Very mild v primary progressive MS?

New diagnosis and before diagnosis
1

Hi guys. I’ve got a neuro appointment tomorrow and I’ve worked myself up into a bit of a tiz, which is not like me at all.

I was diagnosed last month after my second MRI and given 5 days of steroids to see if it helped my symptoms and also as a way of trying to identify what type of MS I have.

Unfortunately, they didn’t turn me back into superwoman and I emailed my neuro as requested to let him know the outcome and today I received my NHS appointment date (24th October) and a letter from my neuro responding to questions I’d asked him about DMDs & various types of MS-

"I’m sorry to hear that you did not respond well to the steroids. As you know, a number of patients with MS do not respond to steroids.

Coming back to your question it is possible that you have very mild relapsing remitting MS, where the relapses may be unnoticeable. It is also possible that you may have primary progressive MS in which case there are no relapses but only gradual decline in function.

Unfortunately, disease modifying therapy is only licensed for treating relapses. If you are in the progressive phase of the disorder, these medications do not help. We will discuss the possibility of doing further scans and perhaps even a lumbar puncture when we next meet in clinic."

I know the appointment is only two months away, but to be honest, after waiting 8 years to finally get a diagnosis (4 with an ME diagnosis), that seems like a lifetime, so I rang up to make a private appointment and he has a slot free tomorrow, plus I can also keep my NHS slot.

I always thought that once I had a dx, I would be able to just get on with things but I seem to have moved my goalposts and now find I need to know what type I have. I was really hoping that the steroids would work wonders and I could have DMDs and go back to work. Now all that’s going round in my head is that if my MS is so mild, why am I not at work? Am I just being a wimp? It takes me a couple of hours every morning just to get myself up and about because of the pain, stiffness and fatigue and the smallest physical efforts can set me back for days. When I’m feeling really bad I have to crawl to the toilet because I haven’t the strength to stand up and often go without eating because I simply don’t have the energy to walk to the kitchen to get food. Is it mostly psychological or am I only thinking like that because I’ve been told for so long that it’s ‘all in my head’?

Sorry to go off on one, it really isn’t like me but I suppose the old saying is true. In order to fight your enemy, first you must know his name…

If you’ve managed to read this far, thankyou and please wish me luck tomorrow.

Mags xx

2

Hi Mags, it doesn’t sound very mild, your symptoms nearly mirrored my own specially the too tired to prepare food for yourself, I havent reached the stage where I cant walk yet and would’nt consider my problems mild. Also like you Mags things can affect me for days- a short walk will take me two days to get over. In conclusion Mags your not being a wimp and your symptoms dont sound psychosomatical and the best of british tomorrow. Frank.xx

3

Thanks Frank, I think my head is just spinning at the moment.

I seem to keep going through the same routine lately. I try to do more in case I’m becoming lazy/unmotivated, end up in bed for a few days realising that I’m not lazy/unmotivated, I’m just unwell and then after a few days in bed I start to question whether I’m being lazy/unmotivated and the whole thing starts again. You’d have thought I’d be used to it by now!

I don’t seem to have relapses, just different symptoms appearing from time to time. Sometimes they go away for a while and then come back again and sometimes they stay. The only things that tend to stand out now are days when I can walk normally or have some energy to do things.

Sorry for waffling on, it just helps to write it down and think it through.

On the up side, at least I won’t have to inject myself, which is something I really wasn’t looking forward to and if I’m a PP hopefully the comments about deconditioning and the amount of time I spend in bed will stop.

Mags xx

4

I have thoughts about activity too, is it me or the illess, I should find out soon. I’m puzzled though because you and I have similar symptoms that have been happening for a few years yet you’re suspected PP and mine is suspected RR. Keep you fingers crossed we both get answers soon. Meanwhile all we can do is soldier on. Stay in bed as long as you like Mags you have full permission to remain on light duties. Just make sure you eat enough we cant have you wasting away on us ! So you have a nice day, see you later. Frank xx

5

Mmm…tis all very odd isn’t it? I’m starting to think a lot of it is down to the personal opinion of the neuro, which is a tad worrying.

