Forum

Frustration

Dont know if this counts as newly diagnosed but i was told that i had MS in July 2011 . it started with not being able to move my left leg and arm and when i could the pain in the arm was very bad, since then i have had problems with my eyes . colour blindness with a netting going across one eye and pain behind another i have also suffered from pain in both legs not being able to rest them. on top of this i am suffering from fatigue and short term memory loss. i have been given daily injections for the MS . I feel so angry not only because of what i have now got but by the medical people who will not commit to saying the symptoms are connected to the MS

does anyone else have this problem or has anyone else had this problem and how did they overcome it please

thanks

Hi Maureen, and welcome! I don’t think there’s any hard and fast rule about how new counts as “newly diagnosed”. And even if there was, you don’t get banned from posting in this section because you are no longer “new”. I was diagnosed more than a year ago, and still pop in, and a few of the regulars loads longer than that! It may help you to have a look at the “What is MS?” section of this site, up at the top left. Yep, I know you’ve probably figured out “what it is” by now - at least to some extent. Nothing’s a faster teacher than having the damn thing, is it? But there is a section on signs and symptoms, where you can read about problems that are common (but don’t panic - very few people have ALL of them, and certainly not all at once). You’ll see that fatigue is right up there as one of the most common symptoms people report. Indeed, many rate it as their most severe symptom. Although it’s not really understood exactly how and why MS causes fatigue, so that may be one of the reasons it’s hard to link it conclusively. There’s little doubt MS does cause fatigue in it’s own right, but fatigue could also be due to secondary issues, such as the stress of a diagnosis, poor quality sleep, due to pain or discomfort, or needing to get up in the night, etc. Many people also report problems with memory and concentration. Again, this could be directly caused by the MS itself, affecting parts of the brain responsible for this. But it might also be because you are distracted (with worry), or not getting a good night’s sleep. When I was first diagnosed, I used to find I only ever forgot small things, but NOT the big ones, which suggested my memory was still working, but that I was operating some kind of filter, to screen out non-essential stuff, and avoid overload. It’s a very stressful time, and I think you can only deal with so much at once, so there has to be some kind of priority system. Low priority stuff used to just get dumped. A year on, I don’t think I’m quite as absent minded as I was, so I think a lot of it must have been stress and shock, rather than the direct effects of MS. Another reason medics may be reluctant to commit to the cause, because many symptoms of MS can also be caused by stress. So in someone who’s just been told the news, who’s to know which it is? You can certainly ask your doctor or MS nurse for help with fatigue, as there are drugs that might help - although I haven’t tried them. If you find the cognitive issues are really bothering you, and don’t seem to be just the temporary effects of stress, you could also ask for a referral to a neuro-psychologist, who should be able to assess what issues you are having, and may be able to recommend some tips and techniques to help. Hope this helps! Don’t feel scared to post on Everyday Living, as there tends to be a wider body of experience on there, of people who have had MS for longer, and tried different things. Tina

Hi Maureen and welcome

Firstly this site is a fantastic source of support and information and you can wander across the different forums as and when you want. As Tina has already said there are lots of us that flit about too, so there is always someone around whenever and wherever you decide to make a post.

MS is one of those illnesses that not only varies from person to person but also for each of us as well. Some days are better than others and some symptoms may be more bothersome than others. There are lots of different meds available to help with your symptoms so sometimes it can take a while to find the right one for you at the right dose, but it’s definitely worth persuing as they can make a big difference as to how you feel on a day to day basis.

I’m on copaxone too - the daily injection. DMD’s aren’t designed to make you ‘feel better’ as such, they’re more of a long term treatment, which is why it’s important to talk to your ms nurse or neuro about the persistent symptoms that you have. Symptomatic issues can be helped with various medications.

Do you have an ms nurse? If not then it’s worthwhile finding out if there is one attached to your neurology department because they’re there to offer you lots of support and advice and can open doors to other services. Mine is worth her weight in gold and I see her on a regular basis - although I know this does vary across the country.

The other thing is knowledge. From this site and also the ms trust website you can download booklets and information on all things ms related ranging from what ms is to things like financial matters and work issues. Or you can order them and have them delivered to your door. Either way I’m sure you’ll find them helpful. The ms trust have a section on their website called stayingsmart - which offers tips for cognitive and memory issues which you may want to check out too.

