with spasticity and bladder problems. Google MS Therapy Centres for more info.

I’ve probably missed stuff off, but that’s probably more than enough to be getting on with! One thing, there are some clinical trials going on for PPMSers. Have a look at the multiple sclerosis research blogspot - it’s a great source of information that is written by real experts.

Btw, have you got critical health cover (it could be in the small print of your mortgage)? MS is a claimable condition.

Best of luck,

Karen x

My diagnosis came straight in with SPMS so it is possible.

You’ve had some excellent advice already. One thing I would add is that progressive MS can plateau so there is no inevitability with it.

The two things I found most difficult to deal with is the lack of treatment for the MS itself, although that is changing, and the unpredictability of the disease.

We all have to find our own way of dealing with this and what works for one may not work for another. I find my MS nurse and physio invaluable sources of support. I see a physio who specialises in neurological conditions, she is brilliant and always coming up with new ideas for self abuse . Currently I attend the local gym through the GP referral scheme. I also attend my local MS Therapy Centre for HBOT. HBOT is controversial and I won’t go into that but the therapy centre offers a range of treatments for people with MS including physio, counselling, reflexology, yoga… It is also a good venue for meeting and socialising.

Be kind to yourselves, it can be overwhelming at first but you will come through this. There is a life for you both after diagnosis, you just don’t know what it is yet.

Good Luck to you both!