Forum

Would welcome your opinion *1st time poster*

Hi Everyone,

I hope your all keeping warm in this icy weather! I haven’t posted before and would really love some advice if you can bear with me with this hopefully not too long post!

I was dx in April 2012, after 4 years of going to my GP and them putting my symptoms down to “work related stress”. I have lesions on my brain and spine evident on my MRI. I am not currently on any meds as my Neuro has said I have to have 2 x clear relapses in a 2 year period to be eligible for the drugs. I am a 36 year old female with a 6 year old little boy and a part time job.

I guess my main symptoms are numbness (in lots of places!), fatigue and low mood. I can kind of stay on top of these with trying to get rest and managing my stress (easier said than done!). I take Fluoxetine, Vit D, Omega 3 (Fish & Flax in highish doses).

In August this year I started with a sore right arm, kind of felt like a pulled muscle. It lasted quite a while and at the time I put it down to dragging luggage about on holiday. This happened around the same time as a UTI and some urinary hesitancy. In October it transferred to my left arm and pretty much rendered the arm useless, with severe night pain. My G.P said to contact my M.S Nurse so at this point I contacted her to ask (beg) about pain relief. I also started to pay for twice weekly physio to try and help and until I could get a referral to an NHS physio.I didn’t get a response but I was with her the following week for my annual meeting so we talked about it then.

I explained my symptoms and she said she would grab my Neuro to come and have a quick look, which he did and proceeded to do some “strength test” along the lines of push up on my arms, put out onto my arms - whilst he provided resistance. After a few minutes he declared it was not a relapse and must be musculoskeletal and sent me on my way with a promised referral to an NHS physio. They have said they wouldn’t perform any more scans until I was placed on a DMD in order to get a baseline.

The physio referral still hasn’t come through so I am still paying independently for my physio (eekk!!), which seems to be helping with the muscle tightness in my shoulder that was radiating down my arms. She says it could very possibly be my M.S but if they won’t scan then she can just continue to help me with my symptoms.

To cut a long story short I have now got two identical numb feet (incl soles of feet and lower legs), you could literally stick a pin in me and I wouldn’t feel it. I think I am so used to being told whatever symptoms I’ve got are not M.S that I have told myself its purely a podiatry issue and am going to see my G.P on Monday.

I’ve almost convinced myself I don’t have M.S as I feel I’m just “fobbed off” when I tell them about any symptoms.

So I guess I would value any opinions (if you managed to read this far!), do I need to be more firm and direct with my Nurse & Neuro? My family simply can’t understand why I’m not on meds, even though I try to explain why - I guess they want the best for me. I also feel that I can’t be in pain relief limbo like that again, being shunted between my G.P and M.S Nurse with no fast response - it was a real struggle!!!

Thanks for reading!

x

Hi

Welcome to the boards.

I’m sorry I’m not going to be huge amounts of help as my experience of MS is very different to yours.

I have SPMS and so there are no meds available and I rely largely on self help. It did take a few years to come to terms with this. For me, physio has been a huge help. I have largely funded this myself as the NHS provision did not meet my needs.

MS is an elusive disease, don’t expect the medical profession to know all the answers they don’t. On the whole they try their best but are often fumbling around in the dark.

It will get better for you as time passes and they get you on a DMD.

Good Luck

Anne x

P.S. If it is of any relevance, cold/hot weather always makes me worse.

How very frustrating for you. It seems to me that some neuros are not really interested in sensory problems that are not accompanied by motor ones like weakness - almost as if they think sensory ones don’t count. I do think they would rapidly change their minds about that if they happened to have some themselves!

If your consultant neurologist an MS specialist? If not, I would be inclined to think about getting seen by one who is. You can search on the ‘near you’ tab on this site to see who’s who in your area. And please do keep a careful note of ?MS things that go the matter and please do go to the doctor with them to make sure that they are documented. Some neuros are also reluctant to accept that anything has happened unless it has been documented by them or by another person of doctor class. I strongly suspect that there is a big overlap between this group and the ones referred to in my first paragraph!

Alison

Hi Loubylou, and congratulations on your first post!

Well, obviously I’m not in a position to diagnose a relapse, BUT when I had the relapse that led to my diagnosis, the presenting symptom was profound numbness of both feet - just like you are saying. I felt that if I trod on a drawing pin, I wouldn’t know about it. They were insensitive to touch, pain, even hot and cold (I had to be very careful about stepping into a bath, as dipping a toe didn’t work - I couldn’t tell the difference).

Anyway, in my case, that definitely was a relapse, and was linked to a spinal cord lesion (spinal cord lesions typically cause numbness or abnormal sensation in the lower extremities).

Now you already have known spinal cord lesions, so it’s possible you’ve simply had a cold or something, which has aggravated old damage (infections have a tendency to do that). BUT I certainly wouldn’t bother with podiatry - I think that’s a complete red herring. I think this is a nervous system problem, and the only issue is whether it’s new, or whether some other factor has temporarily reactivated old damage. I don’t think you should accept this one as “not MS”. I’m not a doctor - but the same symptoms were enough to get me referred to a neurosurgeon (suspected slipped disc, initially), and then onto an MS specialist. Something is wrong nervewise. You don’t get complete bilateral numbness unless something’s messing with the signals. Report it, and hopefully it will be accepted as a relapse this time.

But as an aside, the two relapses in any two year window are the standard qualifying criteria - so you can explain to your family those are the rules. Disease modifying drugs (DMDs) are not routinely given to all who are diagnosed.

