GP shown me all letters from Consultant and guess what he said?

New diagnosis and before diagnosis
1

Today I went to see GP about the results from last MRI.

He started by saying that the most recent letter was literally 3 lines which said that they had found one new lesion (in head) when compared with the first scan in January 2011 and the spine scan was unremarkable.

He then went on to show the history - going backwards, the letter before said that symptoms were consistant with Multiple Sclerosis so sending me for more scans (results above).

The letter before stated the results of my LP which said there were ono’watsit’ bands (don’t know the full word lol) which the GP said was caused by protein in spinal fluid, but blood test was normal, also that field vision tests showed I had an enlarged blind spot.

The letter before that a stated that my first MRI and VEP tests showed signs of demyelation but wanted to send me for LP to be sure.

So he concluded that very useful appointment with that it would seem from those results that I have MS and wished me luck for my appointment with Neuro on 22nd.

I just feel rather numb - kinda was expecting it but thought it might not be actually true and my symptoms were either in my head or caused by something simpler, but the fact that my second MRI shows progression albeit it by only lesion makes it seem more serious in my eyes

I am assuming that this is not an official diagnosis? Do I tell neuro that GP has suggested this from reading the letters from him? I also noticed that my appointment with my neuro on 22nd is not in the normal neuro outpatients but in the neuro daycare clinic which I found a bit worrying…

Any thoughts on all of this would be appreciated because all of this is getting a bit ‘real’ now.

Thank you guys xx

2

Hi Amanda, I’m rather surprised that GP has shown you the letters and given his opinion. That would normally be the job of the neurologist.

From what I can gather with my very limited knowledge, having one oligoclonal band in your spinal fluid is quite unusual, and I just read something online where somebody’s neuro wouldn’t diagnose MS with only one ‘o’ band… but also having ‘o’ bands in the spinal fluid is NOT a definite sign of MS (other conditions show them too). It is just one more piece of evidence that they put together with the other stuff to try and diagnose.

With brain lesions (showing on MRI) you need to have lesions both in space and time. This means that the lesions must be showing in different part of brain and that they have occured at different times. It does appear that you have one new lesion showing since previous MRI but doesn’t say if in same place as previous lesions.

You will no doubt have read posts by Karen (Rizzo) on here. She is far more knowlegable than me and I’m sure she will answer your post when she’s on the board.

I would say to you that you should be prepared to POSSIBLY getting a diagnosis when you go back to neuro. They might at this point give you a diagnosis (dx) or they might want to monitor your symptoms for a bit longer to see how you progress.

I desperately hope that I am not adding to your fears here. You need at this point to remember that IF (notice big ‘IF’) you are dx with MS, that it is different for everyone and many many people live their lives with MS without it having a huge impact… continue to work, have relationships, have sex, have kids, drive cars… etc etc etc just like everyone else. Even if it has more of an impact, life goes on. It is NOT the end of the world.

Try at this point to be open minded and I say, prepare for the possibility of a dx… although you are absolutely right… the GP’s dx is NOT official. Wait until you see the expert … that is the neuro and not the GP.

I hope I have answered your questions well and have not added to your worries.

Pat x

3

Amanda I just realised that you are new to the site… and I didn’t say welcome! So here’s a BIG from me.

Pat xx

4

Hi Pat and thanks for replying - you have pretty much summed up what I am thinking at the moment - yesterday I was quite shocked at what i was being told by GP and also what I saw on the letters - what the neuro said to me was far from different to what he said in the GP letter ;-S but today i am more focussed and will wait to see what neuro says on 22nd, although I will tell him what the Gp has done/said with me so far. In fact I am thinking I might ask GP to give me copies of those letters as at the moment I am all muddled so this may help

I think the NHS is fab organisation but in my case they had already failed me by forgetting about me for a year - all of this would have come to light a year ago if they had raised the appointment (which my neuro had admitted).

Anyway - my opinion at the moment is that okay, this MAY be a potential dx but at the end of the day, it’s not like someone has come and chopped both my legs off and there are many more people much worse off then me at the moment.

I am waiting with baited breath!

5

Oh and with regards to the ono-watsit bands - the letter did mention them in a plaural sense …

6

It’s looking awfully like the neuro is going to confirm MS Amanda, but there is never anything certain in neurology so be prepared for absolutely anything on the 22nd.

The LP results being in the plural mean that your LP result was positive. The general rule is that MS causes more than one oligoclonal band in the CSF which isn’t in the serum (the blood test) whereas none or one is normal. A positive result does not mean that someone definitely has MS, but it does make it a lot more likely.

The fact that your recent MRI showed a new lesion means that you cannot have had a one-off attack. Again, this makes MS more likely.

BUT, whether or not the neuro can diagnose MS depends on the first MRI. If that MRI met the criterion for diagnosing MS (i.e. at least one lesion in at least two places that are typical of MS) or if this new lesion brings your images up to meet that criterion, then a diagnosis of MS is very likely. However, if this new lesion isn’t in the “right” place, the neuro may choose to delay diagnosis until something else happens / you have a new MRI showing new lesions.

Whatever happens, please do not be overly alarmed or worried about having a new lesion. It is a very strange fact that the number of lesions and the size of lesions does not tally well with how bad someone’s MS is. In fact, I know of people with loads of lesions who are very well and people with hardly any lesions who are badly disabled. That’s MS through and through - it does like to keep us guessing!

Is this an official diagnosis? No. Only a neuro can diagnose MS.

Should you tell the neuro when you see him? Tbh, yes, I think you should. It will make it very much easier for him/her then to confirm or deny it! And making things easier for neuros is never a bad thing - rather good to have them on our side!

Appointment location: don’t worry at all. I’ve seen my neuro in neuro outpatients, geriatrics and the limb fitting centre! They hold clinics all over the place!!!

Finally, I just want to ditto Pat on a crucial thing to hold onto for the forseeable future: if it is MS, it really is NOT the end of the world.

Karen x

7

Thank you so much ladies, and karen your knowledge is reassuringly outstanding :slight_smile:

My GP mentioned that very same about the LP and in his word about the second lesion - ‘its not good news that there is one, but it is better news that there is only one’.

I am going to make some notes now about what the Gp said and also about how I’ve been feeling recently - numbness in the left arm, painful spasm in my left foot (GP wondered if the new lesion was in a place that affected the left hand side of my body), strange and disturbing crawling feeling on my scalp, sore eyeball/blurred vision and tiredness to the point that I have been having to have an afternoon - early evening nap! Oh and memory problems too - forgetting appointments and shamefully forgetting about a birthday party my son was to attend - despite the invite being stuck on the fridge for me to see everytime I opened it (hangs head in guilt lol).

I will let you know how I get on on 22nd - but before that we are off to see the Olympics on saturday and small break in the Lakes with my brother and sister :slight_smile:

Thanks again guys xx