Neurologists

Everyday living
1

I do really like my neuro but sometimes I get the feeling that she hasn’t a clue what it’s like to have ms. I take amongst other things , pregabalin for neuropathic pain. I take 450 mg a day but it leaves me very confused and disoriented and when I think back to my initial symptoms, I feel worse now. My neuro replied with Ms doesn’t hurt!

my confusion can get to the point of not being able to tell the time, organise myself, find words or talk coherently. I had a school meeting last night and I really couldn’t cope. I had my daughter with me. She does all the talking for me but I feel so stupid and that I’ll be an embarrassment to her. I’m normally in bed at 8 and to get to her school is a mile walk to the bus station, then a long bus ride then a mile and a half walk to the school from there. I was in tears. It was just too much and I fe like I’m letting her down. I still work. But anything out of my routine or interferes with my bedtime I go into meltdown.

i take amantadine to help with fatigue but I think it helps me focus but doesn’t make me less tired.

i asked my neuro for any other medications that could help. ( I tried gabapetine and another one I can’t remember the name of which is used for depression but they made me become a zombie)

i was told there is nothing else.

Any advice or ideas

thanks

lynn

2

Hi Lynn

If a neurologist says that MS doesn’t cause pain you should find another one if you can. It’s absolute cr*p!! There are all kinds of MS pain, from tingling to burning, spasms, cramps, optic neuritis, etc etc. It’s a very old fashioned idea that there’s no pain with MS. There are so many types of pain, and many drugs besides pregabaline and gabapentin. Amitriptyline may be what you’ve also tried, it does help with the burning type of pain but timing is key, you need to take it at least a couple of hours before bed, otherwise you can feel like a zombie the next day. It kind of depends on the kind of pain you have as to what will help. But if your neurologist just doesn’t believe in your pain, then how on earth can he /she prescribe anything useful??

It sounds like you also have some cognitive trouble too, maybe you should try for an appointment with a Neuro psychologist? They might be able to help with some ways of improving your confusion, or at least make you feel more confident. But then it sounds like your parents evening nightmare was at least partly caused by fatigue.

Do you you have an MS nurse? S/he could help with suggesting drugs for pain and a referral to psychology? And/or a referral to a different neurologist, one who believes in pain!!! Otherwise, are there general neurology nurses who could be helpful?

Sue

3

Who is prescribing the pregabalin for neuropathic pain, if MS “doesn’t hurt”?

Is your neuro prescribing, despite not believing pain is an issue? If so, that makes absolutely no sense. Why would she prescribe pain relief for pain she does not accept occurs?

Or is it simply the case that your GP prescribed it, and your neuro has gone along with it, rather than risk outright confrontation with your doctor?

Otherwise, I simply can’t understand why she is rubber-stamping pain relief for a pain she doesn’t acknowledge exists!

I think I would definitely have had words if a doctor had told me to my face that MS doesn’t hurt. Not that I’m suggesting that’s the right way to go about things, but I wouldn’t have been able to contain myself.

I haven’t done a scientific survey, but I get the impression the vast majority here are on pain relief of some kind.

Why, if MS doesn’t hurt? Are we just a bunch of whingers, and the Medical Profession prescribes pain relief to humour us? Unlikely!

I don’t understand the comment at all.

I do understand there may be little or nothing left to try. Unfortunately, despite the oft-repeated mantra that nobody need live in pain these days, ultimately, not all pain is fixable - or at least, not without side effects that, in their way, are as troublesome as the pain.

I get permanent pain from my MS, but it’s nearly all cramp/muscular, and hardly any of it neuropathic.

Hence I take NO neuropathic painkillers (tried gabapentin once, just in case, and it made me quite giggly and silly, but otherwise did nothing). I take conventional painkillers (lots) and muscle relaxants (Baclofen and Diazepam). Oh, and quinine for cramps.

I wonder if you’ve ever tried “ordinary” painkillers, just in case your pain isn’t neuropathic? Not all MS pain is.

In general, although my neurologists (two main ones so far) have been good, I have found them quite weak on pain. I would say it is my single biggest symptom (either that or fatigue, it’s hard to choose), but neither has ever appeared in my notes, even though I’m sure I mention them every time.

If I ever need to make a benefits claim, I’ll have an uphill struggle, because there’s nothing on record to suggest I’ve ever had pain or fatigue - indeed, nothing to suggest I’m not doing fantastically!

Because my pain is not textbook neurological pain, it’s often dismissed as: “Well, that wouldn’t be MS!”

I find it simply inconceivable that I have all this pain, yet it has nothing to do with the only serious thing I’ve ever been diagnosed with! Does that mean I have something unrelated that is causing it all? I don’t think so, as I was tested for pretty much everything in the course of my MS diagnosis anyway, and everything else was clean as a whistle. So in my opinion, it’s pretty unlikely I have some mystery, pain-causing condition, that’s unrelated to my MS.

It used to be a very widely held belief that MS was painless, and there are almost certainly a few elderly neuros still practising who were taught that at medical school, and have never quite managed to “unlearn” it.

But is your neuro elderly? If she qualified in relatively recent times, there seems no excuse for believing MS to be painless.

Tina

4

Hi,

I get really angry when I read that some neuros don’t believe that pain isn’t a part of MS. I’d ask the MSS for help, or the MS trust. Surely even the most closed-minded neuro would take note after reading a letter from a major charity?

I really hope you either find a proper neuro who knows about MS or help from the MSS. It’s outrageous that such dreadful neurologists are permitted to practice.

Best wishes and hopes,

K

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5

As plenty of the other posters have said, your neurologist simply doesn’t know what she is talking about if she says that MS doesn’t hurt.

You can get referred to a different neurologist, for a second opinion, as long as your GP is willing. When I asked mine to do this, he had to check with the practise manager whether it was OK, but it was.

You could post on here asking for recommendations for neurologists who are not too far away from you. If you get the right one, you might be able to get a prescription for modafinil from them. This is the drug that students take to help them study - it has a big effect on brain function. It is generally only prescribed for excessive sleepiness in people with MS, but I have heard (once) of it being prescribed to help with brain fog.

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I’ve just been told by my rehab specialist neuro (I’m very lucky in that I actually have two neurologists!) that Modafinil won’t help with cognitive problems and he doesn’t feel the risks outweigh the benefits. This is in spite of my having taken it before with no problems. He’s someone I totally trust with regard to drugs for symptom relief, so in spite of my having believed previously, on the anecdotal evidence of what people have sometimes said on here, that it might help with cognition, I have to believe that he’s right. I’m now waiting for a referral to a neuro-psychologist for my memory and cognitive problems.

Sue

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Here’s the article I read about Modafinil

​and here’s a relevant quote from the author that wrote the article

"After more than two years of being made sluggish and clumsy by MS, my mind muddied and muted, I was wide awake. In the stuffy, darkened house of my head, all the windows and doors seemed to have been flung open and the air was crisp and cool.

The euphoric effect faded after a month or so (no more cleaning frenzies), but the wakefulness remains both robust and reliable. I take 400mg just about every day (with no side-effects) and I’m twice as productive and considerably happier. I’m not smarter, but I have the hours I need, and loads of them."

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