Mine’s a pain specialist and he was talking about possibly referring me to an MS specialist if ‘we don’t find any answers’ though I think he wants to dx me himself & I’ve noticed he’s now down as an MS specialist on the home page.

Yes, hope we get some answers soon Frank, for our sanity if nowt else.

Standing down now to get some kip so have a good one hun.

Mags xx

6

You too Mags. Frank xx

7

Hope you don’t mind me asking, but how much is it to see the Neuro privately? I too have looked looked under the ‘near me’ and the Neuro at my local hospital is listed, but he is an Epilepsy specialist ! No MS specialist at my local hospital at all, Good luck and fingers crossed for your appointment. Might it be worth asking him to refer you to the 'other" MS specialist? Sending you hugs and positive vibes!

8

Good luck for your appointment. Sam x

9

Good Luck with your appointment Mags. Please let us know how you get on. Teresa xx

10

I hate it when doctors use that word mild! Mild depends on your perspective - if you’ve been a relatively healthy person and then have struggled to walk to the end of the road then for you thats not mild even though you are still able to walk. Mild is not a diagnostic criteria for MS - you either have it or you don’t. Its almost like some doctors want you to come in a wheel chair, peeing on yourself before they take notice. Sheesh - sorry vent over.

The RRMS / PPMS debate is a difficult one but its certainly not unreasonable of you to ask for the opinion of an MS specialist (though if he has now become an MS specialist that maybe difficult). I certianly have no experience on this matter as I’m still in the process of my diagnostic journey(1 MS neuro a general neuro) but have been referred to another MS specialist on the assessment of the general neuro I went to for a second opinion and have debated over the options of if this is MS and if it is would it be PPMS/RRMS as I seem to have had a lot of symptoms but thankfully nothing really debilitating as I am still in full-time employment. Like you said though - to fight something you need to know what it is.

Perhaps those diagnosed or with PPMS can give you input on their diagnostic journery and how it was they came to be told they have PPMS rather than RRMS. I’m sure there are many of us that would be interested to know.

Sorry I couldn’t add anything worthwhile but will wish you the bestest luck for your appointment and know that we are all here to support you.

Reemz

X

11

Hi

Going on from what Reemz said, I agree “mild” is a very deceptive word, but

I also think it is easier to cope with something when you know what it is.

I can only relate to my ppms, but symptoms occurred one day (a long time

ago) and the neuro gave me steroids, which done diddly squat. From day one

my symptoms have never disappeared, some days are better than others, but

not gone completely, and over time different symptoms hav e appeared. I take baclofen

for spasms and stiffness, and amytriptline for pain, buzzing, numbness etc, and

whilst they do not take the symptoms away, they can take the edge off it.

I use a powerchair and have done for a long while, but life is still good, and

having friends on this forum to talk to really helps.

All the best for your appointment, let us know what he decides.

Pam x

12

Good luck today Mags.

I’m not sure why the neuro has said it, but I have to warn you that RRMS that has such mild relapses as to be undetectable would not cause such severe symptoms as you are experiencing. So it does look awfully like PPMS. That in itself is not always worse than RRMS though - I know people with RRMS who are much worse symptom-wise than others with PPMS as well as PPMSers with quite mild symptoms and PPMSers whose progression has slowed considerably and even stopped completely.

I think there are clinical (drug) trials going on for PPMS so it would be worth asking about the possibility of getting onto a trial. A lot of neuros specialise in more than one condition so don’t worry about that, but there may be a neuro more active in research - why not ask how easy it might be for him to get you onto any new trials? If he says very difficult, then you can always ask if there is another MS specialist better placed to offer that.

Good luck again!

Karen x

13

Thank you so much for all your replies guys, it’s so good to know there is someone I can talk to about all this and I know you all understand where I’m coming from on this. Biggest fluffy hugs to you all.

