MS in all its glory

Lollipops23

Deleted User wrote: »

Can I ask(anyone), when did you know something really wasn't right? What were the first signs?

Thanks

I was living abroad and my bed was rubbish- I assumed the numbness in my right hand was down to that. I lived with it for about 6 months before finally going to the doc (I'd moved back to Ireland). Was sent for an MRI and the rest is history!

Like others said, lots of stuff has since come to the fore as being cause by MS over the years, I just didn't put 2+2 together!

Nigel Fairservice

Nigel Fairservice wrote: »

I went to bed one night and when I woke up the next morning the right hand side of my body stopped working properly. The first things I noticed was when I tried to get dressed. I didn't have the strength in my right hand to fasten the buttons on my jeans or my shirt. I was dragging my right leg when I walked, I couldn't hold a cup without my right hand shaking and feeling I was going to drop it, I couldn't hit the correct key on a keyboard with my right hand when typing but my left hand was fine. My mother thought I was after having a stroke.

Like whatever76 said looking back I noticed other things that I wouldn't have connected to MS at all at the time, mainly because I didn't know much about it. I imagine that is the case for a lot of people with MS. I was constantly urinating and had no tolerance to heat. After showering I always felt like I wanted to tear my skin off because of an intense itch that no amount of scratching would help. I couldn't/can't really cope very well in hot weather either. These things on their own never would have made me think of MS. It was only after something more serious happened to me like above that MS was mentioned. I think diagnosis at times isn't very straightforward. My diagnosis took a year and a half.

Do you still manage to romp with your school chums in the fens and spinneys?



My aunt(my fathers sister) had MS and my sister was diagnosed with it a couple of years ago. Apparently, Scotland has the highest incidences of MS in the world. My father is Scottish

Recently I've gotten an intermittent sensation that my right leg is falling or sliding. I grab something to steady myself and lookdown and see that my foot hasn't actually moved. I've also had pins and needles in my left hand for 2 days which seems unusual.

My ex-girlfriend told me my level of fatigue was not normal and I should get my thyroid checked out.

I collapsed last March and got an MRI done in an NHS hospital but they didn't see anything, however I don't know were they looking for signs of MS or was it just part of their process. In the end, they suggested arrhythmia of the heart caused the collapse.

Should I go to my GP and insist an MRI?

Lollipops23

Deleted User wrote: »

My aunt(my fathers sister) had MS and my sister was diagnosed with it a couple of years ago. Apparently, Scotland has the highest incidences of MS in the world. My father is Scottish


Should I go to my GP and insist an MRI?

My aunt and grandmother (same side) both had it too. It's not hereditary but some of us are more genetically prone to it than others.

I would go to the GP and explain everything you've said here- don't let them fob you off.

whatever76

Deleted User wrote: »

Do you still manage to romp with your school chums in the fens and spinneys?



My aunt(my fathers sister) had MS and my sister was diagnosed with it a couple of years ago. Apparently, Scotland has the highest incidences of MS in the world. My father is Scottish

Recently I've gotten an intermittent sensation that my right leg is falling or sliding. I grab something to steady myself and lookdown and see that my foot hasn't actually moved. I've also had pins and needles in my left hand for 2 days which seems unusual.

My ex-girlfriend told me my level of fatigue was not normal and I should get my thyroid checked out.

I collapsed last March and got an MRI done in an NHS hospital but they didn't see anything, however I don't know were they looking for signs of MS or was it just part of their process. In the end, they suggested arrhythmia of the heart caused the collapse.

Should I go to my GP and insist an MRI?

I would chat to GP and see if make sense to be referred to a Neuro consultant maybe? There is a process to getting diagnosis and being neuro related its slow with lots of tests and ruling other things out as well . For me I had a C and T spine MRI along with brain scan and then Lumbar puncture to get final diagnoses . BTW my older sister was diagnosed nearly 20 years ago as well so its not unusual for it to be in the family. Best of luck !

Carrie6OD

[Deleted User] wrote: »

Do you still manage to romp with your school chums in the fens and spinneys?



My aunt(my fathers sister) had MS and my sister was diagnosed with it a couple of years ago. Apparently, Scotland has the highest incidences of MS in the world. My father is Scottish

Recently I've gotten an intermittent sensation that my right leg is falling or sliding. I grab something to steady myself and lookdown and see that my foot hasn't actually moved. I've also had pins and needles in my left hand for 2 days which seems unusual.

My ex-girlfriend told me my level of fatigue was not normal and I should get my thyroid checked out.

I collapsed last March and got an MRI done in an NHS hospital but they didn't see anything, however I don't know were they looking for signs of MS or was it just part of their process. In the end, they suggested arrhythmia of the heart caused the collapse.

