Last reply 2 weeks ago
New symptoms not a relapse?

Hi again
So I’ve just met with my neuro – was told this was to start treatment however it was not the case!
He explained they the new symptoms of neuropathic leg pain with tingling/numbness in March this year he does not think is a relapse at all but is being caused due to an old lesion on my spinal cord from 2019.
He explained that as lesions heal they form scar tissue which can lead to new symptoms.
I’ve never been told this before & i cant find anything online about it. I’m so confused as I was always told any new,sudden symptoms that are persistent was a relapse. This was confirmed by 2 nurses however now it’s not the case at all!
Has anyone else experienced new symptoms from old lesions? 10 months between lesion & new symptoms
Many thanks

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vixen
1 month ago

Hi @caole-ann_scott, I can somewhat sympathise. I have experienced worsening, and also new sensations (still in the same area) and have repeatedly been told the same. In fact, I am at the stage now where I don’t bother to report new things/or ask for advice, as the conversations are circular. The way I see it is to keep taking the meds, and rely on the fact that the overall outcome won’t change just because I report it. Does that make sense?


carole-ann_scott
1 month ago

@vixen
I’m sorry to hear this.
The leg pain/tingling is completely new as my legs were not affected at all last year so not in the same area for me. I didn’t experience any pain at all last relapse.

I’m not on any meds at all for ms yet as they need to see proof that it’s active. I was told in March that the leg pain was a ‘mild’ relapse & did not warrant any treatment or a soon MRI however now that’s all changed. Now being told not a relapse but sending me for an urgent MRI to see any new activity!
I’m baffled & completely disheartened by the whole thing too. X


stumbler
1 month ago

@carole-ann_scott , I hope the MRI has been requested “with contrast”. This would emphasise and active lesions.


carole-ann_scott
1 month ago

@stumbler
That’s what I had last tine so I would assume so.
🤷‍♀️


bernadette
1 month ago

@carole-ann_scott, if you have a diagnosis of MS then you need to be on treatment (if you want a disease modifying drug that is) surely then the question about a relapse or not is beside the point. Why doesn’t he want to treat your MS?
AND, clearly its a relapse from what you describe.
Is your neurologist even a MS specialist ? Doesn’t sound like it, sounds like he was talking a load of tosh; or maybe he was having a bad day. I’d take a deep breathe and go back via one of the nurses and state that you want you disease treated.
…just my opinion

good luck


carole-ann_scott
1 month ago

@bernadette

You have hit exactly the opinion I’ve had since diagnosis in May 2019!
The neuro has said that before starting treatment then he needs to see that the MS is active.
From my medical history he thinks I had first attack in 2005 & then nothing until 2019 so it might be benign in which case doesn’t require treatment.
I have argued that not all relapses have symptoms & the 16 (approx) lesions in my brain & spine would suggest more than 2 attacks but he disagrees with this.
I don’t understand why this new symptom is not a relapse but he said new symptoms can start from old lesions.
I am to get an ‘urgent’ MRI scan to confirm if this is a new attack or not. He said to me within the next few weeks – nurses phoned to say it was requested for 4-6 weeks.
To be honest I’m so frustrated & p*ssed off with the whole thing.


bernadette
1 month ago

@carole-ann_scott it sounds like your neurologist is a dinosaur within MS neurology, or as mine describes them ‘one of the laggards’ and he’s only referring to the ones that prescribe outdated drugs…as for the ones not treating MS ! He is outraged by that.
As for the ‘benign’ word used with MS, that is now highly contested and many argue, meaningless.
Of course you feel as you do. Its your body and you know what has changed. I’d be fizzing.
Perhaps there is another neurologist in your treating hospital who is more up to date and one of the nurses/your GP could get your care transferred to them (that what I did after a few months of frustration).
Your profile doesn’t include where you live, if you have another MS specialist centre near you I would ask your GP for a referral there. I ended up doing that because I knew I needed a different more active approach. It can take time unfortunately but not as long as
It takes to wait for these out-of-daters to get to retirement.
Keep on persisting, and good luck.


novemberrain
1 month ago

@carole-ann_scott I find myself in a similar situation to you right now. New numb/tingling sensations in both feet for a month or two without pain. On Saturday I experienced things that belie my 20+ yrs of “benign” MS, falling over, blurred vision, brain fog (?hot weather). I dont take a DMT. When I speak to my neuro in a few weeks I’ll see what his opinion is and let you know.


carole-ann_scott
1 month ago

@bernadette
Thank you for replying!
My neuro assures me he is very aggressive when treatment is required lol.
I will see what the MRI shows & have the conversation again requesting treatment & if I still get the same answer I will request a second opinion.
Unfortunately he is the only neuro in my area so I would need to go to Glasgow for a different neuro but I’m willing to do this if he still refuses to start treatment.
Not sure how I request a 2nd opinion But will look into it.
Does your neuro treat symptoms?
I’m now on 1800mg Gabapentin a day but pain is still breaking through. Neuro wasn’t concerned when I told him & he didn’t offer any advice or other treatment options for this – don’t know if this is normal or not.


carole-ann_scott
1 month ago

@novemberrain
Thank you for replying – please do let me know how you get on x


mlgilber1
1 month ago

I’ve had two pseudo flares in the past year and both times I had a worsening of symptoms and new symptoms. Both times they did MRIs with and without contrast and I didn’t have any new or active lesions.


bernadette
1 month ago

@carole-ann_scott ‘when treatment is required’ and when does he think that is for what is a progressive disease?! Crikey. What would he do for a family member?

Mostly my GP helps with my symptoms if possible. The neurologist’s main advice was concerning pain relief. I had been on Amitriptyline 10-20mg at night for a while (Gabapentin did nothing at all to help) As I was in a relapse & in pain when I first saw Prof. He advised me to ask my GP change to Pregabalin. The MS nurse advised me that many of the patients are on 400mg plus doses twice daily. My GP started me on the lowest dose 150mg OMG. It knocked me out so much that I only took a single dose. Not for me. She also advised me that its a drug that can cause dependency which is important to consider.
I remain on Amitriptyline 20mg, it takes the edge off but doesn’t rid me of pain but I can feel that the disease is still active which reminds me to carry on self-care measures e.g. exercise, diet, meditation. If I was to take a higher dose I know it would knock me out. I sleep enough as it is.

On the MS Trust website there is a lot of good information about Treatment Decisions, as well as other matters. I have found it is vital to swot up on the facts so as not to go to appointments as a passive recipiant to Drs however senior or important they think they are 😉


novemberrain
2 weeks ago

@carole-ann_scott
Hi, I finally spoke to my neuro. He thinks it’s a pseudo exacerbation brought on by UK heatwave and UTI. I’m holding on till next summer for routine MRI (even if I had a new lesion I’d be hesitant to start DMT with my MS history). How are you?

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