To answer your question Apple Pad, the first appointment was about £240, I think, and subsequent appointments are £120. My neuro also works for the NHS at a local hospital and is a pain specialist but also treats MS patients (as Karen said, a lot of neuros spcialise in more than one condition, which makes sense as there are far too few of them around). He referred me for my MRI on the NHS and then added me to his NHS list. If you can, try to find who your local NHS specialist is and then ask if he also works privately. Some neuros will see you without a referral from a GP, which I wish I had known about years ago as it might have saved me some time.

Yes, ‘mild’ is a purely subjective term Pam and Reemz and I find it very annoying. In the way that some people might find a vindaloo mild, I can guarantee that after a few bites I would be drinking a gallon of water and then pooing through the eye of a needle the next day. Sorry about the analogy but at least I’ve cheered myself up and I feel like less of a wimp now!

My sister’s going to go with me this time as I haven’t told Mum I’m going or about the letter. Mum was with me for my dx and got quite upset (she also has MS) so it seems unfair to worry her when she has enough on her plate at the moment. My sister knows about my dx but she’s never said anything about it so it was a nice surprise when she offered to take me yesterday. We shall see how it goes. I’m hoping that if he wants further tests I may be able to have them done and get some answers in time for my NHS appointment, a long shot I know, but here’s hoping. I’ll let you know how it goes.

Mags xx

14

Hi Mags, you`ve probably set off to your appointment by now, so I hope it went well and you got answers…ones you can understand at least. Neuros can run rings round us…especially mine when some of them have difficult accents to decipher!

I have sometimes wondered if it would be more advantagous to have RRMS as opposed to PPMS…mainly because there are drugs for RRMS, wheras with PPMS, all we can take is meds to help with some of the symptoms.

Like the others have said…the word mild gives a totally wrong impression of the desease.

I am still awaiting a firm diagnosis after 14 yrs. For 7 of those I was given a 95% diagnosis of PPMS. Then other numpty neuros decided to stick their oar in and turn my world upside down again!

If someone is suffering with severe difficulties day, day out, then I would think it is more likely to be of the progressive type of MS.

Look forward to reading how the appointment went.

luv POllx

15

Oh Poll, 14 years is atrocious! How on earth are you supposed to deal with it if you’re toing and froing like that? Why are they finding it so difficult?

Mags xx

16

Well, how long have you got? No, I`ll try to condense the last 14 yrs for you.

1998…started tripping up, but put it down to weight gain. ``Pick your bloody feet up, `I said to myself.

1999…saw private neuro, as NHS waiting list was 10 months long

1999…MRI/LP/EMG/VEP/blood tests all came back normal

2000…spasms, nerve pain, falls, bladder.bowel problems…mobility very poor…using wheelchair part time

2000 - 2003…6 monthly visits with different neuro every time. PPMS suspected as problems continued to worsen quite rapidly

2003…given 95% dx of PPMS. Clinical presentation typical of PPMS

2007…saw another neuro who said I didn`t have PPMS, but hereditary spastic paraplegia…turned my world inside out and upside down.

2008…MRI…nothing new

2009…neuro who said it was HSP had left, but had decided it wasn`t HSP afterall…no-one told me…I was fuming!!! Saw another neuro.

This neuro showed me the 2008 MRI with 3 lesions in neck area…he said he felt it was PPMS…sent me for EMG and botox for painful feet (they did zilch! but were sooooooo painful)

2010…yet another neuro said it wasn`t PPMS…not sure what it was…arrgghh!

2011…same neuro…she said I have Spastic Paraplegia…cause unknown…I told her I was disatisfied with lack of full diagnosis…she offered a referral to MS guy in Leeds

2012…Leeds man said he wouldn`t see me…I am sure this is because I said I was discontented!

A couple of weeks ago I had an LP…so painful and soooooooo useless nursing staff on ward…I rang beforehand to say I needed a hoist. I was told they would get one…they didnt, oh its a farce, other problems on ward.

