Last reply 1 month ago
Neurologist appointment questions

I saw my neuro Thurs at relapse clinic after leg pain not easing despite gabapentin. He said my MRI scan back in may that led to DX was a terrible mess with multiple lesions glowing. He was surprised I was only presenting with one symptom at the time. Since then I’ve developed burning feet, bladder retention and my mobility has gone from 100% to maybe 10% in that short time. He gave me a prescription for steroids, took blood and urine samples and is booking me in for a Lumbar puncture in around 5 weeks. He also gave me info on DMD to start straight away after he gets LP results. Said it should show any lesions on spinal cord. Head was spinning. If there are lesions on the spine and these steroids have no effect, does that mean my mobility is unlikely to improve much? He told me to keep on the gabapentin, said it could have been working and I could be in real pain if I wasn’t taking it any more.

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stumbler
1 month ago

@hartleybear , wow, that’s a quick deterioration, with all of those additional symptoms since Thursday!

It does sound like relapse activity, so a course of Steroids is the usual medical response. These will dampen down the inflammation on your Central Nervous Symptom (CNS), causing the relapse. This should then allow you to recover some or all of the lost function, although this may take several weeks.

A Disease Modifying Therapy (DMT) would seem to be an obvious next step, given the severity of this relapse. You might find this tool useful in your deliberations :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The Gabapentin is the usual medical response to neuropathy. The following article describes the types of pain we can experience. You can then determine whether Gabapentin seems to be the right choice.


hartleybear
1 month ago

@stumbler sorry I typed it wrong, I’ve had all these new symptoms appear one after another since July. I was walking around a festival August 31st and when I got home I put my feet up. When I stood up, my legs hurt like crazy, since then I can’t walk more than 20 meters, need my kids to support me walking into a clinic to check in. 6 weeks for mobility to reduce 90%


dominics
1 month ago

Dear @hartleybear,

Caveat: – I ain’t no Doctor!

It should be worthwhile asking the Neurologist – in a non-stroppy way – why they have decided not to start you on a DMT immediately? This may winkle out more infgormation.

You are perfectly entitled to ask for a second opinion. Sheffield is probhably you closest centre of excellence for MS treatment. You may want to get on the radar of people with a very focused interest in MS.

The well-known centres are Edinburgh, Sheffield, Cardiff (I think), Oxford, Cambridge and London (Barts etc).

I was moved from gabapentin (that wiped me out) to Duloxetine, which has worked v well for me.

The Barts blog is v. informative. multiple-sclerosis-research.blogspot.com

When you are newly diagnosed the word ‘why’ is very powerful! Ask questions. No such thing as a daft one. Why stick with gabapentin, what are my alternatives, I’ve heard of X (duloxetine in this case) and what is your opinion of it, what has the experience of others been regarding X, etc.

Best of luck.

Dom

PS: Nothing stops my burning feet sensation. I am forever insisting they are on fire, whilst Mrs S declares they are cold to the touch and accuses me of just angling for a footrub.

PPS Weblink corrected to make it “clickable” – Admin (Stumbler) 😉


hartleybear
1 month ago

My neuro wants to do LP cos he said there’s a slim possibility that it could not be MS, could be a more rare issue that wouldn’t have been tested for although it’s extremely unlikely. I’m happy to wait for the outcome of that. He’s offered me tysabil, lemtrada, ocrivus and mavenclad. Kinda ruling out the pills, they’re not as strong and the ocrivus is a new one that he couldn’t really tell me about. Any advice anyone can give?


vixen
1 month ago

Hello @hartleybear, oh those burning feet, I get that too. Ocrevus in the newest DMT to be approved in the U.K. Is it the first time you’ve had symptoms this year? You’ve had a rough time and hopefully soon you will be recovering and on a DMT in order to prevent another attack this severe. You need to be really kind to yourself at the moment and accept all the help you can get. All the best, rest and eat well and try not to expose yourself to any more stress, as stress is our arch enemy x


hartleybear
1 month ago

Ain’t that the truth. Sick of ms already, it’s changed things so dramatically and quickly, hardly time to catch a breath.

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