Forum

Asking too much?

I’m feeling a bit lost and emotional at the moment. I was diagnosed with MS (don’t even know what type!) in May 2015, and was told by the neurologist that I’ve probably had it for 40 years and that it’s very mild and unlikely to get any worse. Good news! He didn’t want to see me again, didn’t give me any information and discharged me to the care of my GP.

My GP has done her best for me, but obviously doesn’t have specialist knowledge of MS. I have left-sided weakness and balance problems, and can’t walk very far without a stick. I’ve also got intense itching at random all over my body, which is disturbing my sleep. I’ve just started on Amitryptaline 10 mg to try to control the itching. She’s also referring me to a neuro physiotherapist.

I’ve been reading the forums with interest and have gathered a good deal of information. It seems to me that I’m on my own and have to take control of my condition for myself, but I’m in need of some support. Any wise words for me?

Hi Landgirl welcome, you are not alone there are many very helpful people on here. Have you contacted the MS society for information and help there should e a group the meets near you there you will be able to get locally based advice and some support which you should be getting. Have you been put in touch with a MS nurse, at least your GP is trying to get you the help you need.

There are some very helpful and caring people on this forum who I have no doubt will be able to give you some useful information as well as some much needed support. Sue

Hi Landgirl,

This is really a tough one!

No, I don’t think you’re “asking too much”, and, as a diagnosed person, could insist on regular, routine neuro appointments.

However, on the other hand, I’m not sure how much you’d get out of them.

I’m coming up to the five-year anniversary of my diagnosis. I was diagnosed in my mid-forties, but feel I’ve had MS much longer.

Not as long as 40 years, perhaps, although sometimes it occurs to me not all was well in childhood, so who knows? Sometimes I think ten years, sometimes 20, sometimes that I’ve never been right…

A good GP can deal with most day-to-day management of MS, especially if they are willing and able to prescribe symptom relief, and to refer as appropriate to specialist disciplines like neuro-physio. You don’t technically need a consultant’s say-so for any of these things, so if your GP is good and proactive, you might find trotting up to the hospital once or twice a year for your regular chat about how it’s all going is a bit of a waste of time - yours and theirs - if things are relatively stable, and have been for some time.

Certainly, that has been my experience so far. My present neuro is a very kind and interesting man (the previous one was also nice, but rather on the brusque side). We usually have a jolly interesting chat, before deciding to do…NOTHING!

As I am bordering on phobic about the hospital - not helped by the fact I don’t drive, and get myself in a right royal state about whether the bus will get me there in time (which it hasn’t always), these chats have tended to be rather counter-productive - causing only the anxiety of a hospital visit, without a corresponding benefit!

So it really depends what you’re like as a person. Some people like a lot of face-to-face contact with their consultant, just to make sure they’re not missing out on anything, even if it rarely or never leads to anything that would have been outside the remit of a GP. Others (like me!) feel that the fewer medical appointments you can get away with, the better, and seek to avoid an overly “medicalised” life.

So it really depends on (a) you, and (b) how you rate your GP, whether you are happy to leave things as they are, or want to press for more time with the consultant (even if the latter is mostly for reassurance, and won’t necessarily lead to anything new).

Of course, if there was a sudden, dramatic change in your health, or anything the GP simply couldn’t answer, I’m sure you wouldn’t be denied access to a consultant, whether or not you were already on the books for “routine review”. My appointments are down to annual now, because I get so stressed about them, and because I’ve been pretty stable since diagnosis. But always on the understanding that I could get in touch sooner, if I was worried about anything, and wouldn’t have to wait the whole year round!

Mostly, nothing happens (touch wood), so I’ve never felt the need to call them. I do think, as time has gone on, there has been some quite subtle deterioration, and very occasionally something that might or might not have been a relapse (if it’s so slight you’re not sure, it’s not a very bad one). But so far, nothing I’ve felt to be an emergency, so I’ve been content to leave things as they are. My next scheduled hospital visit is March, and I’m hoping there won’t be anything before then. :wink:

Tina

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Thank you both for your kind words. Stellabean, I haven’t found a group yet, but I’ll investigate. Anitra, I don’t have a problem with hospitals as I spent most of my working life in one, and I do kind of feel that I would like some kind of regular contact with an expert. I guess I’ll have lots more questions for this forum as well!

Hello Landgirl. How are yer ? My thinking is similar to Tinas, she just puts it so much better… What area do you live ? Someone on here may be in the same area…? Take care of yourself, Andy