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newbie advice plz

advice needed please, untill about 6 mnths ago i did,nt know what ms was. by chance i was listening to a radio show on the subject and they were talking about the symptoms of ms. my ears pricked when the lady with ms talked about numbness in her arms and legs when she woke from sleeping. i too had recently been affected by this so went home and googled the symptoms(i know this is frowned upon by certain people) but i have been suffering all the major symptoms for the last twenty yrs and have been putting them down as well something else eg migraines, stress, over work and so on. so i went to my doctor who ordered blood tests which showed low vitamin d and folic acid. she did some tests for memory and reflexes. the reflexes were fine but the memory ones were not. i had to name as many animals as possible she said i should be able to name at least 21. i could only manage 11 to help me she told me to think of a zoo i said this zoo,s rubbish all the gages are empty Lol.i told her about my memory loss and how i forget things ive done minuets before and how i cant get my words out sometimes or forget what i was saying and about my double vision and how days earlier id woken up blind in one eye. i also told her about my bowl incontinence which i had put down to the two hernia ops i had a few years ago.and the fatigue that means i have to go to bed every day at about four in the afternoon or else i will collapse into a coma like sleep for 12 hrs and the migrain like head aches every month or so that leave me feeling battered for days. after all this she said she did,nt think i have ms but would send me to the neurologist. i saw him this week and took along a list of my symptoms he did some more similar test and also said he did,nt think i have ms but would give me a mri scan to find out whats wrong. i also have difficulty walking and get tremors in my legs.my question is why do they think its not ms when only an mri scan can tell?to me if it quacks like a duck and looks like a duck… !

Hi,

An MS diagnosis is much, much more complicated than: “if it quacks like a duck and looks like a duck…”

In fact, over 100 other conditions “quack like a duck and look like a duck”, yet aren’t MS. But if you start Googling, it’s always the first to come up…

To me, your symptoms don’t sound “typical” of MS, but then it’s a hugely variable disease, so what exactly is: “typical”? I wouldn’t like to say, just from a list of symptoms, whether it is or it isn’t. However, it would be unusual (for MS) for reflexes to be completely unaffected, yet memory so poor.

Yes, MS can affect memory and concentration, but usually quite subtly - not to the extent of not being able to think of any animals at the zoo.

It’s also controversial whether headaches are a symptom of MS - a lot of neuros believe no. I’ve never had headaches in connection with my MS (diagnosed five years and believed to have had it much longer), but I appreciate one case is not ALL MSers.

Another thing that’s odd is that you claim to have suffered from “ALL the major symptoms”.

In people who do have MS, this is extremely rare. Most people have a random selection of symptoms, but not everything. Usually only somebody very severely affected would be unlucky enough to have “everything”, but the fact you’ve been “managing” for 20 years without having reached any kind of crisis point before now suggests that if you do have MS, you’re not among the most severely affected, so it’s odd to have “all” the major symptoms, but to have led a relatively normal life for 20 years.

None of this proves anything at all - it’s just a few things that are odd, and don’t seem typical of MS, which might be why neither your GP nor your neuro so far feel it is a good fit.

I’m not saying at all that nothing’s wrong - something obviously is - but I think it would be hasty to assume, from a radio programme and a bit of Googling, that it’s MS.

You’ve done the right thing by getting it checked out. It’s hard, but the only thing now is patience, and trying not to second-guess. If it is MS, the truth will out eventually, but usually not on a first scan. Even if they see evidence suggestive of MS, it’s usually not enough to proceed straight to diagnosis, as the “multiple” part of multiple sclerosis means they must establish conclusively that it’s an ongoing or recurring thing - i.e. there must not only be damage, but evidence of continuing damage through time. This is not usually provable from a single MRI, as all the damage might have happened at once.

If, on the other hand, your MRI turns out to be clear, I’d say it would make it extremely unlikely you have MS, given your reported 20-year history of symptoms. It’s possible for early-stage scans to be clear, but 20 years would hardly be early stages. It would be very unlikely to have MS for as long as 20 years, but no MRI evidence. MS damage is cumulative (even with the relapsing remitting type that the majority are diagnosed with). So it’s improbable (verging on impossible) that it would leave no trail, even after as long as 20 years. But this is leaping ahead. We don’t know what your scan will show yet.

