Just diagnosed nearly

I got diagnosed last week after my wife had been telling me for about 3 years I had MS. I finally went to the doctor about it when my balance became noticeably poor at times. I have 8 MS symptoms and have had for a few years. MRI scan indicated MS. I’m waiting on a lumber puncture before they will start treatment. I’m 50 years old had symptoms since mid 40’s. the symptoms i have have never remitted but apart from balance and swallowing have not got noticeably worse. I haven’t been given a final diagnosis but does this sound like progressive MS

Hi
Welcome to the forum, which nobody would have chosen to join, but we are here and try to help and support each, offering advice when we can.

I have progressive and can only tell you my experience but my symptoms remained and varying degrees each day, but you need to wait for the Neuro appointment for verification.

Wishing you all the best.

Pam x

Thanks for responding Pam. I will let you know how I get on

Neurologist gave MS diagnosis at then defined which for me - I had problems with my vision and that was it initially and he said it was ‘benign MS’. The vision got better over about 6 months. A few years on my legs were becoming heavy and spasticity started to affect my driving - MRI and LP confirmed it had moved to RRMS and, again Neurologist had to have the result before it was confirmed.

Hi,
Sorry you’ve had to join us but good info on here.
Look u lumber puncture as it will give advice.
Lie flat for as long as possible and drink full sugar coke. Hopefully this will stop the awful lumber puncture killer headache.
Let us know how you get on.
Jen

Thanks for replying I will let you know how I get on with LP and final diagnosis

Thanks for replying I will let you know how I get on with LP and final diagnosis

10 weeks later and no sign of lumber puncture. Please help. My symptoms are bladder problem going from not needing the toilet to wetting myself almost instantly, hot feet at night, poor balance, very weak leg muscles, occasional swallowing problems, ms hugs waking me at night, left leg occasionally thinking its doing the river dance no sexual interest, left thigh is numb Do i have MS. Im 50 years old and had symptoms for about 6 years they have never gone away and maybe getting a bit worse

Hi. Sorry to hear that. You sound similar to me. I had trouble walking for years and after failing my medical at work I was referred to a neurologist who diagnosed secondary progressive MS and told me that i had probably had it for years.There is so much help available to us though and as you my balance is my main problem as it looks like I’ve been drinking.

. Take care and use the help which is available to you. Kind regards Lawrie

Hello Sean

It seems to me that a) your hospital are really dragging their feet at sorting out the LP, and b) that your neurologist is being a bit ‘belt and braces’, old school about insisting on an LP before giving you a firm diagnosis.

You’ve said that you have definitely got MS symptoms that have been there years and not remitted. (I assume the neuro agreed the symptoms are typical of MS.) Also that you have lesions. Are these in the brain, spine or both? Do you know if they’ve been diagnosed as ‘demyelinating lesions’?

This is the basis for MS diagnosis: McDonald criteria | MS Trust

If you have brain and spine lessons and have been able to demonstrate that you’ve had no relapse and remission pattern, then your neurologist did not need to confirm the diagnosis by LP. Plenty of people have diagnosed MS but after having an LP have been found to be negative for oligoclonal bands. The specific type of MS you seem to be describing is primary progressive. So if you’ve been progressing for several years and have brain and spinal lesions, then an LP is unnecessary.

However, if you don’t have brain and spinal lesions, or the neurologist isn’t certain about the progressive nature, then the LP is necessary.

The need for definitive diagnosis is that you might qualify for the one and only disease modifying drug prescribed for early (15 years or less) PPMS, are able to walk at least 20 metres (with or without an aid) and have verified disease activity on MRI.

In your position, I would contact the neurologists secretary and ask what the delay is on the LP, if s/he knows. Alternatively phone the hospitals appointments team to ask the same. Make sure they know you are suffering with the delay. Not only are you unable to consider (or ask for it to be considered) a DMD, but also other drugs to help with symptoms.

If neither secretary nor appointments office can help, ask the secretary if a phone appointment with the neurologist is possible. That is certainly one of the few (very few), benefits of the last 18 months. Doctors and other NHS professionals are now finding phone appointments to be very effective ways of quickly helping patients.

The delay you’ve had has given you a lot of time to investigate MS and are probably very well informed now about the disease and the diagnostic tools used.

