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"No other significant symptoms"

Not for the first time, I’m hopping mad to read the write-up of my latest neuro consultation. I can only assume I think I’m being up-front and honest about how I’m affected, but it’s coming out as: “I’m fine!”

Apparently, apart from painful feet and slight urinary hesitancy, I have “no other significant symptoms”.

Apart from spending nearly half of every day asleep, being too weak to fight my way out of a wet paper bag, and feeling as if I’ve got flu’ ALL day, every day, would that be?

Also, apparently, I agreed to consider taking both amitriptyline and gabapentin. I thought my answer had been “no thank you”, but I must have been too polite about it, because apparently it has come out as: “OK, I’ll think about it”. I’ve thought about it - the answer’s still no.

So now my GP’s been asked for her cooperation in prescribing stuff I’ve expressed no interest in at all. I don’t think I have nerve pain to any significant extent (my pain is musculo-skeletal), so I don’t want to take a load of stuff for a problem I’ve not got. It’s bad enough I’m taking seven pills a day (not including supplements) for those problems I DO have.

It’s OK, my GP won’t go ahead and just foist them on me without checking first, but why should she have been approached at all, about prescribing things I’d said no to? I suppose the only advantage might be that if things change, and I do suddenly decide I want them, I might be able to bypass another trip to the hospital, and just ask my GP to prescribe, “as per my neuro’s suggestion”. She’s always very reticent to do anything without the hospital’s say-so, but if she’s had a letter from them, suggesting she prescribe, she can’t very well claim it’s beyond her remit, can she?

I feel extremely reluctant about amitriptyline in particular. Not because of the “stigma” of it being an anti-depressant - although it is. I know it’s prescribed in much lower doses for MS. BUT I’ve had an extremely negative and harrowing experience of ADs in the past - I’ve tried almost every type: SSRIs, SNRIs, tricyclics, and had distressing side-effects with all of them. To the point I’m now really negative about touching anything badged as an “anti-depressant”, even if it’s for completely unrelated reasons.

I know that if my neuro has a wrong idea about how I feel on a day-to-day basis, that can only really be due to me not making things clear. But I certainly don’t feel as if I have “no other significant symptoms”. I wake up every morning feeling as if I was run over by God-knows-what. I’ve just started a college course one afternoon a week, and was so exhausted last week, that after having dinner, I went to bed leaving the lights on all night, and the hotwater (was only supposed to be on for an hour, for a bath)! This week, I remembered the lights and boiler, but forgot my pills, so was up again 20 minutes later. Feeling this shattered, after just three hours at college, isn’t really “no significant symptoms”, is it? I wonder how bad things have to be, before they’re deemed to be having a “significant” effect on life?

I’m sorry to sound whiny - I always try to remember they do see many more serious cases, and perhaps that’s why his perspective on what is “significant” is rather different from mine.

I did think he was a “nice” neuro, so I had no problems in the consultation itself. It’s just that now I see the write-up, I think he has absolutely no idea how rough I feel most of the time. The whole thing reads as if nothing much the matter, and, albeit unintentionally, that must be the impression I give. I’ve always advised others - and followed it myself - to stick to the main points, and not detail every little symptom, because there won’t be time. But perhaps I really do need to go in with a list a yard long, to avoid being recorded as: “nothing significant the matter”.

Tina

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I am sure you have hit the nail on the head here!

It does seem to me, though, that one of the things we look for in our dealings with the medics is some kind of recognition of how things are for us - a kind of affirming ‘ping’ that reassures us that someone understands what is going on, even if he or she cannot do much about it. It sounds as though the the consultation felt OK in that regard. But consultation-speak and the brutal shorthand of doctor-to-doctor speak are two different things! That letter was not really meant for you - the consultation was meant for you.

I don’t bother getting copied in on these letters, and your experience has just reminded me why!

Try not to be cross. I am sure the letter was not meant in any way to discount your difficulties.

Alison

Thanks Alison, sensible as ever!

I always feel as if they’ve left out symptoms I do have, or, on occasion, invented a couple I don’t. It always comes as a bit of a shock when I read the summary, and think: “What? Was that my consultation?”

