Another restless night, another night of worry and I’m sitting here trying to think about what the heck is going on. How can people understand how during the day I’m ‘okish’ yet at night I’m in so much pain…sometimes not even walking.
I really truly believe I have MS. So looking at symptoms and stages I seem to fall more into the SPMS category…I never seem to fully recover.
i read that this stage doesn’t happen for about 10-20 years after a MS diagnosis so I’ve been trying to work out why I don’t seem recover fully.
throught all of last year I had what I now believe to have been relapses every week or two (my main problem was mobility and aching)
then since January this year if got so bad I now don’t work and use crutches for at least 4/5 days in a week and have a wheelchair for going out in when I don’t need to push the baby in the buggy.
so once again I’m back to asking myself how come I’ve gone down hill so fast.
For years and years I’ve had what I always called my ‘crash time’ I’d be fine for a few months then I’d be hit with fatigue spending about a week or two feeling utterly exhausted. I now wonder if this was my RRMS and I have gone undiagnosed and have no progressed into SPMS??
and if I’m this bad so quickly what will I be like in another 6 months? A year?
so sorry to drag on!
hi mrs k
have you seen a neurologist?
if not, ask your GP to refer you.
it will be useful to have a diary of what has been going on with you.
rrms doesn’t have relapses every week or two.
a relapse is when you have a new symptom.
in my own case i had a very big relapse when i was referred.
it did seem to last a long time.
that was in 2008. i have the occasional bad day but even on the “good” days ms makes me know it’s there.
your fatigue sounds like you are doing too much, with a baby you probably are.
try not to worry too much because if it is ms, worrying makes it worse.
make sure that you have time to enjoy your baby.
sending you a virtual hug
carole x
I read that you can be in remission for months or even years. I’d crash out for a bout a week every few months or so.
im having an MRI on my brain, just waiting for the appointment to come through. Doc said he would refer me to neurologist after the scan. I don’t just have the one baby. I have 4 kids altogether and have always been the sort of person that’s always on the go but I eat healthy and look after myself so could never understand why I would suddenly become so tired.
I have so many of the symptoms. To many to list, but I’m scared I will be told it’s all in my head! If it’s not ms it’s something worse. I can’t help but worse and feel like I’m in limbo
Hello Mrs Kel
Carole is quite right saying that MS doesn’t usually manifest with relapses every week or so. Neither does a relapse usually last only a week (although it is possible, just less likely). Generally a relapse is a new symptom (or one you’ve had before that’s partially or completely remitted and returned). To be classed as a relapse it should have lasted for at least 24 hours, so something that appears in the night then goes during the day, would not be classed as a relapse.
It sounds to me that you’ve done some reading and searching on the Internet and decided that many of your symptoms fit an MS diagnosis but ignored those that do not. Once upon a time, we flailed about, maybe looking at whatever books were available in the public library, but without the availability of self diagnosis by Internet. We simply had to wait for tests. It isn’t really possible to decide that you may or may not have MS without a neurologist doing appropriate tests and telling you unequivocally one thing or another.
I’m obviously not saying you don’t have MS, but neither could any of us say that your symptoms fit the diagnosis of RRMS, SPMS or PPMS.
It also seems a little backwards, being referred by your GP for an MRI then being referred to a neurologist. Ordinarily, a GP cannot order an MRI and then effectively analyse the results. Normally, if a GP suspects that something neurological is awry, they refer you to a neurologist who then does tests as appropriate. Having an MRI isn’t the only test which a neurologist uses to diagnose MS, they are also likely to do a lumbar puncture (LP) and maybe a visual evoked potential test (VEP). They would also do a physical examination, testing your reflex responses etc. It’s only when they have completed a whole gamut of tests that they can confirm MS.
And some people have all of these tests and the neurologist is still unable to definitively diagnose MS.
I understand that knowing there is something wrong and wondering whether it’s MS is a frightening place to be. Maybe you should be going back to your GP and asking for a referral to a neurologist.
Best of luck with it. I do hope you get some answers soon.
Sue
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I don’t seem to be able to get across what I’m saying as your replies aren’t right. I’m not saying I’m 100% normal during th fm day then sore at night. Far from it. I wake up stiff from head to toe in soon unable to dress my bottom half. I drag myself out of bed simply because I have no choice. I will start to loosen up a bit but the stiffness and pain never ever goes away. It just gets worse again as the day goes on.