Obviously, the neurologist could be covering themselves with the (possibly unnecessary) LP whilst being cautiously certain you don’t have progressive MS, but are actually in the relapsing remitting /secondary progressive MS cohort. You’d need to ask the neurologist directly what s/he is thinking.

Best of luck.

Sue

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Thanks for that reply Sue
Neurologist said inflammation on brain which usually caused by MS. He never mentioned lesions and i was in shock so didnt ask if he meant that
He said secondary progressive MS but none of my symptoms have remitted. I can handle all my symptoms but my legs feel like collapsing when im on them too long. My health insurance is for private in a public hospital I thought i might have to wait a few weeks

Sean

Hi Sean

It sounds to me that your neurologist is a lousy communicator, doesn’t understand what it must be like to have all that scarifying information chucked at you and is most definitely not a ‘people person’!!

There’s also something I call ‘neurologistitis’. It’s a syndrome where you sit in a room with a neurologist (especially someone who is what’s commonly called a ‘twit’); think you’re following everything that’s said, walk (stumble) out of the room and 5 minutes later remember only about a quarter of what was said. And understandably fail to make sense of that information.

It happens to us all. That’s why you should always have someone else with you at appointments. Preferably not your partner, who might suffer from the same condition, given that the news affects you both equally!

Secondary progressive MS doesn’t seem to fit your symptoms. You’ve said there has never been any remittance from occurrences of symptoms. SPMS has to follow a period of relapsing remitting MS. Often people are diagnosed at the outset with SP, but generally they can relate previous periods where a relapse (new or repeated symptoms) has at least partially or maybe completely remitted (ie got better). What you’ve described is more of a straightforward progressive from the start course.

But it may be that the doctor can tell from the MRI that there are different ages to the lesions (inflammation on the brain which looks like MS would appear as lesions, aka scars). Or if you are ultimately diagnosed with SP, that you can think back and identify times of even mild remission.

If however, the first of these suppositions is true (ie that the neuro can see different ages of lesions), then the LP is definitely unnecessary. If you look back at the McDonald Criteria, you’ll see this is true.

Confused? I’m sorry if my attempt at second guessing your neurologist is making it all worse!

I really hope you can persuade someone (ie a doctor rather than a random stranger on the internet!) to give you some real answers!

Sue

Thanks again Sue I appreciate your response. About 6 years ago my eyesight became very blurry for two weeks then returned to normal. MRI scan then showed nothing. Could this be associated with MS
Sean

It could be, yes. I assume that is one of the things your neurologist knows about? If not, you should mention it, I think. Has your optician when examining your eyes, ever commented on anything unusual about your optic nerve?

I am very sorry that you are having such a worrying time.

Alison

Neurologist knows about it he was the one who saw mri 6 years ago

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Good question; good answer from Alison. And it also helps that someone sensible (ie Alison) seems to agree that you needed at least one relapse and remission for an SP diagnosis. An episode of blurry vision, could have been optic neuritis. It appears that neurologist at that point saw enough to order an MRI scan and presumably has compared old with new scans.

Thus a diagnosis of secondary progressive. And therefore an LP shouldn’t be absolutely necessary, particularly since not everyone diagnosed with MS has oligoclonal bands in their CSF. But maybe the neurologist is still not 100% certain so sees reason for the LP!!

Blimey, I really hope your LP comes soon. More useful possibly would be a sensible conversation with the neurologist. If you manage to get that I suggest you ask directly, ‘are you certain that it’s secondary progressive MS?’ If the answer to that is affirmative, then a follow up question ought to be: ‘is a lumbar puncture really necessary?’

Assuming you get a clear diagnosis, you could ask whether any disease modifying drugs are possible. Anything to avoid further neurological damage that is disabling.

Sue

Thanks for the replies. Neurologist looked at old mri and said he saw nothing wrong with it. Recently told they cannot guarantee lumber puncture in next 10 weeks. Neurologist sent me a booklet on drug i will probably be on tecfidera

@seanfish you need to wait for that Lumber Puncture to have a diagnosis. Keep as relaxed and restful as you can, rest is a prescription you need to cash! Keep safe.

Thanks for that