We’ve talked about this before, but I do suspect I’m doing a bit of the old, reflex: “Very well thank you”. I think I tend to be rather undemonstrative about how bad things are (though well aware they’re not that bad, compared to some people). I think only a doctor who’s known me a long time will know this. I don’t think even my own doctor knew, until I was finally diagnosed, and she realised nothing I’d been complaining about had been “nothing” - and in fact, she’d seen very little of me, considering I had something serious. But it’s taken years to get to that point, where she knows I won’t be fussing unless it’s “significant”.

I’ve had a different neuro the last three times, so none of them knows whether I exaggerate or understate. I think I’ve a tendency to the latter.

It used to drive me mad when my father would do it, but now I find I’m doing it myself. It’s not out of a conscious desire to play down the severity. I always think I’m being frank and open, but when I read the summary, it seems I haven’t conveyed the true extent of things.

Tina

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Hiya Tina

I had to have a look at your profile to see if you were in my area, as it sounds like we might have had the same neuro. We don’t, but it just goes to show that they must teach them not to listen or ask the right questions in neuro school!

My neuro keeps telling me that I need to go away and have a think about being depressed and speak to my GP. He thinks that my syptoms are because I’m depressed, not because of damage done by relapses. I’ve told him I’m not depressed and my GP (who knows me very well) agrees with me but he still says ‘just have a think about it’!

I have a very positive view on life, even with all the wobbles, fatigue, pain and cognitive probs and refuse to go away and convince myself that I must be depressed because my neuro says so.

Even my MS nurse just said, well it just goes to show how much he knows you, take no notice!

I think sometimes they think they have to have answers and pills to fix things that are just the way they are, they don’t seem to look at you as a person and judge how you would like to deal with things.

Sue

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Very interesting thread Tina/Alison. Before I was diagnosed with MS, I never had the need to contact the medical community, I thought they were there to sort you out when you became ill, no so with MS as everyone here knows. The way I play it is by putting myself at the centre, and using people as I need them. GP helped with early retirement, Neuro put me on a DMD, MS nurse helped me when I have needed steroids etc. Other than that, I research as much as I can and try to deal with my symptoms using exercise/alternative therapy/supplements& diet. I was given an EDSS score of 6 when I was diagnosed 4 years ago, it has never been mentioned since. I work on this to try to bring this down, this is my job, I think I am about 4.5 now… Just as well you are so switched on Tina, as it would have been easy to end up taking tablets that you dont need. When I was hospitalized a couple of years ago there was several other MSers in my ward, and I was surprised how many tablets they were taking, all I had was a stack of Trebor mints!. My best to you both. Peter.

Personally I don’t blame you for being cross as I feel that the medical profession can purposefully misinterpret what patients say sometimes. My recent hospital discharge notes were a complete work of fiction e.g. saying that the steroids worked when they didn’t and I had told them that time and time again. The ward doctors just kept telling me I looked well!

Hi Peter and Puddinglover (mmmm, pudding, yes!)

Yes, there does seem to be a tendency for things to be prescribed purely because “most people are on them” - so you get the feeling it’s what the book says, rather than judging your own individual symptoms. It’s always been my understanding amitriptyline and gabapentin are primarily for neuropathic pain, so if I’m not experiencing that - or not to a troubling degree, anyway (odd pins and needles), would I benefit?

I did at one time consider gabapentin, to see if it would ease the - then unaddressed - pain in the tops of my feet. But having contacted the hospital, first only to be offered “a cup of coffee”, and then an unwanted physio appointment (which I went to anyway, to show willing, but which didn’t help at all) I returned to my GP in desperation. She put me on quinine, which has seemed to help, so that removed the only reason I’d ever really considered gabapentin. I do still have the foot pain, but not as badly as before.

I don’t feel this particular consultant intentionally twisted anything - he seemed far too nice and mild-mannered for that, BUT I have had one - an opthalmologist - who did. Similar thing to you, PL: he claimed a treatment (not for MS) had worked, which I was adamant it hadn’t. But I felt he just wanted to prove himself right. So rather than admit he prescribed something that didn’t work, he wrote on my notes it had! Actually, the whole thing was appalling, in more ways than one. He was convinced my symptoms were caused by a rare presentation of an STD (I didn’t bother to protest I hadn’t had a relationship for years, because I didn’t know how long these things can lie dormant…) Anyway, he was so convinced I had the STD, he put me on antibiotics even before the lab results came back, and then pronounced they’d worked! Do I need to tell you the lab results came back negative, therefore there’s no way antibiotics could have worked against the infection I didn’t have!

