Last reply 2 weeks ago
Diagnosis advice

Hey wondering if you helpful folks can give me some advice please, sorry if this post may be a bit long.
I have had a lot of symptoms of ms and finally got to see a neuro in January last year had a spinal mri and it came back clear.
My hips and legs are so sore I have numbness in my toes and at nite my lower legs and feet burn like they are on fire 🔥
My balance is all over the place and I have a weakness on my right side, I walk with a limp most days as my leg drags.
I have severe fatigue about 4 hours energy and I need to sleep 😴 recently I had optic neuritis treated with steroids and been signed off my work, I tend to stagger a lot too.
There is family history of ms and the neuro said that all my symptoms are pointing towards ms but every test is coming back clear, same with recent brain mri she couldn’t find any lesions plan is now to do a lumbar puncture to check for O bands.
My spinal mri will be a year in jan and my symptoms are so much worse since then, could lesions show up within a year ? I just want a diagnosis as I am living in limbo not knowing the cause of being in pain and all of these things going on …… my Dr also thinks it’s ms.

Am on gabapentin 600mg three times a day and vitamin D

Any advice would be much appreciated Xx

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stumbler
3 weeks ago

@niteowl , MS is a b*gger to diagnose. Specific criteria have to be met before a formal diagnosis can be given (https://www.mstrust.org.uk/a-z/mcdonald-criteria).

The other issue is that an MRI doesn’t show everything that is going on.

It does sound like you’re en route to MS. The symptoms and family connection do seem to point that way.

As far as the neuropathic pain is concerned, keep talking to your Doctor. This kind of pain relief is a case of finding the right medication that works for you and at what dose.

Also, see if you can get a referral to a Neuro-physio, to assess your walking.


vixen
3 weeks ago

Hello you poor @niteowl, what a terrible time for you. Waiting is just the worst. Do you have an appointment for a lumbar puncture yet? For most that’s the final piece of the jigsaw puzzle. Hard though it is, keep a healthy diet and rest as much as your body is telling you too. I hope you’ve got support around you. Keep badgering the medical world for appointments. I hope you get some answers soon x


niteowl
3 weeks ago

Hi @stumbler, yes I feel that’s what is wrong with me too neuro said if she didn’t look at the test results she would have said definitely ms but the results have confused her @vixen yes waiting is the worst neuro said it would be before Christmas and she is going to arrange for the visual evoked potentials to check the damage done by the optic neuritis and do the lumbar puncture at the same time as hospital is so far away it’s two hours by car and 4 by train 😬….. I have been signed off work for ages and feel so guilty everyone keeps asking what is wrong with my leg and I have no answers my poor horse gets the blame all the time 🙈🐎
I am trying to keep as active as I can as I always led a busy life but now I realise when I have to listen to my body Xx


stumbler
3 weeks ago

@niteowl , don’t feel guilty. We do not have much control, or say in the matter, when our bodies play up like this. So, don’t allow guilt to add to the stress of the situation.

And, your poor horse! Can’t you just explain it as a medical enigma, confounding the medical world?

It is good to keep active and you’re wise to listen to your body. Little and often is good, whilst practising moderation.


d1zzy
3 weeks ago

Hello @niteowl just wanted to say how I sympathise with your situation – it’s really rubbish to feel stuck in limbo, but I am in there with you! Not sure about advice, other than look after yourself and try not to worry about other people. My Dad used to take great delight in describing himself as a medical mystery but it’s not so funny when you’re the one living with all the uncertainty. I hope you get some progress soon.


sam10
3 weeks ago

@niteowl,
Everyday is a gift. Enjoy your days without MS, hopefully not but if diagnosed its better than lots of other diseases. Everything could be worse. If I were you I would be chang my life to a healthy life, exercise, healrhy food, smiling, stay away from stress. These are the best and only things that we can do, doesn’t matter we have MS, cancer or we are healthy.
We have to believe that we are so weak.


jolea
3 weeks ago

nightowl
Keep positive it can take a long time with some people to diagnose MS. Just be honest with your symptoms. Keep a record.
Keep fit it helps and eat healthly for energy.
LJl. 👧


niteowl
2 weeks ago

Thanks for the positive words I have gone back to work was a struggle to get through the shifts I have cut it to two days a week and I suffer the next couple of days for it but just have to get on with it.
Been keeping active hard when in pain most of the time, not really sure if the gabapentin is helping any more or pain worse 😬 still waiting on a date for lumbar puncture.
My son asked me the other day had I been drinking cos I staggered and stumbled 🙈 emmmm nope 👎 ……. still have weakness in my right leg it won’t lift 😥 Xx

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