I’d definitely get your eyes checked out if you’re still having problems with them - it could be optic neuritis. Give your neuro’s secretary a call (or your nurse) and tell them what you’ve just told us. If you’re having a relapse then sometimes they suggest steroids. I’ve had these twice - oral ones and iv steroids. They can help to speed up the recovery time of a relapse. Of course it’s up to you whether you accept them if they are offered but either way I wouldn’t leave things to chance when it comes to the peepers - it’s not worth it. I’ve had ON twice - I have it at the moment

So I guess really what I’m trying to say is that there is help out there and if the hospital isn’t forthcoming with it then force the issue. You can find out from here (this site) or the ms trust whether there is an ms nurse service available in your area, chase up your neuro for some help with meds to help with your fatigue if you’re finding it a struggle - lots of us take them. I’m on modafinil myself. I’m also on pregabalin and clonazepam for other symptoms and take vitamin D3, the vitamin b complex and multivitamins too.

Remember we’re always here if you need us

Good luck

Debbie xx

Hi Maureen, and welcome to the site

It sounds like you have been rather abandoned by your MS team

There is a horrible tendency for neuros to give the diagnosis, order the meds, and then shove people out the door to cope on their own

Do you have an MS nurse? If you don’t, then please either ask your GP to get you the contact details or phone the neurologist’s secretary and ask her/him. The MS nurse should be your first contact when you have a new symptom or when you are struggling with something and need help. Tbh, some of them are pretty hard to get hold of, but that’s where things like this site come in - it’s often quicker to get answers and reassurrence on here than from the nurse!

As the others have said, one of the things that I find to be my greatest ally in dealing with the MS medics is knowledge. Knowing what is going on and what meds or treatments might help BEFORE I contact them means that I get taken more seriously. It especially helps with my GPs. Like most GPs, they know very very little about MS and neurology in general. So I need to know more than them - so I can tell them what to do.

There is no need to suffer with pain: there are loads of meds available to help both muscular and neuropathic pain. There are also one or two meds available for fatigue (e.g. amantadine). There are also a lot of things you can do to help fatigue (like exercise, better planning, etc). You also may find that your memory problems get a bit better if you manage to improve your fatigue, but if they don’t, you can ask for a referral to a neuropsychologist - they work with people with these kind of problems and will be able to assess & advise you.

If your eye problems are new, you might benefit from steroids. They won’t change the outcome, but they might speed up the time to recovery.

All your symptoms sound typical of MS. If your current medics won’t or can’t help you with them, perhaps you should consider finding better medics?

I hope you can get things sorted out soon.

Karen x

Hi. I have a question that I hope you don’t mind answering. It didn’t occur to me until the other day that I may have ms, I’ve had odd things happen over the years but never really thought much of it as they have always got better, there have been 3 very scary episodes but again they improved, the first was vertigo, my world spun for a week and I couldn’t move, if I did I’d fall to the floor, the second was when my face became completely paralysed, this only lasted a few minutes and the third was when I completely lost my words, I just couldn’t speak, I could move my mouth but nothing came out, I also had bright lights in my eyes. The other things I’ve had over the years are shooting pains throughout my body, my foot often feels like it has glass in the sole, my arms, legs, hands go numb (only for a short time), I have lost feeling in my butt cheek and other downstairs area for days, blurred vision (often), double vision (often), slurred speech, confusion, I muddle my words, the last couple of weeks I’ve had aches first in my wrist then in my knees and now my right hand feels slight weak, I fumble abit when trying to pick up things, write, wash up etc. Sure there is more but like I said this has all happened over about a 9 year period. I now feel silly for not seeing a doctor before now but had never put all my symptoms together and because at times they are minor or just abit annoying I didn’t feel the need to mention them. So my question is, Can some symptoms of MS be mild or is it always quite severe? Also, Can MS symptoms come and go quickly? Some of the things I’ve mentioned last days or weeks but some only last minutes or hours. I have seen a doctor now as my slurred speech and muddling of my words was getting embarrassing.

Thank you so much for reading this. Xxx

Hi i have secondary ms and am going to see my GP on Tuesday i expect he will offer me steroids. Has anyone had this for Secondary MS. I was given this when i had remitting ms but now its moved on wondering ig steroids will help.