What happens now

New diagnosis and before diagnosis
1

I was diagnosed last week by the Neuro and told that I will have to have a LP in the next couple of months.

I was introduced to the MS nurse who told me that they would visit soon.

I had loads of bloods taken and the Neuro said the results will go to him.

So can someone tell me what happens now.

Thanks

Yvonne

2

Sorry, I can’t really help as I was diagnosed while in hospital and had my L.P while there and I guess if there is any news re your bloods he will write to you. Did your Neuro discuss DMD’s?. I’m having an MRI on Saturday then my Neuro apt on 08/09 to discuss them. But didn’t your ms nurse advise you of the next steps? I know there is loads to take in and it can be a very distressing and emotional time for most of us. Good luck.

3

He mentioned I was not eligible for DMD’s I presume that is because I have not relapsed ?

All the nurse said was they would be in touch and gave me some leaflets.

4

I was diagnosed as I had 2 relapses both within 3 months of each other and since then have been pretty lucky. What are your symptoms if you haven’t had a relapse?

5

I have a tremor in my left hand and a wonky left leg but can still walk a fair distance atm.

THe MRI showed a large white blob with a couple of small ones as well.

6

Hi Yvonne,

This intrigues me; if you have been diagnosed why do you need a Lumber Punch? This is purely a procedure to help diagnosis and not a good one at that; only tells them something is going on in your body but you know that.

It is possible to be diagnosed without an LP as per the McDonald Criteria. I would ask if you have a definite diagnosis; if you have there is no need to put you through this invasive procedure.

The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a night’s sleep; this is rare.

Good luck.

George

7

Hi George

I am sure that I was diagnosed as the Neuro definitely said that I have MS and allocated me a MS nurse whom said they would visit me in a few weeks.

I am under a Doctor Pearson at Morriston hospital.

My symptoms are very minor compared to what I read on here and I hope they continue that way for many years to be honest.

He did say that at my age 59 I have probably had it for 20 plus years! I have had problems with my leg for at least 5 years but put it down to getting old.My other symptom is a hand tremor that again I have had for over two years from memory.

Yvonne

8

Hi Yvonne,

Yes my luv I suggest you ask a simple question “If I am diagnosed why I need a LP?” As I said its nothing to worry about but if you do not need why go through it.

You seem to have classic ‘Benign’ MS which I would say is more the reason NOT to have an LP. If they say “It’s just to confirm the diagnosis” answer ”no thanks” after all what it does is confirm O bands in your CNS fluid; but not always. Sometimes patients get an all clear when they do have MS.

Suppose you get an all clear; that would leave you more bewildered than ever; what is it?

No darlin there not any treatment anyway; I may be wrong on this but after the age of 60 I think DMDs are not given? Being Benign symptoms don’t worry; eat a good sugar free diet; exercise when you can; laugh and enjoy life. That’s the best reaction free medicine there is.

George

9

By the way 59 old? your just a youngster

10

Hi everyone, I hope you’re all as well as can be. I’m a little worried because I was diagnosed with RRMS on 6th July this year. I was not offered any treatment except three days of steroids as the neuro said I am remitting. I told the neuro that I would like to try DMD but he said I would need to speak to an MS nurse to discuss that. I asked when I would if agreed get DMD & he said not now as I’m remitting but as soon as I relapse again. George on here wrote that people aged 60yrs don’t get them, is this true? I am 60yrs & have been told that I’ve probably had RRMS for many years. I am still having difficulty walking so not sure if the steroids did any good. Any advice would be appreciated, thanks.