Relapse Or Symptoms ?

Everyday living
1

Hi there,

I’m sure this has been asked numerous times but It’s nice to ask for an opinion when in doubt.

I was diagnosed with Relapse & Remitting around 4 years, however over the last 2 years I have felt that my symptoms are gradually getting worse, especially the fatigue side of things if I over do things and dont rest, however I have not had a confirmed relapse at all in the 4 years since being diagnosed.

Anyway cut a long story short, over the last week I’ve been feeling very fatigued, far more than usual, even though I haven’t done anything more physical than I normally would, and a few days ago I just could not move my left leg (always been my weakest leg), without a dragging numb pain going down the whole of my leg, which started to ease off but is now back.

Both legs are just so heavy to move but the left on is also very painful.

When I try to walk its like I’m walking in robotic steps for a few paces before I can sort of walk a bit better., this has been like this for a good while though, probably months.

My legs very stiff and heavy when I first stand up or get out of bed or try walking too far…

Now then, over the last 5 days I’ve come down with an head cold, running nose , little bit of a cough, nothing major but a general common cold.

So my question is probably so obvious, am I have a relapse, or am I feeling worse due to my cold.

If its down to the cold why was I feeling so low before I had the cold symptoms.

Any advice really appreciated.

Ps.

I take Gabapentin for surge like sensations in my legs but personally I dont feel they do anything for me, so started to cut the dose down slowly about 3 weeks ago so that I could then ask the doctor to try something else ?

I’m also on D3 5000units daily.

2

hi jactac

i feel your pain.

it is tricky to know what a relapse is.

get your pee tested for a UTI.

contact your ms nurse.

hope you feel well soon, or less awful.

my ms goes from a bit awful to very flipping awful.

carole x

3

I think I have something similar to what you describe. I have secondary progressive with occasional relapses as well. I had a cough and a cold, and then last Sunday I had a relapse. For me that means my right leg just seizes up. I don’t have any pain, but my leg just doesn’t work from the knee down. It was late in the evening so I dragged myself into bed and just slept it off. In the morning I got some feeling back, but was very slow moving around, doing the holding-on-to-furniture thing. By the evening I felt better and on Tuesday I could walk across the kitchen floor on my own. Today, Wednesday, I did my regular exercise routine with the physio and feel much better.

For me it seems that the cough and cold saps my energy level, so my nerve tissue thinks sod this I’m off and closes down for the day. I get the rest and it perks up again and goes back to work. So it’s a relapse on top of a cold which exacerbates my main symptom which is a loss of feeling in my right foot area. That’s just what I feel, it has no clinical basis whatsoever.

4

Had an appointment with MS clinic yesterday to discuss what has been happening lately, the consultant thinks theres a “hint” of secondary progression, which if I’m honest came as no surprise what so ever as I’ve been seeing a slow progression in my condition for about 2 years.

The frustrating thing though about this is that each time I’ve spoken to my so called “specialist nurse” about my concerns over the last 2 years,he has not really taken on board what I’ve been telling him, almost passing my new constantly ongoing symptoms off as part of having relapse & remitting MS, instead of realising this could be going into the next stage, which it clearly has.

I’ve said to my wife, family and friends for 2 years that I know I’ve progressed, we know our own bodies for god’s sake !!!

Any way the consultant has put me on Baclofen to try and help with stiffness/heavyness in my legs, offered some physio and is arranging an MRI because he thinks there could be a disc pressing on a nerve in my back which is causing a problem with my foot.

Apparently theres no treatment for secondary progressive as yet so like many other MS sufferers I’ll just have to see what the future holds.

1 Like
5

He (consultant), also said to stick with the Gabapentine as it can take a little while to take affect, so I’m going back up to 300ml 3 times a day.

In fact I’ve done some research on the net about Gabapentine and there are a number of trials on people with MS and every trial had very positive results when used for spasticity or spasms.

6

a cold or virus/infection can temporarily make ms symptoms worse for a few hours/day/weeks.I find after a nasty virus i have a relapse around 6 weeks after.

7

Thanks mrsJ,

I do still have a bit of a cold so I’m guessing that its not helping things.

8

Hello. I’ll be following this thread with great interest. I too was dxd with RRMS two years ago. I also feel worse now than then. I had some kind of a relapse at the end of September - I had an appointment with the neuro in November and he put me on a course of steroids even though it was quite a while after the ‘episode’, as I call it. I wasn’t keen on the idea but he told me it might reduce any inflammation. I did ask him whether I was now secondary progressive as he thinks that I’ve probably had MS for about 20 years without knowing. He said not. I did wonder though - if you have a secondary progressive label does that mean that you are no longer qualified for DMT’s?

I finished my steroids yesterday, thank heavens - I had two days of IV then a four week oral taper, and when I saw the senior MS nurse yesterday for an appointment I told him that I felt worse after the steroids than before, and that I wouldn’t be taking them again in a hurry! He’s ordered an MRI (last one was in February) and if the results are worse I might be changing from Tecfidera to Gilenya.

I’m a patient at a specialist bladder clinic where my chronic UTI is strictly controlled.

Drives me mad, this MS - not least because it’s so vague and imprecise and seems to affect everybody differently on different days.

Louise

9

Hello all my lovely friends.

I am sorry to hijack your post but I was wondering if I can ask a few questions regarding relapses as I have only ever experienced one in the 8 years I have had this m.s although when it happened it totally scared the life of me.

