Neck Swelling?

[Gems]

HI everyone am new to this site!

 

I got dx last October with RRMS, I inject copaxone everyday and have had IV steroids three times over the last year.

 

I have had my current relapse going on for about 10 weeks now and am struggling to get back into work, I was just wondering if anyone has experienced a swelling of the back of the neck along with sore eyes when you move them and extreme tiredness? The swelling keeps coming and going and no one seems to know what it is??

 

I also experienced the MS hug ouch!!!!

 

I have tried contacting my MS nurse who is always on annual leave and never available I have seem my GP god knows how many times (the receptionist now knows my name how embarassing) ha ha so I seem to be at an impass and quite frustrated am worried the new symptoms and the prolonged relapse means there is something wrong or there are new lesions somewhere??

 

Any thoughts on this guys would be of help

 

Take care

 

Gem

 

x

[Hezza]

Hi and Gems,

This sounds so frustrating for you especially not being able to get your MS Nurse's view on it.

 

If you're already in or recovering from a relapse then perhaps the fatigue may be part and parcel of that? You say you're trying to get back to work so if you're pushing yourself maybe your body is saying "slow down, not yet".

I have had pain on moving my eyes before when I have had optic neuritis. It occasionally returns and is usually a good sign for me to take it a wee bit easier. We're all different though so it's definitely something I'd suggest you ask your Dr or Nurse about.

I have no idea about swelling I've never heard of it in connection with MS so all I can advise is that when you finally get hold of your nurse, or see your GP next, that you ask.

 

Is there only one MS nurse for your area? It may be worth calling the Neuro department and explaining that you have some questions to see if they can put you in touch with someone else in the absence of your nurse?

 

I'm sure some of the others will be along with their own words of wisdom soon.

 

[lisa]

Hi gems

 

I to have rrms an I have never had any swelling but when my ms is active my eyes do hurt when I move them so your probably not over your relapse yet an need to try an take things steady you might not be ready for work yet you probably need a bit more time off to get over this relapse properly ! !

 

Lisa x

[Christina]

Hi and Gems

 

 

I get sore neck glands after steroids for a few days and like you I've had lots of steroids this year. Maybe it's that causing it? Or could it be a side effect of Copaxone? Either way, it sounds like you need to get in touch with your nurse. Is there no way you can leave a message and ask her to call back?

 

Chris x

Edited 8 Oct 2011, 10:38 am by Christina

[Gems]

Thanks a lot everyone for all your replies, I think I will ring my MS nurse on monday and see what she has to say hopefully will get some answers as to what is wrong, still shaky on the inside and have a sore eye and a headache but hey nothing chocolate can't cure ha ha

 

Hope your all well

 

x

[mustard]

Hey,

My circumstances are actually really rather similar to yours (I was dx'd last December, am on copaxone, and have had steroids 3 times in the last 12months, although orally). It is interesting you say about a swollen neck, whereabouts is the swelling? I have some issues with pain & weird feelings in the upper spine area, my boyfriend often gives me shoulder massages, and he has said a few times the spine part of my neck feels & looks swollen. It isn't something I've ever read about being a symptom of MS, but then there are a few things that the neuro tells me are nothing to do with MS but I swear blind that they are because I do remember what it is like not to have MS and I know my body and what is 'normal' and what isn't!

Anyway, I am rambling. I also get eye pain too, often lighting can have an impact on it, like recently I was using only fairy lights in the evenings as a bulb had gone on the normal lamp, and I was getting really severe eye pain, it took me over a week to work out what it was, but I changed the lighting and now the pain is gone! Also fluorescent lights in the office are bad for it too.

 

Have you had any steroids for this relapse? If not, and if you can't get hold of the MS nurse, it might be worth ringing the neurologist and trying to get an appt with them instead?

Relapses can really vary in length, so try not to worry as it isn't indicative of how well you will eventually recover. I recently had a relapse that had been grumbling away for a couple of months until I finally gave in and had some steroids, and now I feel great, no lasting symptoms at all. Having a relapse/attack/episode, whatever you want to call it, does mean there are new lesions as far as I understand, but it doesn't necessarily mean that they will always be there and that they won't heal up and you can't return to how things were.

 

Take care,

Mustard x

[Gems]

I have swelling on the back of neck and the weird feeling from it spreads to my shoulders, the swelling starts at the base of my skull and travels to the bottom of my neck, I know what you mean about feeling "normal" and I definitely dont feel it at the moment!

 

I have had steroids about 2-3 weeks ago but am still experiencing crippling nausea and eye pain, my next appontment with neuro is 4th November

 

I was also wondering can you build up a resistance to copaxne?

 

Thanks for your input it helps to know were not alone in feeling like this

 

x

[Christina]

Not sure how long you've been on Copaxone, it may be early days but if you've been on it a while and still needing frequent steroids for relapses, I think it could be time for a chat with your neuro about whether it's working for you.

 

Chris x

[Frecks]

Hi Gem,

 

Sorry to hear you are going through a rough time at the moment.

 

If you can't get hold of your own MS nurse have you tried contacting your local MS Society branch. I did this when I was first diagnosed in Jan 2010. Through them I received conselliing free which really helped and also if needed to I could have been put in touch with a Dr who works in conjunction with them. You may find they can put you in touch with another MS nurse near to you? When my MS nurse isn't going to be around she will always leave details of who to contact if people have problems on her answer phone. If you really are struggling to get hold of her and she isn't getting back to you then perhaps you should call up PALS (Patient Advice and Liaison Service) although they can't help with the MS they can see why you are finding it hard to get hold of your nurse when you need her and try and sort things out for you. Possibly could help?

 

As for your relapse I would try not to worry about what lesions you have and haven't got. It's just going to get you more stressed, well it would me anyhow. It's funny I have noticed people talk about lesions a lot on here. Apart from when I first had my MRI back in 2006 and when I got my diagnosis in 2010 I never think about the lesions I've got. I know they are there but even when I have had problems I have never given them much thought. It may be because the Consultants I have seen haven't really focused on them. I know I have multiple lesions but on the other hand although I have had relapses and problems at times. I have always fully recovered and thankfully not been left with any permanent disabilities. I have only ever had one MRI as my consultant didn't feel there was a clinical need for me to have another one during my previous relapses and it would only cause me more stress if I saw that I had more lesions. I would have to agree as unless there was a definite need for an MRI I don't want another one cuz if it shows more lesions it would scare me.

 

I was off sick for 9weeks at the beginning of the year and it really knocked my confidence and I was stressed and worried at the time that I wouldn't be able to get back to my job (work as a Practice Nurse in a GP surgery). It's now nearly 8 months since I've been back and I can't believe I was off for that time. When I was off sick I felt like things were never going to get back to normal but they did (more or less). Being off work is a stressful thing. I saw a Councillor when I was off sick which I found really helpful.

 

Haven't experienced similar symptoms to yours (except for the extreme tiredness when I was having a relapse) and typing this I have just remembered during my last relapse I did have sore eyes, it was only when I touched them they hurt for example when washing my face or removing make up.

 

 

Not sure if any of that is helpful, sorry for the long waffle

 

I hope things get better for you soon

 

Take care

 

Kate xx