So sorry if I’m confusing everyone. My head is fogged up a ridiculous amount and I’m simply struggling everyday. Sometimes I wonder if I actually have dementia!
Hi
I’m not saying that what you’re experiencing is not MS, or not relapses. It’s just simply that it is beyond any of us, and I suspect beyond your GP too, to correctly identify your current health problems as MS or not MS. Even if your GP sees an MRI scan, they cannot diagnose you with MS. Only a neurologist will diagnose MS. And only then after a battery of tests.
It really does sound as though you have some significant health problem, and of course it may be MS. If your GP gets an MRI done, they will still have to refer you to a neurologist. Surely it is in your interests to be referred to a neurologist first. That is my main point, I’m sorry if I have confused matters by talking about what is or is not a relapse. After all, if you do indeed have MS then it could be progressive rather than RR.
Sue
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I don’t understand why he’s not sending me straight to the neurologist either! My doctor always seems to do things the wrong way round
ive had the blood tests done and he said after MRI on the brain, I’ll then need one on my spine but I don’t know why both couldn’t be done at the same time
I completely agree.
Some people have paid to see a neurologist privately and then managed to get the tests done on the NHS. So all they’ve had to pay for is an initial consultation, they then continue to see the same neuro on the NHS. It essentially (as far as I understand it) is done to get around problems like a slightly reluctant GP. Maybe if someone who has done that could comment on this and explain how they’ve done it??
Sue
Generally if MS is suspected then there will be lesions (scaring/ inflammation) that can be seen on the MRI brain scan, they may possibly scan the neck too (C-spine) at the same time. If the scan comes back no sign of inflammation then a spine MRI may be done.
The other thing is that there are quite a few mimics of MS on MRI such as vitamin B12 deficiency.
Ah that makes sense!
when I had my bloods done I know a vitamin one was done too. Weather it was the B12 or not I couldn’t tell you.
My doctors really do seem useless. I was told that constant pins and needles should be looked into as quickly as possible yet I’ve had it in my legs and feet non stop for nearly 4 months and the last few days it’s been in my hands and a tiny bit in my arms, and I’ve still not been seen
hi again mrs k
pester your gp. tell him/her that you are very worried.
it really isn’t good enough that your primary care practitioner is being so lax.
my present gp is the same although the gp i had in 2008 was brilliant.
good luck
carole x
Mrs K, you can ask for a copy of your blood test results from your GP surgery. They should be able give you a copy - speak to the admin team at your GP surgery.
Many people in the UK are deficient in vitamin D as we don’t get much sun for part of the year. If your vitamin D level is deficient then you could start supplements - you could ask the GP about this.
I’ll give them a call later and ask what sort of vitamin test it was. I know I had liver kidney, full bloody count and thyroid checked and all was fine
Going back to relapses hoping it’s still some help. Here’s it’s useful to get reliable info from MS Society or MS trust (Web sites). To be classed as a relapse symptoms must be 30 days apart and there be no other explanation. The simple explanation for symptoms getting worse through the day is getting tired, I guess. I would think it could be one long relapse. Most of my relapses have been months long. My neuro counted as a relapse my report that (before dx) I at the beginning of autumn I had been considering getting another dog as my current dog was getting too old for interesting walks but I felt cr*p and had given that idea up.
It took six months for me to get to a neuro and that was with a helpful GP.
How is the waiting list for seeing a neuro where you area? If the waiting list is long there may be pressure not to add to it but that’s the only way.
Best wishes.
So in other words i could be having a relapse that started in January?
i don’t know about waiting list as I’ve note been sent to one yet. I know the MRI waiting list is up to 6 weeks
It could be a long relapse, A-Z of MS | MS Trust. MS Society will have similar information but I found that given first.
There was a month or so between my GP’s telling me I’d be referred, to a letter telling me I was on the waiting list.
Thank you. I will have a look at it x
I had a look a that website. Was interesting so thank you for that. One thing that did stick out was the fuzzy feeling in legs. It’s a perfect way to describe what I have along side my pins and needles!