Update on hospital appointment

Everyday living
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Well, I was in a right state before the appointment - anxiety totally out of control.

I was in the loo at least four times (No. 2s), even though I’ve been off my food. Sorry, I know this is too much info, but it doesn’t seem to make any difference to how much comes out.

I was shaky in the consultation, so that he now thinks I have tremor, which I don’t, except when very anxious.

On the positive side, he was very pleased with my physical examination overall.

But he seemed genuinely gutted about the threatened redundancy, and how stressed I am with that. Sat there with his head in his hands, and said he doesn’t know what to suggest. He said there is no test he can give me which would PROVE my work performance is impaired, and that they’ve therefore been acting in a discriminatory way. He said he’d only be able to prove cognitive issues if they were quite pronounced (which they’re not).

He did think it was quite understandable that I’ve been distracted and NOT devoting my full attention to the job, given my relatively recent diagnosis. He didn’t think it was surprising at all that I’d not been volunteering for “new challenges” or training courses - which seems to have gone against me. But although he thought it was all quite obvious to anyone with commonsense, it’s not something he can medically prove.

He was very worried about how stressed I am - more worried than about the MS, I think - and was trying to nudge me in the direction of anti-depressants - AGAIN.

Well, I think I must have tried every one going, before being diagnosed - the trendy new ones, AND the old faithfuls. None of them helped at all, and the trendy new ones made me feel dreadful. I swore never again.

He wants me to cut down baclofen, which he thinks is causing the fatigue. I don’t think it is, because I’ve NEVER felt weak or drowsy with it. I am on a lot (60mg), but now I’m anxious about cutting that down, because I know I get the spasticity and cramps straight back!

Oh, and I’ve been told yet again that my aches and pains are unconnected with MS.

Well, this is ridiculous! They are my worst symptom, by far, but I’m repeatedly told they’ve got nothing to do with MS. I’ve had full rheumatology screening…twice - which failed to find anything else the matter with me, so why have I got pain all the time from NOTHING, if it isn’t the MS? Who does deal with musculo-skeletal pain, if the neurologist says it’s unconnected, but Rheumatology say they can’t find anything? It seems crazy to me that even now we know I’m ill, and what with, my symptoms are being dismissed as unrelated.

I’ve not really come home any happier. It’s good that the physical examination was encouraging, but I’ve got nowhere re the pain, no suggestions at all on the work front, and am being steered in the direction of ADs.

Tina

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Hi Tina, all this together with work problems is bound to make you twitchy!

Have you asked about a referral to the pain clinic? I know this exists but have never been myself.

Musculo/ske;letal? Now i was referred there a while ago, but they couldn`t help at all. But maybe they could help you. They are an offshoot of the physio deot here…see if you can find them at your end, eh?

Don`t accept anti depressants as they are not what you need, from what you say.

luv Pollx

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Hi Tina,

are you any benozdiazepins at all such as diazepam, they can cause the shakes, i was on them for a few years and after a while they caused me real bad problems, i had become dependant on them without realising and the shakes, were my body withdrawing from the drug, i only took 2 a day,but your body soon wants more, and that was the reason for the shakes,my body was telling me it wanted more,i felt so well after i had come off them,but it took me ages.

as for the neuro saying pain isnt part of MS !!! dont know what planet they are on some of these neuros.

jaki xx

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Thanks Poll,

I’m already sure ADs are not the way forward. I had terrible side-effects from them before, which, when I complained, were dismissed as being part of the symptoms they were supposed to treat. Funny then, that they cleared up as soon the tablets were stopped, and haven’t happened since! So I’m really quite hostile to the idea of trying again. I regret ever having taken them at all, as they definitely made me feel worse, and were a s*d to quit, too.

I just feel frustrated that such a big part of the problem (pain!) is being dismissed as “unrelated”. I’m sure, in my own mind, it must be part of the MS, because if it was anything else, why couldn’t Rheumatology or Orthopaedics (bones) find anything? I almost feel as if he’s saying the pain is psychiatric, and that’s why he’s nudging me towards AD’s.

But I’ve been saying my feet and joints hurt for years - well before my MS diagnosis. But MS is still the only thing that’s ever been found.

Tina

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Hi Jaki,

I do take diazepam, but only in very modest doses, and they ease my shakes, not cause them.

I am not normally shaky at all, and positive I only was today because I got myself in such a state. I was locked in the bathroom throwing up, ahead of my appointment, so of course I got there quite jittery!

I’m realising, as I write this, that he will record the trembling as being MS-related, even when I’m quite positive it was anxiety.

