diagnoses

[hollies22]

HI

 

Not yet been diagnosed properly, had 1st brain MRIon nov 15ththen thay called me back on fri 9th dec for another brain MRI, Has anyone here been diagnosed with only MRI scan ?.

[norma]

Hi Hollies Yes I was diagnosed after one scan. My Doc suspected MS so referred me to a Neuro. Once I saw him he arranged for a scan and it was that quick. I was very lucky. I really do feel sorry for people that have to trail back and fore to Docs and Neurologists or even worse don't get to see them to try to find out what is wrong.

 

Once I saw my Neuro after the scan and he told me it was MS and I had 3 lesions on my brain. I was put straight on to Copaxone. That was almost 2 years ago and thankfully I have been fine. I hope you get answers soon Hollie. Best of luck with everything. Norma

[Marina]

I was DX'd by MRI only. But then I refused to have a lumbar puncture . I also had a VER, but it showed no Optic Neuritis (thank goodness) so that didn't go towards any DX.

 

My 1st MRI (brain) 2 yrs ago showed 3 small lesions, but I was told it was inconclusive... It was only when I had a 2nd MRI (this June) that they found changes in my brain MRI, and that was what cinched the DX. I also had a full spinal MRI and they found some additional lesions there.

 

Normally, when they want to do a scan again, it's usually at least 6 months later, as it can take time for any changes to show. It might be that they're calling you in for another scan so soon in order to do one with the dye, as these scans can see newer lesions better apparently (or some such thing). Sounds like they have good reason to call you in for another MRI this soon.

 

Anyway, good luck with the scan on Thursday, and let us know how you do with it

[Michelle]

Good Luck with your scan Hollies...

Like Marina said they usually put dye into your veins on second scans to help define things. Does not hurt but thats cold comfort to you having had your second scan a few days ago.

How did the scan go?

 

Love M

[hollies22]

HI MISH

WENT FOR 2ND SCAN, THEY DECIDED TO HAVE A LOOK FOR 5 MINS THEN SAID THE DOCTOR WOULD LOOK AT THE SCAN WHILE I WAS THERE,THEN SHE CAME AND GOT ME OUT AND SAID THEY DONT NEED TO DO THE DYE .I AM VERY CONFUSED DOES IT MEAN THEY FOUND NOTHING.

 

LOVE HOLLIES22

[Marina]

Hi Hollies

 

I've no idea why they didn't do the dye, but it does not mean they didn't find anything. Maybe it means they found something and so it wasn't necessary to do the dye. But don't take my word for it.

 

They do seem to be a bit distant, to say the least, with you. Did they not tell you when you might get the result? Do you know how long you will have to wait for that?

[hollies22]

HI MARINA

Rang neros sec today and she said about 2 weeks for scan results, absolutely sick of waiting, I was only in scanner for about 15 mins alltogether the 2nd time, if it was clear would they tell me there and then.

 

love Hollies

[Michelle]

Hi Hollies,

 

They dont usually tell you anything about what they see on the scans. Well not there and then. About two weeks is the norm for results. I know when i went for my second scan I was told in advance that they were putting a dye into my veins and they did tell me what they were looking at a specific section of my spine etc. Infact the staff at the MRI unit were more helpful than my surgeons.

It is awful having to wait and not knowing what is wrong with you. It really is a waiting game for want of a better expression.

((((((((((((((((((((((hug))))))))))))))))))))))))))) not that it helps much. I know sounding off here helps me a great deal.

Let us know whats what if you hear anything.

 

Love M

[nikia43]

Hi ,

 

I was diagnosed from just one MRI nearly 3 years ago now. I haven't had another since. I didn't have any dye either.

 

When I was diagnosed no-one really knew what was wrong and I think everyone thought that I had been experiencing one of those things that just disappears. MS, etc was never ever mentioned. So you can imagine my surprise and horror on being told that I had MS. To be honest I really cannot remember if they mentioned anything about lesions etc.

 

 

I really hope that you get some answers soon and put your mind at rest one way or the other. Although it is horrible to have the label MS it is a relief to know that you are not imagining the whole thing!!!!

 

Good Luck

[Marina]

I was only in scanner for about 15 mins alltogether the 2nd time

If I remember correctly, the MRI of my brain was only about 15 mins too. It was over an hour though when I had my whole spine and brain MRI'd this year.

 

Both my MRI's were private, the first one in France, the 2nd one in UK. In France, one waits 20 mins and they give you the MRI and typed results straight to you for you to take to your doc. You can imagine my shock when I read "lesions of demyelinisation" in the report... as I instantly knew what it could mean, given the symptoms etc that I'd had and my whole history... (which my GP in France also agreed it was what I thought, especially given my history). I just shook on the spot and cried. The UK MRI of this year took about a week (or it might have been 2), as it meant seeing the consultant again and that was when he was available and he'd also sent it to other neuros to check over.

 

The 2 weeks wait will seem like an eternity... I know. It'll soon be there though. Keep your strength and moral up, and try to keep yourself busy during this wait, it can sometimes help to make time pass quicker

 

Good luck!