You will almost certainly know more following that, but not necessarily whether it is MS. The first step will be it shows something or it doesn’t. Only then narrowing down what it is.

Tina

l have had MS for 33yrs - never had memory loss or migraines - bowel and bladder incontinence yes. Also, l hardly sleep - certainly never in the day - and find it hard to get more then 3 hrs a night. The only way to get a diagnosis is by MRI and lumber puncture LP.

Do start taking a high dose Vitd3 as you have deficiency- and all the B Vits. Especially, B12 - which you need for memory and brain functions. Omega 3 - These are things you can do now - whilst waiting for further tests. Lots of diseases do mimic MS - and a B12 deficiency is one. google - Could it be B12 - an epidemic of mis-diagnosis.

Fingers crossed that the outcome will be treatable.

l am following a treatment from a new trial - taking a high dose B7 Biotin - and also B1 Thiamine. There is a facebook group called Biotin for Progressive MS. Many of us have had good results after only a couple of months. Seems we cannot absorb B vits well and need to take very high doses. As they are water-soluble - they are safe - you cannot overdose as it just gets ‘pee’d’ out.

Lets us know how you get on - many folk on here are still waiting for positive diagnosis - whilst some seem to get results very quickly. Postcode Lottery!!

Hi, I had most of the symptoms of PPMS for years and got a 95% diagnosis of it. But NO test ever proved it.

After a few more years, MS was finally ruled out.

I have spastic paraplegia. No cure nor treatment sadly.

pollxx

it is interesting… prior to diagnosis i saw a bunch of white coats.

all were wonderful.

all were instrumental in progressing me through the diagnostic process.

and all would say “i don’t think it is MS but we will run this test anyway…” towards the end of my meeting with them.

then my lesion rich MRI images were produced and i was told “well it seems to be MS. which drug do you fancy going for?”

it is true that many things mimic MS. it is also true that in order to ‘confirm’ MS within reasonable degrees of certainty, a good number of boxes need ticking. for you, the MRI will allow the final box to be ticked (or not).

until then, people should err on the side of optimism. there is no point dwelling on worst case scenarios which might never arise, but if it is indeed MS, then a good old fashioned, plucky, bulldog spirit of positivity and determination will allow you to enjoy as favourable a future as there can be.

so chin up and presume nothing until the complete verdict is in!

good luck with it all!

hi tina, thanks for the reply.

when i said all the major symptoms for the last 20 yrs i did,nt mean all at once but as you said a mixture of symptoms bought on by episodes over the last 20 yrs. some times no symptoms for 2-3 yrs other times every 6 mnths to every month. sorry for not being clearer. ive had eye tests and a ct scan which were fine.and also my sister was diognosed with ms a couple of years ago.

cheers paolo,

thanks for the reply yes your right the old bulldog spirit pulls us through.

thanks every one for the replys,

it was just it had started to seem that the health professionals are reluctant to give a diagnoses of ms for some reason. hopefully i will have the mri scan in the next couple of weeks and go from there.

Hi again,

I have never, ever heard of a patient being given an MS diagnosis without even having an MRI scan - except, of course, back in the days before MRI technology was available, when there was no choice.

I don’t think you have run up against “reluctance to diagnose” at all. You have encountered a perfectly reasonable reluctance to make assumptions, when you have apparently not even had the basic investigations for MS. No neurologist will diagnose on symptoms without an MRI, because of the 100+ other things it might be. Usually they need at least one of visual evoked potentials or lumbar puncture as well, although I have to say, I never had a LP, and my VEPs added nothing to the evidence, as they were normal.

With MS in the family, you do have a slightly increased risk, but it’s still the exception rather than the rule that family members are affected, and doesn’t mean, because of your sister, that what you have must also be MS. Though it’s natural, because of family experience, that it would be the thing uppermost on your mind. It could be something quite unrelated that just happens to have some symptom overlap.

Tina

hi tina

I am not so naive to expect to be diagnosed without a mri scan. i was just wondering why they thought it was,nt ms. i asked my doctor this and she said because nothing showed up in my bloods. i new after 5 mins of research that the only way to tell was with mri and after talking with my sister that vitamin deficiency was also a sign.which did show in my blood tests. i forgot to ask the neurologist but will hopefully see him again soon. it just seemed strange for them to not say why they think i dont have ms.its very frustrating in limbo land as im sure your very aware

kind regards

jason