Meanwhile, the pain, which I’m sure is NOT psychological, he will write down as having nothing to do with MS!

What can you do? I’m getting “normal” (for me) anxiety symptoms recorded as MS, but the real symptoms I struggle with daily are nothing to do with it, supposedly!

Tina

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Hi Tina, sorry you are going through this awful time and they can offer no relief! It seems they get these set ideas about pain and MS and nothing changes them. They used to think that MS didn’t cause pain at all. Now they think that everyone with MS gets pain but it is always nerve pain. However if you had ME dx it would be normal to have muscle and joint pain!

The other thing I think about nerve pain is that surely all pain is nerve pain in a way, as without the nerves we wouldn’t feel the pain. Does that make sense? If central nervous system controls everything and is messed up with MS, then surely it can cause pain in the muscles and joints. It’s so confusing.

Maybe you have ME as well as MS (I’ve heard of people being dx with both)… but personally I agree with you that MS is causing the pain, it’s just the neuro’s get sort of stuck around what can be and what can’t be caused by MS.

I might be wrong, but I don’t think him urging you to take AD’s means that he doesn’t believe you… more likely just doesn’t know what else to do. It’s sort of last resort prescription when they don’t know what to prescribe. But I think Poll’s suggestion of referal to pain clinic is a very good one. Could you see GP and ask for referal?

I really hope things sort themselves out soon Tina and this awful insecurity around your job gets resolved quickly.

Thinking of you,

Pat x

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Thanks Pat,

I’m 90% certain the musculo-skeletal stuff is all to do with my very high muscle-tone, and subtly altered gait and balance, which must put a strain on things, long term. But I don’t know why this is seen as so implausible that a neuro would dismiss it.

I don’t really get neuropathic pain, to any great extent. I do get buzzing - particularly during relapses - and pins and needles, and occasional electrical-type zaps. But most of these are in the category of “weirdness”, or “annoyance”, rather than anything I’d seek treatment for.

But the real, remorseless, there every day, grind you down type stuff, isn’t neuropathic. So I think you’re right: if it’s not obviously neuropathic, neurologists seem to think there’s no connection. There’s no recognition that having tight muscles and altered gait every day would eventually lead to other types of pain.

Surely, if your muscle tone is all wrong, it’s bound to lead to pain eventually?

Tina

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Hi Tina Sorry you had an unhelpful appointment with your neuro. As Pat says the pain you get probably is MS related. These neuros don’t know everything! I hope you get some joy with work - they don’t seem to be very understanding. I am also resisting going down the AD route, as they don’t always seem to help and I feel I’m on enough meds anyway! Hope things improve very soon. Thinking of you, Teresa xx

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Hi Tina, I totally understand your anxiety prior to your appointment , mainly because I used to get the same way,I still do, although now I see an appointment with the nurse as more of a nuisance than anything else, nonetheless I still get very anxious beforehand. That is good news that he was pleased overall with your physical examination, as to the tremors, yes, it sounds to me, and I am not medically qualified, thatthis was related to your anxiety, I know that my walking gets a lot worse when I am anxious, ok it is always very poor nowadays anyway, but in the past I was always so anxious about seeing neuro that I could not show him my walking at its best because I was in such a state about seeing him and of course, in th early days when I walked better than I do now, he was always left with the impression that I was worse than I was. Strange too that he seems to think your pain is unconnected, especially since you have been tested twice by rheumatology. I really think he should be listening to you about the pain, I think sometimes once people like that get an idea into their head they can’t work around it. I think you think your pain is ms related but I wonder if you would like to be tested for anything else, if there are doubts in your own mind that it is ms. Tina, I think you said you didn’t have an ms nurse, do you think you should see if there is one you can see, just an idea that they might be happier to listen and suggest other things. I’m sorry too that this thing with your job has dragged on and it must be very stressful for you, it’s a shame the neuro couldn’t pinpoint anything that might have indicated discrimination. Do you think it is worth challenging the company over this, especially if there is nothing to lose. Really feel for you today. Cheryl:-)

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I’m sorry you were feeling so shaky, Tina, and clearly your neuro is concerned for you and feels rather helpless! At least you had a sympathetic listener on the work front - pity he did not have more to offer in the area where you might have expected more - the pain management. I have heard people on here mention neuro-physiotherapists. I dont’ know much about them, but wonder whether a physio who has some specialist interest in neuro problems might be worth consulting? Other than that, might there be any mileage in a pain management clinic? I do think that pain management, for all its huge importance for quality of life, does not get nearly as much medical attention as it should. Evidently so, in your case! It must be wretched for you.

I hope today is a calmer and nicer day.

Alison

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