At the same time as the relapse I was being treating for breast cancer and just about to go in for my lumpectomy. I am so sorry for all you lovely folk who have read this all before.

I have since had a full recovery day 4 of having oral steroids and the day I got my results from the op. My oncologist says for now I should not start dmd’s with me being on the tamoxifen.

I had a spinal and brain mri in dec and the brain is the same as its been with no progression but there are some lesions on my spine. Now the neuro does say in the letter he has nothing to compare this scan with and they may indeed be old lesions but with the symptoms I had during the relapse its relevant. This was my first ever spinal mri.

My question I suppose is will not being on dmd’s mean I will never get better if it happens again.The only one that i could maybe have in the future is copaxone but for now thats a no.

Sorry for the rabble guys, just kinda spooked now but am telling myself the lesions are old ones, there for years and will cope with the here and now. Love to all, Mary xxx

10

My consultant basically said that even new lesions do NOT necessary say that you have progressed to secondary progressive, the opinion is more based on how your symptoms have increased and basically not gone away.

When I was first diagnosed 4 years ago I was told that I had probably had MS for many years but it was only now properly showing its ugly head.

I can recall a time many many years ago when I suffered from tingling in my feet and legs and a gloved sensation on my hands but at that time all that was available were basically very basic xray machines, so my symptoms were put down to a compressed disc in my back, nothing was ever chased up as things like MS were not really heard of then, but now my consultant thinks those feelings I had then could very well of been the start of the Relapse & Remitting MS.

11

When I asked about DMD’s he said nothing yet available for secondary progressive, UNLESS the condition is with remitting occasions.

However, from what I understand it’s difficult to actually say if your remitting with secondary progressive.

This MS really is a mine field to actually work your way through to get proper advice and treatment.

12

Strange how our symptoms are similar, jactac! My consultant thought my MS dates back to 1997, when I had problems over the summer and an excellent rheumatologist/diagnostician dxd me with fibromyalgia. At that time I’d never heard of fibromyalgia and nothing neurological was suspected and it didn 't really bother me after that so I didn’t consider that I actually ‘had’ it. The neuro pointed out that there was not much in the way of treatment back then so I would probably have been better not knowing, which turned out to be the case.

At that time I had young children and a sister-in-law who had progressive and increasingly severe MS (she sadly passed away four years ago) so I’m glad I didn’t know, with hindsight.

Is there any evidence that DMT’s help with secondary progressive? I wondered whether a patient who is on a DMT for RRMS and then gets officially dxd with secondary progressive has to come off DMTs. NHS not wanting to pay for the DMT in that case? Or am I just looking for a conspiracy theory here?

Yesterday I saw my fab osteopath - I’ve had a lot of back pain this week - and he said that one of the side effects of steroids is in fact muscle pain. Makes a lot of sense. Feeling a bit better today. I hadn’t realised about the muscle pain though.

One of the favourite sayings of the wonderful Prof at my bladder clinic is that ‘medicine is an imprecise science’. You can say that again…

Louise

13

My understanding is that when you go onto secondary progressive its all down to how you as the person with MS actually reacts to this stage of the illness.

In other words its possible you may have secondary progressive WITH added relapses so if thats the case you may be offered DMD’s to control the number of relapses, however , from what I understand most people with secondary do not have relapses so may not be offered DMD’s.

I would think, and its just a guess that if a person was diagnosed with RRMS and was already on DMD’s for the relapses, then went onto secondary progressive, they might stay on the treatment, but I guess its how their own neuro wants to proceed after looking at the individual’s history and condition at that time.

I pacifically asked if I would be offered DMD’s if I was now secondary progressive and his answer was, “at the moment theres only a hint that you may of progressed, and unfortunately theres no treatment available on the NHS at this time for secondary progressive” anyway.

I took this as, even If he confirmed that I had progressed he would NOT offer DMD’s because I have never had a confirmed relapse whilst I was RRMS, I had just gradually got worse.

My cousin is on DMD’s but she was having constant relapse’s for a few years, she’s now very stable with her condition and swears the DMD’s have changed her life for the better.

My sister however is pretty much like me, no real relapses but a gradual decline in condition, so she like me have never been offered DMD’s.

If we were to step back and look at the 3 of us when we were all first diagnosed with RRMS and take a snap shot over 2 years of how we all were over that time period you would say that my cousin was probably going to end with a greater level of disability, however that has not been the case, far from it in fact, she can walk for better than myself or sister and has a far better outlook on things.

Its seems as though the DMD’s have turned her life around.

She’s also on a drug for fatigue, which again she swears has helped immensely.

My honest opinion is that if you are diagnosed with RRMS but do not indicate to your neuro or MS clinic that you have had a relapse or suffer from regular relapses then you dont seem to be followed up or offered any treatments like DMD’s.

The communication between myself and my local MS clinic ONLY EVER comes to life if I contact them with a question or concern.

Yet my cousin has regular follow appointments at least twice yearly, which I can only assume is due to her having regular relapses in the early years ?

14

Well, I’m feeling lucky now. I have medical insurance so was dxd privately and when it was confirmed I went back into the NHS system under the same neuro (only see him about once a year now though) and he was keen to get me on a DMT quickly - this took a few weeks under the NHS, and it was Tecfidera.

As I think I had a relapse at the end of September he put me on steroids and apparently I’m on the list for another MRI (last one was in February) to see if there’s any change.

The more I read on here, the more baffled I feel! Heaven knows how the neuros manage - maybe it’s easier to understand from their side of the table!

Louise