Letter following neuro visit

Everyday living
1

I’ve just received a copy of the letter to my GP following my routine neuro appointment last week.

I suppose there’s nothing absolutely, fundamentally WRONG about it, but once again, they seem to have disregarded symptoms I do have, but introduced others I don’t - but which they think somebody with MS would. I do get cramp, but I don’t think I’ve ever complained of spasms, if that’s any different. The letter now says I have both cramp AND spasms.

I’m shocked to realise there’s absolutely nothing in the whole letter about PAIN. It seems I’m not on record as having any pain, although we did discuss this. They are only interested if it’s neuropathic pain - which I’m pretty sure mine isn’t - it’s musculoskeletal. I saw a different neuro this time, and had actually thought her a bit less dismissive of this, yet it appears nowhere in the letter.

I realise it’s partly my fault, because I cannot have explained well enough - or at all - but reading the letter, you would think I am not having any problems to speak of - particularly not pain - and no problems are mentioned above the waist at all, even though I do get back and pectoral cramps, upper (as well as lower) body weakness, and we actually talked about my stiff arm!

I’m not claiming benefits at the moment, but it’s not surprising people find it so difficult, when consultants’ reports omit a glaring feature, like: “This patient suffers chronic pain”.

They seem more interested in my anxiety, which has been there since childhood, is a family trait, and I’m positive has nothing at all to do with my MS!

I’m already on prescription medication for the pain, so I’m not actively seeking anything different - but even if it’s being managed, shouldn’t it at least be mentioned?

And there is a small reference to intermittent abnormalities with my colour vision - which I did report, but they have got the details wrong. They said it’s only when I’m reading certain colour fonts, on the computer. Hardly a problem, as you don’t have to read coloured fonts that often! In fact, it is happening with BLACK fonts, that I am sometimes seeing them “in colour”. So not quite such an obscure or occasional problem as the letter suggests, given that most fonts are black!

I’m not a very demonstrative person, so sometimes think that because I don’t exhibit theatrical levels of pain and anguish during the appointment, it gets written down as “everything is fine”. I’m not being ungrateful: I DO know they see people a whole lot worse than me, and I’ve got to read the comments in that context. But I’m a bit miffed that nowhere is it even mentioned I have any pain. :frowning:

Tina

2

how annoying for you.

why don’t you type up a list of symptoms and how they affect you?

give it to your neuro at the start of your consultation (say it’s because you forget things)

so when he sends your notes to his secretary he will have an aid memoir

carole x

3

Hi Carole,

I will have to, next time, I think. But next time is nine months away! I admit I didn’t really do any preparation for the appointment. Because I live with things every day, I tend to think they already know about them, but because I only see them once or twice a year, they probably don’t!

However, if I type them all up for next time, I just know it will be interpreted as how much worse my MS has got, when I don’t think that’s the case (or hopefully won’t be, by next year), but just stuff that’s always been there, but which they don’t seem to have ever picked up on.

T.

x

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Hi Tina, that is so annoying, I sometimes think the neuros and nurses just interpret what they expect to see and if it differs from their expectations then they can’t seem to cope with it, as you say, no wonders people struggle to claim benefits. I think pain is a significant problem for you Tina and that should really mean that it should be written down, even if they are unsure exactly what is causing it. I guess it would be like my neuro not mentioning my balance problems. Actually reading your text again, it is actually worse than I originally thought, they have got the thing about your colour vision totally wrong too, thing like that should really be noted correctly, imagine you were to go along next time and your vision was different again but you couldn’t quite remember how it was previously, if it was correct in your notes you would know exactly how it had been. But the thing I really wanted to comment on was your cramps and spasms. I think there is a difference between the two. I am the exact opposite of you. I complain of spasms all the time but I don’t get cramp. Cheryl:-)

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Hi Tina, oh how blummin irritating for you! The report does make out that you are in better nick than you actually are.

Each time I go to a neuro appointment, I give them a typed list of current meds and symptoms. They always seem to welcome it and put it in my notes. i`ve seen the old ones are still there, so they are acknowledged.

I think neuros` notes are particulalry important should we need them to back up DWP benefit claims. Not something which is currently a concern for you…but you never know eh?

What are you going to do about the situation, if anything?

luv Pollx

6

Dear Tina,

I too suffer with chronic pain and over the last year it has been primarily upper body, some of this was definitely neuropathic pain which was helped significantly with gabapentin but the musculoskeletal pain seems to be bypassed whenever I mention it. I get pain in my legs and in my shoulders. arms, feet and hands. I too get cramp and as far as I’m aware not spasms.

On the one occasion I took a list to my neurologist his response was “that’s a very long list” and he didn’t even ask to look at it. I felt really embarrassed but I had put down everything because I thought it would be helpful. Now I don’t bother and in fact a new symptom that has bothered me considerably over recent weeks, I mentioned and then dismissed myself when I last saw him again because I felt embarrassed. I realise that this is my problem and I am lucky that my MS nurse is someone who will listen and advise on any or all symptoms, aches pains emotions etc. Thank goodness.

I think if I were in your situation I would be writing a letter to point out the errors that have been made so that the records can be altered.

I wish you well

T

7

Hi Tina

It is quite common for letters from Neurology dept. to omit/add symptoms. It can be very annoying and i know some of my friends have complained about it.

One friend who has very bad pain in her hips from years of struggling with MS was very angy with her MS nurse who stated that “pain is not a problem for this patient” and has asked to see an older more experienced nurse.

