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Sensory ms - can fatigue be a symptom

Hi All

I am looking for a bit of advice. I have been told my MS is sensory only. I don’t really have relapses or remmissons - just a gradual worsenig of symptoms. Balance, sleep proplems, numbness / cold / pain in hands and feet. I know I don’t have fatigue in a way that would be described an overwhelming exhaustion and the inability to carry out tasks. What does seem to happen is that if I am active one day whether through excercise or a day out I am fit for nothing the next day. This can be even if I spend a lot of time on my feet. I also just seem to get run down and my symtoms will feel worse and I just loose the motivation to keep trying. I am luckly that my employer is flexible and allows me to take holidays at short notice which I am doing increasingly often. Is this just psychological in that I could be thinking myself overtired? Or can it be a form of fatigue in that my MS mean my body cannot cope with the same amount of effort it used to? I know so little about this and I just don’t know if it is possible that I have fatigue as a symptom or if what i am experienceing is fatigue rather that being just plain tired like anyone else. Any input would be welcome. Thanks.

Hi Alba, there really isn’t a ‘type’ of MS that is sensory only. Some people with RRMS can have ‘sensory relapses’ (actually I’m not even sure of that as I don’t have RRMS… someone please confirm?)

Some people with any of the ‘types’ of MS have more sensory symptoms than anything else, and I assume this is why a neuro has told you that you have ‘sensory MS’… but, I’m sorry to tell you, there is absolutely no way of knowing if it will remain as sensory symptoms only.

Fatigue is a symptom that most MSers get, to a greater or lesser degree. So no, it is NOT psychological. You have MS fatigue and what you describe seems fairly typical. You spend a day doing something and the next day you’re good for nothing. That is MS fatigue. Yes some people get it worse and are very limited by their fatigue but many many people have what you describe.

Here is the link to ‘what is MS’ from this website. You will find it useful, esp the ‘types of MS’.

http://www.mssociety.org.uk/what-is-ms

Also read the symptoms bit, esp fatigue.

Hope this helps and do come back and ask more questions.

Just one other thing. Neurologists will quite often say that someone has ‘sensory’ or ‘mild’ MS… but they are not actual ‘types’ of MS and can often give you the impression that any other symptoms you have are either not connected to your MS or are ‘all in the mind’.

This is not so. The symptoms you describe, along with fatigue, are very MS.

Hope this helps.

Pat x

Hi Alba,

First off, there is no such diagnosis as “sensory MS”, so what you’ve been told is rather confusing and misleading. At most, all it means is that your symptoms so far have been sensory, and not disabling. That’s good, of course - nobody wants disabling symptoms. But it doesn’t mean you have a separate sub-type of MS, or that your symptoms will always be sensory, and that you won’t have any other symptoms - such as fatigue.

Although MS fatigue can be overwhelming, the fact it isn’t for you doesn’t mean you’re imagining yourself tired, or that it has nothing to do with your illness. I feel quite sad that you’ve been left to struggle with the belief your fatigue might be psychological, because you don’t have “the right type of MS” for this to really be a problem.

Any and all types of MS can and do cause fatigue - and indeed, many people with MS rate it as their single biggest problem - above measurable disability!

So please don’t think that you haven’t got “proper” MS, and therefore that you must be imagining yourself tired. MS is MS. Being spared pronounced disability doesn’t mean you should be feeling just fine, and won’t know you’re ill.

Do you have an MS nurse, or anyone you can speak to about this? Some people take drugs successfully for fatigue, although I have to say I’ve never been offered any, despite wasting nearly every afternoon asleep, which I find frustrating in the extreme.

Tina

x

I have a lot of sensory symptoms which feel worse the more I do, I can’t do what I usedt to without feeling totally wiped out. I would say you have fatigue just listen to your body, all of my sensory symptoms go ballistic if im having,a heavy day, its something you get used to in time and realise that ocan’t do what you used to. Its good you have a understanding employer.

To repeat the good stuff posted above, here’s a quote from the document on MS posted by Welshboy yesterday

“For example, pain, fatigue, and memory impairment are often among the earliest manifestations of the disease, yet they were virtually unrecognized as symptoms for many years. These symptoms are prevalent, troubling, and yet correlate only weakly, if at all, with neuropathology as revealed by current neuroimaging techniques.”

For Tina, I have been offered Modafinil because I was sleeping so much in the day. I have heard good reports about it from other people with MS. I didn’t start on it in the end because I began Fampyra and this seemed to correct the sleeping problem. I think your GP can prescribe Modafinil.

Agree with all thats been said already. You sound just like me. I used to think I was just a naturally lazy person as if did housework one day was really tired next day. This has been going on for years before my dx. Have had episodes when it gets really bad tho as in couldn’t lift a 2nd spoon of cereal felt sooooooooo heavy,feet nailed to ground feeling,thigh feel like wrapped up in cling film or such!! On the whole the ‘fatigue’ is always just there. Been bad lately no motivation at all as too much effort!

I am on Amantadine for fatigue(been 5 yrs on it now) but don’t think it works as well as it used to.

Thanks to all those who replied. I do feel a lot better mentally. I was worried that I was making myself tired. I was in touch with my MS nurse who just said cold limbs were dificult to treat and that a rest was a good idea - that was a great help!!! I don’t go onto this forum ofter but when I have it is very worthwhile and and makes a real difference. Thanks again guys x