Tina

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Wow that is sooooo wrong! (Re STD) I would have been livid!

I’ve had the same in letters one neuro who dismissed my symptoms as anxiety said that I admitted to being very worried about the symptoms! I didn’t he asked were they more worrying or disabling I said hard to answer as I clearly wasn’t disabled but nor was falling over so holding on to objects or people for support normal and I had come because of course they are concerning symptoms but that’s me saying I’m just basically anxious. There was loads not true or misconstrued I wanted to send it back with red ink corrections lol Axx

Funnily enough I also saw my nuero today who told me that the pain, fatigue, cognitive and speech problems I’ve been having we’re caused by anxiety about the diagnosis of MS from last year. When I told him I wasn’t anxious he said I must be subconsciously anxious, recommended Citalopram and referred me to a clinical psychologist! He seems only concerned with how well I can walk and reports ’ no significant changes’ even though I can no longer work due to numbness, pain, fatigue, mental ‘fog’, speech difficulties and incontinence. (If I am anxious it is about the increasing amount of drugs prescribed to me - Lyrica, Baclofen, Amitriptaline, Amantadine, Zopliclone, Avonex and now Citalopram.)

Just came across this post Anitra.

I think neuros have a slightly different deffinition of what constitutes ‘significant symptoms’ than do patients. My last neuro letter stated that I “continue to experience sensory issues but am not functionally incapacitated”. This is true, but I do sometimes think the implication is that if you are not “functionally incapacitated” , then symptoms are not viewed as ‘significant’. (Indeed, my las neuro actually said to me - “I would only be concerned if something dramatic happens, like incontinence”.

hmmm. I have (thankfully) just come out of a relapse, am feeling mostly very well now, better than I have for a while, almost no probs other than mild tingling in foot. But for 3 months my legs were very very very stiff indeed, with buzzing and tingling, and muscles twitching. my feet were extremely painful. I was so oversensitive to touch that I slept on the sofa to avoid pain & discomfort caused by my husband rolling over in bed / ruffling the sheets etc. I couldn’t wear a bra because of MS hug, and had episodes of really nasty dizzyness. HUGE impact on day-to-day life - had to change the type of clothes I usually wear, had to sleep apart from husband, daily experiences of fatigue and pain (especially the hug) and intensely uncomfortable parasthesias in legs and feet.

But yes - I can still hear, I can still see, I’m not incontinent, and I can still walk. So the neuro was right really - I’m not “functionally incapacitated”. And I do understand that some people with MS are functionally incapacitated, and that in comparison, I am mildly effected. BUT - that is not to say my symptoms weren’t significant! They were bloody awful! grrrrrrrr… it makes me so cross.

Just a thought. Specialists in some fields, for instance ENT, Gynae or Orthopaedics may at some time themselves have had experience of their fields. They might have had “women’s problems” or a broken leg at some time in their lives. Neurologists, on the other hand, have never had MS, and therefore cannot have the foggiest idea what it actually feels like in all its weird and wonderful (!) manifestations. Either someone has experienced, for instance, “the hug” or they haven’t, and neurologists haven’t, so who are they to say whether or not that is “significant”? Having read a few books on neurology may be helpful with MS theory, but the only people who understand MS symptoms are MS sufferers, and generally with a few years experience, we are much better placed than a neurologist to say what, in our own case, is a relapse and what is “just a few more symptoms”. When I had RRMS (and a neurologist) the only treatment I had was IV steroids two or three times a year, and only then when I was in a state of collapse and it was obvious I was ill. Any other symptoms were disregarded because they weren’t understood. It’s really no wonder neurologists seem unsympathetic when they have no idea what we’re going through. My MS symptoms were “all in my head” for over 20 years, but I had no way of convincing the doctors that something was wrong, and it’s true that if you can stand up, there can’t be much wrong with you in most people’s eyes.