Personally, I do find that my letters are a little ‘up beat,’ this I’ve decided is where Neurologist or nurse is trying to give a more postive report than is accurate, so as not to cause me to become depressed. Perhaps I am being naive but if I am really upset about accuracy I do contact the office and let them know I am not happy.

Wendy x

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It does seem that neurologists omit symptoms, or do not record symptoms accurately. Doctors/nurses/medical personnel/ancillary staff admittedly appear to be overworked but that does not excuse shoddy documentation, especially since a medical record is a legal document.

Makes me wonder if this is one of the reasons there are so many in limbo and fighting for a diagnosis.

S.

9

Thanks, All.

Cheryl: in response to your points, specifically, I really felt she was “fishing” for symptoms she thought I should have, at times. I have few classic neuro symptoms (except when having a relapse, of course). It’s nearly all musculo-skeletal (I assume my weakness and abnormal muscle tone must be putting a strain on other things).

But when I told her I was having numbness and pins-and-needles in my hands - mainly at night - she kept prompting: “Yes, and what else?” as if that really couldn’t be it, and there must be something I wasn’t saying. Almost as if she wanted me to say: “Oh yes, I do get L’Hermittes”, or something, as that would much better fit the textbook.

I’m not actually that bothered about the pins and needles, as I rate them more of a slight annoyance than a pain, and have simply learnt to live with it. Yet they go in the letter!

But the much more serious pain that I live with every day doesn’t get a look-in, because: “it’s not directly caused by MS”.

Well, directly, indirectly? Who cares? It’s still pain, and I have to live with it. I’m sure it’s related to MS, because the only other choices are that I’m mentally ill, and imagining it, or have some other serious debilitating condition, which has so far defied diagnosis. The latter seems unlikely, as I’ve had full Rheumatology screening…twice. And been tested for more than 100 other things en route to an MS diagnosis, too. None of those turned up a thing - except for the MS, of course.

On the principle that the simplest explanation is probably the best, isn’t it more likely that my problems ARE caused by MS, which we know I have, than by some mystery illness that’s invisible to all tests?

Honestly, I thought once I was diagnosed, all the aches and pains I’d been living with for years were explained, and would be recognised and accepted as part of it. But sometimes I feel as if I’m still in limbo, as my main symptoms are being brushed off as: “That’s not really to do with it”.

It’s not my fault that my secondary symptoms - at the moment - are more of an issue than the primary ones. I don’t know why it’s that way, but it is. I don’t think it should be dismissed quite so lightly.

Tina

x

10

Even though Ive been suffering various symtoms of ms since diagnosis (and perhaps pre diagnosis), Ive felt my neuro has ignored most of my symptoms even though Ive voiced them and given her a symptom list, which she refused.

Im tempted to say, they are either not much interested in ms as they see people with other neurological conditions which may be more interesting, or they dont have time to listen to all our symptoms, never mind sympathising with us when we experience some new ones.

My neuro is more interested in my stomach acid problems than ms related issues. Ive found my gp is more interested and listens, hence further testing.

Its frustrating but we are after all numbers rather than people suffering ms. Seems nothing has changed much over the years.

take care,

bren

x

11

Hi Bren,

My GP is not especially knowledgeable about MS - however, that does have some advantages, as she doesn’t see everything about it in such black and white terms.

When I tell her I have pain I believe is related, she’s much more likely to say: “Probably - pain’s a complex thing!”, than to give me a curt: “That has nothing to do with it!”

On the plus side, I’m not going without pain relief (which is prescribed by my doctor, not my neuro), but I’m just a little frustrated that it isn’t being acknowledged as part of the same thing. Apparently, neuros find it easier to accept I have pain all the time from NOTHING, than that it has anything to do with the MS. I’m left wondering whether I should be pressing for an alternative/additional diagnosis, to explain the pain. But enough people on these forums seem to experience similar pains for me to think it’s not just coincidence.

I suppose, as long as it’s being treated by someone, the neuros can think whatever they like about the origins - and that it’s not MS, if they want.

It’s just frustrating that the so-called experts don’t acknowledge a common type of pain.

Still, not so long ago, it wasn’t accepted MS caused pain at all, so I suppose we’re getting there by inches. But to me, it’s not a great leap of imagination to think that if someone has stiff muscles all the time (spasticity), and maybe impaired gait, they might get some musculo-skeletal problems. What’s complicated or surprising about that?

Sorry, rant over!

I’m particularly niggly this week, because I had such a bad cramp the other day, I actually got a muscle strain. Blatantly non-neuropathic pain - I know exactly how it happened, and when. Doesn’t mean I’m not limping though. :frowning:

T.

x

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Ditto !!! I saw neuro two weeks ago , received the copy of her letter to gp , wasn’t my gp at the practice!! Omitted like you to mention my chronic pain, misinterpreted things I said . To top it all put my ms down as secondary progressive but failed to say that she officially diagnosed me as this !! Could have taken quite a big paragraph out as I dont know who it was about. So seems it happens to more than me!!! M X

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my neuro seems to dismiss most of what im telling him too and i KNOW mine has progressed even though he took no notice. im just glad i found this post as i now dont feel so alone. I cant walk far without considerable pain and heavyness in legs and back, but he tells me im static in my condition and im not, then i get a letter by post saying im now secondary progressive. what a way to telll me!!!