Looks like that will be that then

New diagnosis and before diagnosis
1

Got my LP today, never want to repeat that again!

I asked why they took blood + CSF. The answer was that they compare glucose levels and such. Just put that in because someone was discussing it a few days back.

I have been given an MS nurse. I brought up the possibility that my CSF tests would be clear. She smiled and said “That doctor would not have assigned me to you if she wasn’t absolutely sure.”

So I get the feeling that regardless of my test today the result will be the same and it is time to wait to see what stage I am diagnosed as.

2

Hi,

I agree it’s unusual to be assigned an MS nurse unless the consultant was pretty confident, so I’m sorry to hear that - unless, of course, you are relieved to finally put a name to it.

MS has types, but not really stages. At diagnosis, there are really only two possibilities, and it’s not (usually) rocket science to tell between them. If you’ve had distinct episodes from which you’ve largely recovered (even if there are still symptoms left), you have relapsing remitting MS. If you’ve never had flare-ups and recoveries, but just got worse and worse from the start, it would be primary progressive MS. Only 15% of people are diagnosed with that, so relapsing remitting is far more likely, but you will know yourself whether you’ve had a pattern of flare-ups or just got worse without the flare-ups.

The third (main) kind of MS is called secondary progressive. It only affects people who have first had relapsing remitting for usually about 10-15 years. So it would be very rare to be diagnosed with it from the word go, as that would basically be an admission you’d had relapsing remitting MS for years, but they’d missed it.

So I think, really, it’s pretty straightforward: you either have attacks (you’ve had at least two), in which case RRMS, or you don’t (and have never had) attacks - in which case PPMS.

I just didn’t want you - or other readers - to think it is “staged”, like cancer. MS is not terminal, so you’ll just be told a type, not a stage. And there aren’t that many to choose from!

Tina

3

Can I possibly ask how long it took for results from mri and when was lp procedure planned was it at initial meeting with neuro or after result of mri, ?

Im sorry to hear you have had a confirmation of diagnoses, I’m in limbo stage atm, and waiting o see neuro on the 19th June x

4

Thanks.

Has added confusion though … I started getting really ill around 1999. I have never had a day in the last 16 years where I have felt fine like I used to.

My symptoms dissipate a bit, but never leave me and I get really bad days where I have almost every single symptom of MS. I didn’t know what MS was about until I got diagnosed with it a few months ago (that will be the RRMS part if I get you correctly) up until then it had been diagnosed as small fibre neuropathy since 2012.

But my symptoms have progressed and also in 2008 I had a CT scan and told it was clear.

When I say progressed I mean I started off with one symptom and it has gradually built up to being most symptoms.

If I go even further back to 1994 I started to sweat all summer and still felt hot in winter. Then 1999 I started getting ill when I was eating. In 200 I went from not needing glasses to permanently needing them. By 2003 I was having that along with nausea and vomiting with extreme abdominal pain. 2008 I had pins and needles everywhere from the waist down, this receded to my feet. Since then it has increased to rolling waves of pins and needles going all over my body. On top of that I have from my knee down suddenly going numb/pins and needles. In 2008 balance and co-ordination issues arose. Now my latest added symptom since 2010 are electric shock waves going through my body. It feels like I am being tazered and overwhelms my senses. I have to remain as still as possible, but sometimes that doesn’t work and every heartbeat causes a shock -which is similar to something else I get which is a sharp pain in some random area that disappears and hits me every heartbeat as well.

Somewhere along the line I also started to get random pain in random parts of my body along a line and between two seemingly random points.

About 5 years ago I was being woken up by sever muscle spasms (especially in the calf area) and in the past 3 years and especially in hot weather I am waking up with every muscle from my should to the tips of my fingers and feels very much like muscle strain -which I would get from prolonged spasms.

Then there is the low tolerance to temperature changes, unable to regulate body temperature, concentration issues, short term memory issues and this complete inability to access memories from certain periods of my life.

I think that about covers it.

Oh, just for fun …I had a stomach emptying test in 2013 which shows significantly delayed gastric emptying so I have gastro-paresis as well.

