Wee bit of a panic

New diagnosis and before diagnosis
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9 weeks into the neurology wait, &, for the first time ever (including last time round) I’ve had a slight panic. I’ve had plenty of frustration and wanted to scream, but I’ve never doubted the optimism I normally have.

In the void left by being on a waiting list, I’ve started researching symptoms properly. BIG MISTAKE!!

I’m now scared senseless about the pain in my legs. I mentioned this in a previous post, and it is still with me, with the Gabapentin not touching it.

I read some articles this morning & came across the fact that there is no cure for allodynia it’s caused by peripheral neuropathy. I can’t find any information about ms. I don’t know what sort of damage I have, but it was my assumption that at some point it would magically disappear. Previously my symptoms have come and gone, but I’ve never had this one before.

Can allodynia disappear if you have it as part of a relapse? I’m wondering if I need to shift the focus of my optimism to successful pain management, rather than this symptom getting better on its own.

Ta
Paula

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Before my diagnosis (while i had barely any loss of sensation) i went through several weeks of past-my-pain-threshold pain whenever something came in contact with my feet, when i finally got to talk to the neurologist about it he said it was a common response but one helpful to mention (i was by then losing feeling more seriously in my legs) i can’t speak to the general case, but they DID tell me that happened as part of an attack most likely, and these days i have less feeling in my feet than i would like, but not the same contact pain that i had before.
It’s also not been a common feature of my attacks, just that early one.

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I don’t even have a biology O level, so take this with a pinch of salt but, as far as I understand it, MS is a disorder of the central nervous system, not the peripheral nervous system. So (again, as far as I understand it, which isn’t far) the pains and itches and sensitivities caused by MS have their origin in the CNS. I have had RRMS for a long time and these things have waxed and waned again in line with various relapses over the years. Most have got much better with time as the relapse has healed, although none has ever gone away completely. I don’t know whether any of this is technically right or, even if it is, whether it helps. It’s just my experience.

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Hi Mali

Dr Google has an awful lot to answer for!

Successful pain management would be a good thing to aim for - once you have a handle on the pain, you should be able to get some of that optimism back.

I am on Gabapentin and for me (all of 5’3" and, at the time, 120 lbs) it took 2,400 mg a day to ease the initial pain (my GP had rugby players who only needed 600mg a day!); that has now been reduced to 1,800 mg a day. Unfortunately, you have to ease yourself up to that sort of dose. My prescription actually reads “upto 2,700 mg a day” but at 2,700 mg I become a bit of a space cadet so stuck to the 2,400 mg a day, for a few months then gradually dropped it back down to see if the pain had lessened, which it had.

I am also on 10mg of Amitriptyline at night (I used to be on 20mg but cut that back too), which helps massively with the pain - I know that none of us want to be taking this much medication, but sometimes you just have to, to get yourself to a point where you can get on with life. It eventually does become part of the everyday ritual - wake up, take 1st dose of meds, brush teeth, sort out hair; lunch next dose; last dose, brush teeth, bed.

My allodynia has never gone away, but I have gotten used to it, I think that’s the best description, with the right medication and dosage, it almost becomes background noise, you know its there but you don’t really pay much attention to it.

If you don’t already use mindfulness meditation; or have been told about, directed to this; I can say it is definitely worth trying as a means to help where allodynia in particular is concerned. It’s worth giving it a try.

MS is an extremely variable condition, everyone’s experience is different.

Relapsing Remitting MS (the most common type) tends to come and go, a symptom starts and then either goes away completely, or stays, but at a lesser level - Optic Neuritis for example can show up dramatically with a loss of vision and gradually over a period of time resolve with either full or partial vision returning, the same goes for most of the things that MS throws at us.

I understand the frustration of being in limbo, was there myself until not so long ago. Don’t doubt yourself for one second Mali, but I would say, take anything Dr Google tells you about MS with a hefty pinch of salt, Dr G tends to linger on the worst aspects of MS, and yes, MS can be pretty horrible, but MS can also be an irritating sibling, not that bad, but bloody annoying at times.

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Thank you all. I’m back to my positive self again today.

So, if I have peripheral neuropathy, I’m probably stuck with this pain, and if I have something central, like ms, then I may well also be stuck with it.

Thank you for the info, @TheresaB. I’m 5’3’ too, although I’m a lot wider than you thanks to the comfort eating I’ve been doing since Christmas! I’ve worked my way up to 600mg gabapentin at night and 300mg during the day, so maybe the gabapentin will work eventually.

I used to use mindfulness, when I couldn’t cope with work stress, so I think I’ll try that out.

I also like the idea of pain becoming background noise. I have tinnitus, which is really loud these days. I’ve had it since my early 20’s, and it’s always there, but I can ignore it, and have no problems sleeping with it because I’ve found ways of shifting my focus from it. Maybe I can do that with this, at least in the short term.

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I had forgotten that you’re still in limbo land - sorry. Today’s ‘good’ news remains that if it’s RRMS that is causing your pain, the effects of this current relapse should get a good deal better with luck and time.

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Don’t worry.

Bit more good news today. The patient booking team have replied to my email about appointments, & the way no one I speak to is able to tell me how long I’ll have to wait (in breach of the patient charter).

Drum roll…. All clinics are fully booked up to May, but there’s a chance I’ll have an appointment in the next block.

Not so bad, I guess, but then I’ll join the waiting lists for mri etc, which took another 3 months last time. Our poor, under-funded and under-staffed NHS. It’s so sad. I’ve no idea what the waiting times are like for non-urgent referrals.

Just hope they dig a little deeper this time, if the mri is clear.

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