Looking for advice :)

New diagnosis and before diagnosis
1

Hi I’m looking for a bit of advice, I’m not very good with spellings so bear with me pls :slight_smile:

im 32 now, my grandmother was told she had ms at 17 and my mother was told at 32, I’ve had symptoms of Ms for a lots of years now, had 2 Mri scans over the years which told the doctors nothing at all and I keep being fobbed off by my gp… every night I have spaziums in my legs which cause my whole jolt…

I’ve suffered depression for a lot of years aswell so they put it down to my depression :frowning: I’ve got problems with my bladder and my left eye has become weak. I just to be able to speak to my grandmother and mother about this but since my symptoms have worsened my grand mother passed and my mother can’t comutucate anymore. Has any1 been fobbed off the way I have?

I feel like I have nobody to speak to or ask advice as I do get fobbed by my gp. Is there anything that can be done apart from an Mri as that shows nothing… I’ve seen a big big change in my ballance and mobility. I get really bad pains in my back somedays and it’s impossible to walk very far without having to sit down… My doctors just puts it all down to depression :frowning:

2

Hi Vic, it seems to me that you should go back to your GP & ask for a referral to see a Neurologist. Your GP should be made aware of your family history.

Sometimes doctors can’t see beyond the depression, so if you’re feeling let down by yours maybe you could see somebody else? You might have to be quite firm about what you want done, try not to be fobbed off. It might be a good idea to write your symptoms down so that you have everything clear in your mind…

Good luck

Rosina x

2 Likes
3

Thanks Rosina for your reply… I have recently changed my gp but the new surgery hasn’t had my notes sent across yet :frowning: I’m just wondering if there’s any other way other then an Mri as I’ve had 2 of them in th last 6 years my last 1 was 3 years ago but I was told it was all normal, when I know myown body and the changes happening… The doctors make me think I’m losing my mind or it’s just in my head :frowning:

4

Hi Vic,

There is no single test that can prove OR disprove anyone has MS. MRI is just one piece of the jigsaw. However, I have to say, it’s a very important piece, and very unlikely (but not impossible) that anyone could get an MS diagnosis if no abnormality at all has ever been found on MRI.

Even if your symptom history all points to MS, repeated clear MRIs cast doubt on whether that could possibly be the case, so it would be a brave - or possibly reckless - neurologist who would feel comfortable diagnosing. There’s no absolute rule they couldn’t; it would just be very, very rare.

MS is a tricky diagnosis, but does not stay invisible forever. You could push for another MRI, in the hope (hope is probably the wrong word) that something will have materialised by now. However, the longer you have symptoms, but the longer the MRI stays clear, the less likely those symptoms are caused by MS. You don’t have MS for years and years with no change at all on MRI - if a third one was still clear, it would point to another cause. In fact, every clear MRI you have makes MS a little bit less likely. It’s not impossible for the damage to be invisible in the early stages - it just doesn’t stay that way.

Tina

5

hi vic

if, as tina says, it is unlikely that you will be diagnosed with ms, there is still something very wrong.

so ask the neuro what it is if it isn’t ms.

so annoying when you KNOW that something is going badly wrong with your body but no one believes you.

my husband really upset me by saying that i was wishing ms on myself.

i just remember my aunt having ms years ago and sort of recognised it in myself.

good luck

carole x

6

Hi ladies just a quick update… Woke up Monday with no vision at all in my left eye went to my gp and he sent me to have my eyes checked :frowning: wasn’t good I was sent straight to the royal LIVERPOOL hospital :frowning: a few hours ago I had a lumber puncher since I arrived at the hospital there’s no reflexes in my left side :frowning: so hopefully I will be told something tomorrow.

thanks for listening to me girls :slight_smile:

7

I was listening to a very interesting radio programme on the iplayer the other night, all about the “nocebo” effect. The nocebo effect is sort of the opposite of the placebo effect, in the sense that negative expectations (e.g. that a drug won’t work, or will have unpleasant side-effects) tend to be a bit of a self-fulfilling prophecy.

Not that I’m suggesting Vic’s suspicion (or anybody’s) that they might have MS makes it more likely to be true.

It’s just that part of the programme dealt with how important not just content, but style of the consultant’s communication is.

For example, the consultant, meaning to be reassuring, says: “Well, we couldn’t find anything wrong with you!” But what the patient hears is: “We don’t believe you!”

Of course, that’s not what the consultant meant at all - he thinks it’s great to be able to reassure the patient they couldn’t find anything sinister. But because they’re at cross-purposes, the patient takes away: “They didn’t believe me”, or: “They think I’m mad!”

I thought to myself: “How many times have we seen that little scenario played out on these forums?”

Unless they have said so more directly, it’s very unlikely the consultant who says: “We couldn’t find anything wrong!” means: “We think you’re making it all up!” From their perspective, they’re breaking GOOD news. They don’t enjoy telling patients: “Well, the results are back, and unfortunately we found something of concern.”

Not particularly to you or Vic, Carole - but just one worth bearing in mind, I thought.

“Nothing found” doesn’t mean: “Not believed.” It just means exactly what it says - nothing found.

Tina

1 Like