LP Results.

New diagnosis and before diagnosis
1

Hello to all,

I received a letter from my Neuro a few day’s ago stating that I had tested positive for oligoclonal bands following my LP, no surprise there as I knew this would be the case, every test so far ( the lp was my last diagnostic test to be completed ) has pointed to a dx of MS being imminent, and I’m due for my next Neuro app on July 4th …

Here’s my confusion / question / worry . . .

It then states that this is suggestive of intrathecal lgG synthesis.

After a quick google I understand ( I may be wrong here ) that this is used as a marker for progression in PWMS, and SPMS was also mentioned.

I just can’t seem to get my head around this, or understand the implications, and now I’m thinking or overthinking that I’m about to be dx with either SP or some kind of aggressive form of MS.

I thought I was relatively prepared for my dx but this has knocked me for six, I know that ms is ms and whichever letters precede the ms are just variants of the same disease but I 'm scared that this implies my ms is alot more advanced than I first thought.

I’ve had various symptoms over the years, possibly as far back as my 20’s and I’m 45 now but could I really have had rrms without knowing ? I know to be dx with spms is pretty rare without rrms being the initial dx.

My main symptom now is mobility which has declined considerably over the last 2 years as in the distance I can or rather cannot walk before needing to rest and although I’ve suspected I’ve had ms for a few years I was thinking I was relatively unaffected by it until now.

Am I letting my imagination run away with me I wonder, can anybody shed some light on this lgG stuff ?

I know I’ve not long to wait for my dx now and I realise how lucky and straight forward my journey has been compared to many others, 5 months in total from my 1st gp app till now, maybe the realisation is finally hitting me, I’ve been so positive but now feeling abit hopeless and more than abit scared …

Thanks so much for reading :slight_smile:

Ness x

2

Hi Ness, it sounds that your symptoms.walking are very similar to mine also Ive been avoiding seeking treatment for years, now the symptoms are coming.on much more rapidly and I think i must be spms or on the verge of a major relapse if its rrms Its hard to.tell when your waiting for.dx. I hope yo get your answers Someone here will definately give them, and I.hope all goes well for you. Sorry i cant give them to.you its all a.bit new to me too. Take care Ness, F. xx F

3

Sorry, I can’t shed any light on the intrathecal lgG synthesis, but I do know that while it’s rare to be diagnosed with SPMS without a RRMS diagnosis, it does happen. Another sorry Ness, but it also sounds fairly likely, given the decline in your walking over the past two years. Please remember that it’s only a label though - your body isn’t going to suddenly do things differently because of it. If you were thinking that it’s MS, but that you’re relatively unaffected, then you still are! The label doesn’t change that.

Also remember that everyone with MS is different. You get people with very mild RRMS and others with very severe RRMS. The same applies to SPMS and PPMS. So, while the “progressive” bit is very scary, it does not necessarily mean “severe”.

I hope the appointment goes well. Let us know please?

Karen x

4

Hi Ness

In 2006 I was diagnosed straight away with SPMS, it was quite a shock at the time but it really is just a label. There is no reason why SPMS should be more aggressive than any other type of MS.

6 years after diagnosis I am still walking, admittedly slowly with a stick and I continued to work for quite few years after diagnosis. Work had to make me redundant to get rid of me (another story) but the point is I was still able to work 2 years ago.

I know people with RRMS who are far more badly affected by their MS than I am. I wake up fairly well as I went to bed, the only medication I take is to help control my bladder. My main problems are mobility and that has deteriorated slowly. The other thing that is worth remembering with progressive MS is that it can plateau so the future is by no means certain.

MS is a b u g g e r there is no getting away from it but SPMS is as unpredictable and variable as any other form. I know how hard it is to come to terms with this but life goes on, admittedly differently, but it does go on.

Good Luck!

Anne x

5

Thanks for all the replies,

Karen thank you, you make perfect sense and I know it is just a label, it’s definately that word ( progressive ) that I’m struggling with :frowning:

I just think I’m in the middle of a major wobble right now but hopefully once I have a confirmed dx I will feel more positive and be able to face it head on, I’m second guessing atm so I think it’s still the fear of the unknown .

And thanks Anne, it’s reassuring for me to read your reply, I think mainly it’s the lack of treatment available for sp/ppms that worries me.

I was thinking I’d done myself a favour by just getting on and dealing with symptoms, knowing all was not well but seeking no real help and ultimately delaying a real dx of anything but now I’m feeling as if burying my head in the sand has cost me the chance of DMD’s or any chance of slowing down the progression, I’ve kind of shut the stable door long after the horse had bolted lol :slight_smile:

I will let you know how I get on at my next app and thanks again :slight_smile:

Ness x

6

Hello Ness,

Many years ago (to many) the whole of my left leg went numb, I was in hospital for 7 weeks, I came out not knowing what it had been. I suffered with pains round my chest and back, still no dx, trouble with my eyes, I has Iritis, Uvietis, Glaucoma, cataracts, and ON, but the latter I didn’t know what that was, until now. Very painful. I have been in out of hospital many times and still no firm dx. Just to let you know I’m 65 and still young at heart. Medicine has changed an awful lot since I had all my symptoms. I used to drag my right leg and wondered what the heck’s going on here. Then it all seemed to quieten down, remember these were all seperate occasions. In 1999 I was dx with Ankylosing Spondylitis, in 2010 I was dx with Lupus and APS. Then I started getting myoclonic jerks, I couldn’t sleep at night they were non stop. My rheumy noticed them and I was referred to a neuro, who sent me up to Kings College Hospital for MRI, VEP and loads of other tests, but added she didn’t think I needed a LP as it wouldn’t tell her what she needed to know. I also suffered with tingling in fingers and toes. Before I could get the results of these tests from my neuro I saw my rheumy who said I had RRMS, so I accepted that, not happy but at least I knew. I was allocated a MS nurse who said I think you’ve got SPMS, I thought no way! Then my appt’ came to see my neuro and she confirmed in 2011 that indeed I do have SPMS. I was so shocked and upset. Apparently all what I had experienced over the years were the episodes of RRMS, and I didn’t have a clue. Having said al that my life is no different except the ms is with me all the time and I now work around it. Don’t be scared as if like me you’ve skipped the part of knowing you’ve had RRMS and gone straight to SPMS I feel lucky as I would have been so scared. I’m not now. If you need anymore info please pm me I’d be only to pleased to help if I can. Good luck with your neuro appt’. Walk in and smile, and then walk out and still smile.

Janet

x

7

Thanks Janet

Have pm’d you. Ness x