17th October 2012…follow up appt. I`ve been told if the LP shows no proof of MS, I can go for genetic testing for HSP.

Watch this space.

luv Pollx

17

Hi Mags, sorry I didn’t see your post earlier… I was ‘out of action’ for a couple of days.

I was diagnosed with ‘mild progressive MS’ in 2008 after being dx with ME for 2 years.

By the time I was dx my walking had already become very poor and I had usual pains, buzzing, spasms, constipation, cognitive problems, double vision, dizziness etc etc etc.

In 2010 the neurologist told me I had PPMS and then wrote a letter headed ‘possible primary progressive MS’. I emailed her and quesioned the letter… naturally saying she had told me it was PPMS but had changed to ‘possible’ in the letter.

She emailed me back and said really she thought I had 'benign PPMS’!!!

I changed neuro.

The new neuro said there is no such thing as ‘benign PPMS’ (the clue being in the word ‘progressive’. He did some more tests and another MRI and dx me with PPMS.

This word ‘mild’ is extremely misleading. Mild compared to what? It makes us feel like we are ‘putting it on’ and makes us feel guilty.

I really hope your visit today went well and that you are told one way or the other if they can dx PPMS. They have no idea how the word MILD puts us in such and awful position when we are coping with disabling symptoms on a daily basis!

Pat x

18

I hope your appointment goes well and you get the answers you so badly need.

I’ve been undx’d for 5 years, although did get an ME dx in 2008, one I do NOT agree with! My neuro has now told me although my symptoms fit in with PPMS, my tests (MRI/LP/VEP) have all been normal so he can’t carry on with this line of dx. So basically he’s told me he’s ruled everything else out and he’s left with HSP (Hereditary Spastic Paraplegia) although he agrees I have a lot more going on than HSP would give me?? So confusing!! He’s told me Ihave ‘mild’ spastic paraplegia in both legs… Mild?? I don’t tell anyone that as they’ll get the wrong impresion, but the other end of the scale of spastic paraplegia is muscle completley frozen and they can not be moved, so I supose mild is right! But I still wont tell people that, as they wont understand!!

Bets of luck with your appointment, and I look forward to hearing how you got on

xx

19

Hi Mags

Hope all goes well for you tomorrow, and you get some answers, and some treatment! xx

20

Hi all.

Well, saw the neuro and he was very nice. I told him about some of the symptoms I’ve had lately with bowel issues (pressure up under ribs and I couldn’t ‘go’ for 3 weeks but xray showed nothing so GP just shrugged and said IBS) , dizzyness, palpitations etc. and was gobsmacked when he said I should have some more tests on the basis that you can’t put everything down to MS and that I knew my own body.

The problem with heart rate and problems standing is one I’ve had for years and have always been worried about but my old GP put it down to my ME dx (like everything else). So he’s sending me for an abdominal scan and 24hr heart monitor. I just wanted to hug the bloke!

I asked him about further MRIs and a LP and he asked if I could just live with an MS dx for now until we see what the tests show up as he didn’t want to overload me with tests and wanted to see if there was anything else causing some of my symptoms. I was a bit disappointed but think it’s fair enough. When I’ve had the tests I have to call his secretary and he’ll chase the results and write to me and we can go from there.

So, I’m not sure I’ll be able to afford another private appointment for a while but just to put my mind at rest about issues I didn’t even think he’d be interested in was well worth the money and I guess I’ll just have to be patient about the rest.

Poll, what you’ve been going through is atrocious hun and it makes me so angry for you. I’m really hoping you get your answers soon & will be keeping em crossed for you so let me know how your appointment goes or if you get your LP results through before.

There do seem to be a lot of ME’ers around on the site Pat and Jules and I know from some of the ME forums I belong to that there are still a lot of people with an ME dx who talk about being brushed off by their GPs despite showing neurological symptoms. It can’t be a coincidence that the symptoms are so incredibly similar yet it breaks my heart that if you have ME there is still no treatment.

Heres hoping we all get some answers soon.

Mags xx