Well, this was quite an old post, so I’m not fuming anymore - plus I’ve had a few distractions recently to take my mind off it (not in a good way!)

I really do try to count my blessings - I know I’ve been lucky so far, and that things could be so much worse, so I suppose we just have to accept that neuros really don’t mean to seem dismissive, when they say this or that symptom is “not serious” - or even neglect to mention it at all, as if it didn’t exist. I appreciate it’s all relative.

But it’s also a very valid point that whilst many things we go to the doctor’s about - injuries, infections etc. - may be something the doctor too will have experienced at some point, this is very unlikely to be true of MS. It doesn’t make me sceptical of doctors, as I accept there’s no other practical way of doing it: you couldn’t insist ALL would-be neurologists must have some kind of neurological problem, so they can understand what it’s like. Apart from anything else, that would leave us with an even more severe shortage of neurologists than we already have, and then some of them would get too ill to practice…

But I admit it’s sometimes strange to think you’re being treated by someone who can have no concept of what it’s like - other than from textbooks, or from your own accounts as a patient. That’s why I sometimes worry it’s me not being clear or emphatic enough about what I experience, as he doesn’t have a lot else to go on, does he?

Of course, I don’t realistically want my report to read: “Patient came to me in a dreadful state…has deteriorated markedly since last time.”

I suppose, as Alison mentioned, way back in this thread, we’re just seeking a bit of recognition sometimes that our problems are not “nothing” - even if we walked in under our own steam.

Tina

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Hi Tina,

Your neurologist sounds just like mine, yet my ms is affecting me as badly as it is you. Are they cloned or is it a halloween trick theyve inhereted of pretending to be interested in us?

If our caregivers arent interested then what hope eh.

Sending you some (((((((((((((((((((((hugs))))))))))))))))))))

bren

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I have been having various health issues for a few years. Beginning with gait issues, hip misalignment, urinary infections and inability to empty my bladder, sciatica, pins and needles, cold water feelings down legs and face, thyroid problems, high blood pressure, fatigue, speech and language issues, swallowing problems, spasms and sleeping problems. I recently had an MRI. The first was of the whole spine and it showed up lesions on 2 discs behind the neck, 2 in the middle of my back and sacroiliac joint joints.

My neurology appointment finally came and he scheduled speech and language and a brain MRI. It has come back to my go as unremarkable.

Ive waited for 1 year for this appointment and it went badly. My go told me to write down a timeline of all the symptoms. He was instantly dismissive and I retreated into myself and didn’t get to tell him any of them!

I used to be a busy working mum of six and it seems like a lifetime ago! I had my speech and language appointment and quite strangely a nurse noticed I was lost and called to me that was if I followed her she would take me to the MS nurse.

Its not the first time someone has said that but I now am terrified that I’ve bungled my neuro appointment and I might never get another!

Can anyone give me some advice!

coincidentally, someone I know has been through the same ordeal but her neurologist wasn’t bored or dismissive and she already has been given her follow up appointment! I feel like I keep getting drs who just aren’t interested!

My kids need me, my husband needs me and I feel like I’m hitting my head off a. Brick wall!

First of all, let me say that you’ve joined onto a very old thread that’s not very relevant to your post. You might be better off starting a new thread.

But, by the sounds of it, you didn’t bungle your neurology appointment, what you’ve said about the results from you latest MRI implies that there are no brain lesions. And it seems that the neurologist doesn’t think you have MS.

You can ask your GP to check into whether you can have another neurological appointment, or phone the neurologists secretary to ask the same question. But if the neurologist has discharged you because you don’t have any neurological symptoms (as far as s/he is concerned) or any positive tests showing any neurological disease, then you might find you can’t get another NHS appointment.

Some people end up seeing a private neurologist for an initial appointment, preferably one with an NHS practice as well as private. If that neurologist thinks there are grounds for further tests, you could be referred back to the NHS.

Some of your symptoms don’t sound like they are neurological in origin, eg thyroid problems. So it’s possible that by bundling up all of your various health issues you perhaps seem to be throwing too many symptoms at the doctors, so they become confused as to what might be neurological and what is not. So you might need to do what you’ve been advised, write a clear timeline with symptoms, and include what has been resolved or what is still bothering you.

I wish you the best of luck.

Sue