[IRISHCOLEEN]

i got dx with just the MRI, whats the dye? i never got that!! Just got in the "tunnel" for about what seems like an hour and listened to music. Then went away as they told me the results need to be reported and correlated b4 results are confirmed. I thought id fine out there and then (id paid for the MRI privately, but apparently it takes a couple of days to read the results of the MRI) Neuro foned me 2 days later with the dreaded news! well he said he was 100% it was MS from the MRI, but to confirm fully he wanted me to have the LP. (the less i say about that experience the better) really wish id refused it now!!!!

 

Just a note of interest, does anyone else whose had a lumbar puncture experince any problems from it? My back kills me more than usual (although unsure if this is just MS, and not the result of a botched LP!!)

 

Rachael

[hollies22]

HI

rang neros sec yesterday she said the results are now back from ist MRI i sked if they were clear and she said she could not sayWhy are they reporting on 1st scan when i only had 2nd one last fri. She said it was a lenghy report what dose that mean they found somethging or not.

 

 

Hollies 22

[Michelle]

Hi Rachael,

 

My partner is not at all happy with me and my decision about L.P. I have read that you can have a awful headache for days from it etc. I just dont like the idea full stop and have told my partner and surgeon that there is no way i am having it.

I am also told that it can be inconclusive in a dx so my arguement is why have it?

But then i am a big baby when it comes to things like needles.

Was it very uncomfortable having the lp?

 

Love Michelle

[Wnella]

Was it very uncomfortable having the lp?

 

I assume " lp" you mean lumber puncture

 

I feel uneasy telling you this but, mine was VERY painful BUT I dont want to put you off if it means proper dx. Some things in life NEED doing .

 

Remember mine was done by a doc who seemed unexperienced as the kept hitting the actual nerve(s) & had to get another from casualty dept !

The pain was a matter of secs & others have had it done with NO PAIN. :shrug:

[hollies22]

HI

NEROS SEC SAID THEY WOULD PHONE ME TODAY , HE DIDNT SO I RANG HER AND SHE SAID HE HAS NOT HAD TIME TO LOOK AT RESULTS YET AS HE HAD DOUBLE CLINIC, MAYBE THEY FOUND NOTHING SO THERE NOT IN ANY HURRY TO TELL ME.

STILL IN LIMBOLAND.

 

HOLLIES.

[ddgorgeous]

Rachael/Michelle,

 

I had an LP almost 5 years ago and it was almost painless. There was a local anaethsetic in my lower back and then a nurse did it. I think it was technically harder than usual and they only got a drip at a time of spinal fluid, but it was very painless.

 

I had been warned prior to having the LP, that severe headaches were a common problem if one did not lie very still for several hours after the LP, heavy meals were avoided and lots of water was not consumed.

 

I did what I was told and there were absolutely no side effects of any form.

 

I had an MRI and VEP the following day and was led to believe it was a combination of these things that would lead to a dx. Any one of these tests would not indicate MS on it's own.

 

Take care and best wishes,

 

Ron

[Michelle]

HI Hollies,

 

Poor you.. all this waiting makes one anxious.

 

But you are in my thoughts

 

Michelle

[hollies22]

HI MISH

1ST MRI NORMAL SECRETARY SAID NERO IS WAITING FOR 2ND SCAN I CANT SEE THAT SHOWING ANYTHING COS IT WAS ONLY 3 WEEKS LATER.

STILL IN LIMBOLAND

 

LOVE HOLLIES

[Hils]

Oh Hollies, this is a nightmare for you.

 

I too was diagnosed after just one MRI. Though I'm sure the neuro was quite sure what it was after I had my initial consultation with her before that. It was one hell of a shock after I had been led to believe by my gp that I had a trapped nerve. (Perhaps he was just trying not to frighten me though?).

 

It took a year from the start of my leg problems to diagnosis. Is a ridiculously lengthy process and I do feel for you. Hopefully you'll know something soon. Good luck.

 

Hils

 

[hollies22]

HI HILS,

Were you diagnosed by just a brain mri im fed up with this making me feel suicidal. have a lovely christmas.

 

HOLLIE X

[Michelle]

Hollies,

 

I am still waiting for a dx.. even though my first mri showed a lesion. Two of my local g.p's have stated that they think I have ms and are concerned for me. However, they have to be sure and rule out other things. For me it's now about keeping myself as healthy as possible and trying to stop myself from being depressed. Although that is impossible some days.

I agree with you that it's like being in limbo but one of the main things is to keep yourself sane through this uncertain time.

Make sure you write down questions etc when you see your doctors and try and keep a record of whats going on within your body. It might help with a dx, it might not. But i find it helps to write things down and passes the sometimes long days.

Hope some of what we have all said helps you in some way.

[Hils]

Hi Hollies,

 

I had a brain and spinal MRI together. It showed up several lesions in my brian and one(?) at the top of my spine. This must have been definite enough for the neuro I suppose as I wasn't offered any other tests (I didn't know there were any other anyway).

 

Limboland is the worst place to be but I hope you can enjoy Christmas despite everything.

 

Thinking of you.

 

Hils

[Michelle]

Hi Hollies

 

Hope you have had an enjoyable christmas despite all the waiting around. I was thinking about you and wondering if you had your results from the scan?

 

Love Michelle

[hollies22]

HI MICHELLE

Still waiting for results of 2nd MRI brain scan.

I will let you no what happens.

 

HAPPY NEW YEAR

 

Love Hollies.

[Michelle]

Still waiting? It must seem like an eternity for you.

Thinking of you.

 

Michelle