help!!! gp says ms not seen specialist yet though

New diagnosis and before diagnosis
1

hi all

ive had the mri ct scan doppler on my neck lumbar puncture etc

it was thought i had a stroke in august, but after all the tests the stroke specialist referred me to ms specialist who im waiting to see now

i had a phone call from the hospital to say my lumbar puncture results were positive and ive been referred to a bigger hospital who specialise in ms

ive seen my gp every 2 weeks for pain meds and asked him to look over all the reports to which he says yes it is ms although he said that before the lumbar puncture,im due to see the neuro in the next few weeks

my symptoms have been;

total loss of left side, which came back after around 8 weeks

shaking/twitching/muscle spasms

feels like bugs crawling in my feet

my body just aches im in constant pain with my leg and back

im tired all the time like wiped out tired even if not done anything

i feel weak

the headaches come and go

i have no concentration…i gave up my car in the end

my balance has been really bad (my leg gave way outside the school and i accidentally tripped a little boy over who smacked his face onto the floor)

i get dizzy

and to top it off my memory isnt the best either i have to leave notes everywhere or ill forget!!1

i thought id had a dx but now im just not sure of anything

the scans showed up lesions on my brain and my gp says they are more than likely in my spine which is causing all the pain,but if they havent looked how can he know?

i just dont know if im coming or going now i know it hasnt been going on for long (august 2011)but i just want to know from my file can my gp really dx me?

i would appreciate any responses

thanks all xxxx

2

Hi there…sorry to hear you are having a tough time of it. I think your gp is merely interpreting the results he/she has infront of her…but it would be good to get a confirmation from the neuro when you see them. I am no expert here but if the LP results are positive then that is pretty conclusive am affraid…:frowning: it would be good to perhaps ask the neuro for a spine MRI also or discuss the benefits of having one done…in terms of getting a better idea via an MRi and see if there are any other lesions? You can see your gp notes if you request at the surgery. Hang in there eh…and continue to see your gp as you have and maybe keep a diary of all your symptons for when you go to see the neuro consultant.

Emma

3

Hi Kel,

I am really sorry that the gp gave you that news. I just wanted to let you know that my gp sat my husband and I down and told us I had ms.

He referred me to a neurologist who asked me how I was, had no notes, no history and barely looked at me and said you do not have ms while banging his fist on the table. I got upset and then my husband intervened to be told by the doctor to “shut up”.

When the mri that my gp had ordered was presented to him he then sent me a letter telling me he had referred me to an ms specialist!! All that happened 8 months ago and I am still in limbo. My gp is terrific and is treating me as an ms patient and has been nothing but supportive, so please treat yours well as a good gp is worth their weight in gold.

I wish you all the luck in the world,

Chis

4

[quote=

He referred me to a neurologist who asked me how I was, had no notes, no history and barely looked at me and said you do not have ms while banging his fist on the table. I got upset and then my husband intervened to be told by the doctor to “shut up”.

When the mri that my gp had ordered was presented to him he then sent me a letter telling me he had referred me to an ms specialist!!

I wish you all the luck in the world,

Chis

[/quote]

Good grief!!! Are these ‘people’ even human? Where the hell do they get off talking to patients like that?, who pay their blooming salaries, lets face it! I’d never actually wish anything really nasty on anyone, but, boy, lets hope he gets his sometime soon!

5

I was his last patient before he retired, all I can say is thank God he has retired as the worry he has caused has been terrible, we left him thinking only option left was a brain tumour!

Anyway my point was really to say don’t give up, I’m sorry your going through such a hard time but eventually someone listens!! x

6

Sorry Kel, to answer your question, no a gp cannot dx you, it has to come from a neurologist.

7

Hi Kel,

A GP is NOT qualified to diagnose MS. It has to be a neurologist, and even then, not all neurologists (I don’t think). It has to be an MS specialist.

I guess your GP is only trying to be honest, and keep you in the picture, because it does seem, from all the evidence, that MS is the most likely.

However, an MS diagnosis is notoriously difficult, and there are a few rare conditions that can present similarly, so the final say really has to go to a neuro.

I don’t think your doc was “wrong” to try to prepare you, but technically, the diagnosis cannot come from a GP, even if they’re very good, and their assessment is correct. A GP is a generalist (hence the name), but MS is a specialist diagnosis.

I’m afraid you will have to wait for positive confirmation from the consultant, but at least you’ll have some idea what to expect. You won’t be going in assuming it’s nothing.

Obviously, in the unlikely event he does turn round and say the tests are NOT indicative of MS, you’ll need to query why your doc thought it might have been. But better to cross that bridge if/when you come to it.

Tina

x

8

Hi Kel

MS can only be diagnosed by a neurologist (in the UK at least), but your GP can certainly tell you what he thinks is going on - it’s just not official.

A positive LP and lesions on your brain very strongly suggests MS. It’s possible to have a false positive LP (about 5%) so if your lesions aren’t in the right places for MS, a specialist may take things a bit slower before making any decisions and may do some more tests (e.g. a spinal MRI). If the lesions are in the right places, then it is almost a certainty that you will be told “probable MS” or MS when you see the specialist. Sorry :frowning:

Medics can tell where lesions are likely to be because of our symptoms and because of signs (which are the responses we make to clinical tests, e.g. reflex tests). This is because some symptoms/signs can only happen if there is damage to a particular place. So, for example, some of my symptoms can only happen because of spinal lesions. Even though they weren’t visible on the MRI I had at the time, we know I have them - it’s the only way the symptoms could be happening. So you don’t really need a spinal MRI - the neuro will be able to tell that you have spinal lesion if you still have those spinal symptoms when you see him/her.

I hope the appointment goes really well. Try and remember that a diagnosis is actually good news. Your body is going to keep doing whatever it’s doing regardless of what it’s called, but the sooner you know, the sooner you can get the help you need.

Let us know how it goes!

Karen x

9

Yes good luck too… Anitra and karen have some really good points so hope that helps…its good though that your Gp is trying to keep you in the loop, its shows they care about their pateints and perhaps he empathises with you through this long process you are going through…and in some small way giving you some definates regarding the tests so far.but as said above…hopefully you will get sme confirmations from the neuro dr…and as Karen says a disgnosis is positve but its good that you are moving forward anyway…stay positive

Em