And astigmatism.

Oh and my right knee muscle spasms, it traps the ligament behind the bone, the only way to straighten it is to rip the ligament, I almost pass out from the pain. Plus theres the time it takes to get as far as straightening it when I am sweating and nauseas from the pain.

So, which one do more than likely have? :slight_smile:

5

As for the label … I am not too bothered about that -what bothers me most is that I cannot fight this. I thought I was going to be able to get treatment then all it would be was a case of physiotherapy and training -which I was used to.

But I have a pain in my back that easily flares up causing me a lot of pain, shooting down my legs and such. Nausea, sweating -that sort of thing follows. I missed that off the list. About 2004 I suddenly fell to my knees, got up and next day I was in agony for months on end.

So I am in a situation where because of gastro-paresis I do not consume enough calories to do very much. Even if I did not have that, I have this pain in my back, also if I move my head too sharply I get a very sharp, very sore pain running down my back which can last for days, even weeks.

Actually, now really thinking about it … If I never had stomach issues and the severe pains that moving the wrong way causes me I’d be up for a fight and the label wouldn’t be a problem. The label really isn’t a problem, it’s the illness and the impossible situation I am in that is.

I have been told I am not going to have a gastric pacemaker fitted because there is too low a probability of success. My gastro has told me (and my doctors) I have not to get co-dydromol, neurofen, amitryptiline, diazepam type drugs. Basically Ibuprofen and penecilin because they will add to my already bad stomach problem.

That is going to significantly impact on what I can get to help me with MS. I can’t imagine steroids for example being very good for someone that can only physically eat once a day. There are odd days that are few and far between I eat twice a day.

6

Hi,

It’s important to note that relapsing remitting MS does not mean “feeling fine” between relapses - though some people do - especially early in the disease. Over time, most people end up with some permanent symptoms - this does not necessarily reflect that they have a progressive type of MS - it’s just accumulated damage from the relapses.

So remission is relative - it just means “better than you were”, but not necessarily “fine”. Even if you have many persistent symptoms, you should still be able to tell if you have definite escalations from time to time, before returning to a more stable level (which is not always as good as before).

As you don’t seem very sure whether you have had these random escalations (called relapses), it may be that you never have, in which case it would be PPMS.

But don’t just assume that. As I say, you don’t have to be symptom-free for it still to be RRMS. It just needs to follow an episodic course.

As for treatment (your other post) - these days you will almost certainly be offered disease modifying drugs IF the diagnosis is one of RRMS (there used to be quite stringent qualifying criteria, and I believe still are, but there seems to be an increasing tendency to accept most people). There is no equivalent, unfortunately, if the diagnosis is one of PPMS.

Regarding symptom relief - yes, it will make it more difficult, albeit not impossible, if there are certain meds you just can’t have. Most meds have less commonly-prescribed alternatives, so it needs someone who’s a bit savvy, and perhaps good at lateral thinking, but there should be something around you can take.

Tina

7

Thanks for the input, Tina.

Much appreciated.

8

It took me 2 years seeing one neuro then I got an appointment a couple of days before Christmas last year and she immediately referred me for an MRI that I got in January.

The first MRI should the signs so then I went for one with contrast In March.

The LP was was as a result of the MRI’s. Reading her notes it seems she was confident from the first MRI, the second was to confirm that and the LP, I got yesterday, is to confirm the diagnosis completely beyond all doubt.

All my MRI’s were within 3 weeks of referral and all results have been available within 2 weeks.

9

Thank you for responding, it’s scary times for me atm, sounds wrong but I am willing to 19th to hurry up and hoping I get some answers soon, x thank you again x

10

The steroids they give to RRMS people in relapse are a short, high dose that can be given over a few days either orally or IV. With your gastric problems, I have no doubt that it would be IV in your case (as it always has been in mine), assuming that the docs think that would be OK. It means 3 afternoons in the hospital, but is perfectly do-able. So don’t assume that you automatically won’t be able to take steroids - you might be fine.

Alison

11

Ahhhh, I see, thanks for letting me know.

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