MS and work???

Brain and nerves
1

Hi everyone,

iv had MS symptoms for about 20 years but hate going to the doctors so just put them to the back of my mind but in February it was taken out of my hands and I was hospitalised and after an MRI scan and Lumber puncture it was diagnosed.

its been 4 months now and I'm still waiting for my appointment next month with my neurologist so I'm on no medication yet. I feel completely different to how I did before the episode having many symptoms every day but the worst thing is the fatigue, I've been tired as long as I can remember but this is completely different and waking up exhausted every day is worrying that I'm ever going to get some energy levels back ever?

Before the episode I had my own mobile hairdressing business, really busy! 

Im wondering now if il ever be able to do hairdressing again?

i wondered if any of you are able to work as you have always done?

Sarah

2

Hello Sarah,

I felt completely different after my diagnosis as well.

All is not lost, my fatigue was through the roof.  It was Modafinil that rescued me.  I honestly couldn't live without it.  Work, traveling to and from work, playing with my son, weekends.  You know what I mean.

Best of luck getting it, I don't want to spam too many links, you can check my previous post, but I get mine from mod4all.

There are other options, Amantadine, tri-cyclic antidepressants, but they really messed with my head.

4-aminopyridine, as well, has a mild stimulant effect.  Check my other posts for more info about spasticity and fatigue (and genuine solutions).

Take care.

Jem

3

Hi Sarah sorry to hear the way your feeling. Unfortunately I wasn't able to continue to work, the job I had was physically demanding and I couldn't cope with the day to day plus I had a sixty mile round trip for my commute. The company I worked for did try and find me alternative employment but nothing that was really suitable. I know a few people with MS some work some don't. It does depend on the job. However I did read somewhere that statistically people with MS are unemployed.

On the plus side you are self employed, know your own body and know to a certain extent what you are capable of.

Sorry I couldn't be more positive but I can only go by my own experience. I wish you well for the future and hope things go the way you want

4

Hi Jem,

Thanks, I will make a note of them and have a look at your blogs.

i just hope my neurologist understands, the neurologist is saw for my diagnosis didn't want to listen to me and said I am not an MS specialist I will refer you on, doesn't give you much confidence when for what will be 5 months I've had no support?

Apart from on here of course 😉

Sarah

5

Hi Sarah,

Last year I was diagnosed with Optic Neuritis after losing sight in one eye. I had a few MRI's which showed a few lesions on my brain and had IV steroids to bring back my vision. After this I was also checked and found to have an under active thyroid gland. I am waiting to have a lumber puncture, they did suggest one at the time but I didn't want it, but have still not been diagnosed 100%. I now have regular numbness in my hands and feet and went through a period shortly after the neuritis of the worst fatigue I have ever felt. I own a hair and beauty salon and have had to cut back my hours and avoid stress as much

as possible, this seems to make me feel worse, but am back to doing the job I love. I hope that as it did with me your fatigue lessens and you are able to work again you may have to just do a little less. 😊

6

Hi Adrian,

Thanks for your reply, yes the self employment has been great but Hairdressing is very physically demanding. I am on employment and support allowance and in the support group with that which means if I do feel that I can't continue with hairdressing the government will give me training in a less physically demanding job which is amazing but with what you said about employment I can imagine employers do not want to employ people with MS?

i don't know, wel see? 

Thanks again

Sarah

7

Hi Vicky,

I hope so too, thanks, time will tell I suppose.

do you know when you are having your Lumber puncture?

😊

8

Hi Sarah,

I have an appointment with my neurologist August so probably shortly after that. It would be good to get a diagnosis as Under active thyroid has similar symptoms to MS. As you well know our jobs can be quite physical so takin it easy in the meantime might be good, I have found it helped with me. Wishing you well.

9

You too Vicky and let us know how you get on 😀

10

Hi Sarah

I just wanted to say that I was impressed with how you managed to ignore the symptoms for so long! When I get them I'm in a state of mass panic straight away!

11

Hi Caroline,

i was was scared to death, honestly but the symptoms came and went away so when they were gone I pushed it to the back of my mind 😣😊

12

That's what I do! What symptoms did you have and what was the symptom that hospitalised you? My neuro keeps telling me mine are a combination on stress and too much alcohol... At most I used to drink three bottles of wine per week. Sometimes nothing at all, so I do find that hard to bieve but it's better than the alternative!!

13

They always blame it on the alcohol eh, wheel it started with numb patches on the left side of my face then my face slowly paralysed on the left, my mouth was all crooked when I spoke and my left hand started to go numb, I went to the doctors and she sent me straight to A&E thinking I'd had a stroke or maybe a brain tumour! I was petrified! After the MRI they said MS straight away and I was relieved, I had white matter around my brain and inflammation which needed intravenous steroids, was a roller coaster Caroline. 

Do you have MS?

14

The more time goes on the more I'm secretly convinced! What symptoms did the whole thing start with 20 years ago...??

15

Well my arms went tingly and numb when I lowered my head, a big sign apparently only lasting a month then over the years brightness in my left eye numb legs below the knee, numb hands, pins and needles, burning feet ect 

what symptoms do you have? 

16

A lot of sensory ones, prickling burning etc plus random pain in arms... I get funny legs below the knee too, if I touch them I can feel them but they feel like they are throbbing/pulsating... It's hard to describe... I'm kind of waiting for something big to happen that they can't blame on stress etc... How are you doing now? Are you taking any meds to slow things down??

17

My appointment is not till next month to see my actual neurologist so been suffering since February, my symptoms are every day now and the fatigue is the worst.

its terrible that you have to wait for something big to happen before they listen.

Sarah

18

Hope the appointment goes well... Are you on the UK?

19

Yes hence the long appointment waiting time! in Nottinghamshire are you in the UK? 

20

Me too... I'm in Warwickshire... I paid £180 to go private... Was even more impressed when he said stress and wine were the culprits after paying... Are you staying positive? I'm very grumpy with my hubby, poor thing!