Additionally the two relapses have to be “clinically significant”, which unfortunately is not defined anywhere, and some consultants take it to mean: “disabling” or: “bad enough to need steroids”.

It’s possible that even if your consultant did suspect you’d had the odd couple of mild relapses, he did not judge these to be “clinically significant”. Numbness of both feet was held to be “clinically significant”, in my case, even though I was not disabled in the way most people think of it - i.e. I was still working, walking about, doing the shopping etc. But not being able to feel your feet/legs is significant, even if they otherwise work properly.

Yes, you may have to be more assertive.

I got caught in a loop, even about medication it was agreed I should have, with hospital and GP surgery each saying it was the other’s job to prescribe it! The hospital would have done so, only it was just Sod’s law their system was down on the day I visited, and of course, prescriptions can’t be done with pen and paper any more, can they? Oh no! So the neuro said she was terribly sorry, but she couldn’t do it, so she would ring my surgery and tell (not ask!) them to do it.

Well, I could never get to the bottom of whether she phoned them, or whether she didn’t - but she seemed very efficient, so I suspect the surgery didn’t make a note of the call. Would they prescribe it? Would they heck!

I’m not suggesting you do this, but in the end, I had to shout. The drug was one GPs are allowed by law to prescribe - they don’t technically need the hospital’s permission. So they were arguing the hospital should do it, but the hospital were saying: “What? Why haven’t they just done it?”. So I don’t know if it was a budget issue, or what - neither of them wanting it to come off their books. But in the end, I did have to raise my voice, and point out how ridiculous it all was - that nobody was even disputing I should have the drug, yet still nobody would prescribe - meanwhile I was left without relief. After I shouted, it was fixed, and touch-wood, I have not had similar trouble since. Honestly, it was like a pair of squabbling kids, with nobody thinking about the poor patient, who is struggling along without meds.

Hope you have better luck!

Tina

x

hi

as you have been told by your neuro and by tina above, the rule is 2 significant relapses within a 2 year window.

however i was having a relapse at the time of my diagnosis and as far as i’m aware it was my first and only one.

i was immediately put on a dmd.

it makes me wonder did my MRI show millions of lesions?

seriously consider changing your neuro if he isnt a ms specialist.

look up your nearest ms therapy centre (most cities have them).

i go to the one in trafford, manchester which is 15 miles away.

there i can have physio with a neurological physio for £10 which is substantially subsidised.

there are lots of other therapies which all seem to have a feel good effect.

good luck

carole x

Hi Loubylou,

Sorry to hear you are having a hard time. Like Tina I experienced numb feet which was classed by my neuro team as a relapse-ok it is a sensory symptom but even though I could walk I was prescribed high dose steroids and had 2 weeks off work. I certainly didn’t drive as I felt I couldn’t feel the foot pedals. I would tell your GP that the numb feet are an MS symptom and get in touch with your MS nurse so it an be recorded as a sensory relapse. You may or may not get steroids prescribed as some neuros don’t for sensory relapses but don’t suffer in silence.

All the best

Cathy

Hi Everyone,

Thanks so much for coming back to me. Your comments have given me some good food for thought!

I guess I am still getting used to the elusive nature of the disease, I like things black and white with a clear cause and effect (not going to happen with M.S!).

I had a really good appointment with my GP yesterday. He logged all the symptoms I was having and has signed me off this week with an “M.S flare up”. I have also logged symptom details via email with my M.S nurse (no response as yet).

As my neuro has classed my non-working arms as muscleoskeletal (sp?) my G.P has said that as the problem has been around for 5 months he wants to refer me to a neck and back specialist for them to take a look - so result there too. I’m keeping going with private physio till me NHS referral comes through. I am definitely going to look at the M.S centre in Trafford - it’s a quick nip round the M60 for me from Wilmslow so really easy to access.

My numb feet and calves are still around, I have no sensory feeling of temperature and the numbness is spreading to other parts of my lower back and groin area. I’m going to roll with it, rest up and drink hot vimto and may make a start on some xmas chocs!

Thanks again, Louise x

Hi Louise,

I can’t make sense of this - not because you are not being clear (you are!), but the attitude of your neuro. Healthy people’s limbs don’t stop working for no reason. Even if it is “musculo-skeletal”, it’s surely caused by the underlying neurological illness, not some freak coincidence?

And if your GP has signed you off with an “MS flare up”? If it’s not caused by something obviously external, like having an infection and a temperature of 102, then it’s what normal people (or normal MSers) call a relapse.

Personally, I don’t hold out much hope for the neck and back specialist. I suspect all they will find is the muscles are tight, or weak, or both. But that is a symptom, not the underlying cause. What on earth is a back specialist supposed to do about a CNS problem?

I don’t like the sound that the numbness is spreading - to me that points even more strongly to the fact you are having a relapse. I hope your nurse will get back to you soon. You may not want or be offered treatment for the relapse itself, if you’re not finding it disabling. But you do want it recognized by someone, as it affects your eligibility for treatment - now or in the future.

Tina

x

Hi I have experienced pain in my neck travelling down to my shoulder blade and left arm this has happened seven times this year but I never really told my nurse about it cos every time I went for an appointment the problem was never there and I would just forget about it. But this month it came back with a vengeance and after a week and a half of pain I woke up and couldn’t take it anymore so I got my brother to take me to a n e where the gave me codeine and pregablin (nerve drug) and arranged for an Mir (which I’m having tomorrow) I then phoned my nurse who has getting the pregablin on prescription with me from my doctor and is going to do another phone consultation with me in a few weeks time!! So maybe you should just take yourself off to a n e they are not Ms specialists but they can give you pain relief