Should I go to my GP and insist an MRI?

My only symptom was foot drop and balance issues. I had loads of MRIs and still nothing conclusive until the lumbar puncture. So sometimes the MRI just doesn’t give the information to diagnose. I would ask for referral to Neurologist just in case.

Carrie6OD

Carrie6OD wrote: »

My only symptom was foot drop and balance issues. I had loads of MRIs and still nothing conclusive until the lumbar puncture. So sometimes the MRI just doesn’t give the information to diagnose. I would ask for referral to Neurologist just in case.

How would you describe foot drop?

byhookorbycrook

Deleted User wrote: »

How would you describe foot drop?

When your foot doesn't lift when you ask it to, is probably the simplest explanation, but it may be subtle , I only noticed that the toes of my left legs shoes were getting scuffed quite a lot. I have the odd fall now and again if I am very tired.

Carrie6OD

[Deleted User] wrote: »

How would you describe foot drop?

I would describe it as an absolute pain in the a*se! When I walk I trip over my feet and stumble. It’s due to neurological fatigue and demyelination. So I need to think about walking from A to B and where my feet are placed rather than just walking like everyone else. I feel like I’m wading through an uneven swamp at all times now. Tired legs, worsened by any kind of stress. But it’s my only MS symptom so far of my PPMS and I don’t use a walking aid although a walker would be very handy. I use my kids buggy as a walker now!

Nigel Fairservice

Deleted User wrote: »

Do you still manage to romp with your school chums in the fens and spinneys?



My aunt(my fathers sister) had MS and my sister was diagnosed with it a couple of years ago. Apparently, Scotland has the highest incidences of MS in the world. My father is Scottish

Recently I've gotten an intermittent sensation that my right leg is falling or sliding. I grab something to steady myself and lookdown and see that my foot hasn't actually moved. I've also had pins and needles in my left hand for 2 days which seems unusual.

My ex-girlfriend told me my level of fatigue was not normal and I should get my thyroid checked out.

I collapsed last March and got an MRI done in an NHS hospital but they didn't see anything, however I don't know were they looking for signs of MS or was it just part of their process. In the end, they suggested arrhythmia of the heart caused the collapse.

Should I go to my GP and insist an MRI?

I still manage the odd one :pac:

There's no history of neurological illness on either side of my family. I think if I had kids there would be a slight increased risk of them developing MS but nothing to be overly worried about.

One of the possible explanations as to why people develop MS is lack of vitamin D. MS is more prevalent the further away from the equator you go. It may explain why MS rates are higher in Ireland, Canada, Scotland etc. This idea isn't proven though.

My sister has an underactive thyroid and so did my mother. The level of fatigue they experienced seemed more extreme compared to my experiences of fatigue.

Some of the things you experienced could possibly be MS. Pins and needles is common. When it comes to MS though I think they have to rule a lot of things out first before they can say MS. Diagnosis can be protracted. My own diagnosis involved an evoked potentials test, a lumbar puncture and a few MRIs. My evoked potentials test and lumbar puncture were both normal. What led to the diagnosis was tracking changes in MRI scans over time. The whole thing took a year and a half. My diagnosis seems to have been the reverse of Carrie's experience so you can see it's not straight forward to diagnose. I suppose you can discuss your concerns with your GP and see if it's worth referring you to a neurologist.

whatever76

I know there is some much info/groups out there relating to MS which is great but it can be overwhelming and people have own preference but as only recently diagnosed I found the following Podcast really good that wanted to share to anyone new to MS journey - some really good subjects discussed - MS living well : Key info from MS experts ( Barry Singer MD) . The chat on Numbness & Pain was like it was talking about my case kinda weird but good to hear it as well

Loveinapril

[Deleted User] wrote: »

How would you describe foot drop?

For me it means my foot is heavy and a bit clumpy. When I went to a physio, she described it as my toes not having the power to bounce my foot back to the heal for walking properly so my foot sometimes kind of 'slaps' the ground. It is very elegant!!! It gets worse the more you walk, like someone else says, it is motor fatigue. It is such a hassle because I can be fine at the start of a walk but will be limping on the way back. I have a similar issue in my hand in that if I type or write for any length of time, it gets heavy and stops doing what I need it to.

Loveinapril

Carrie6OD wrote: »

I use my kids buggy as a walker now!

I am the same! I wonder what it will be like when my youngest is out of the buggy and I am expected to carry any number of bikes and scooters while 'running' after them.

adam88

Loveinapril wrote: »

For me it means my foot is heavy and a bit clumpy. When I went to a physio, she described it as my toes not having the power to bounce my foot back to the heal for walking properly so my foot sometimes kind of 'slaps' the ground. It is very elegant!!! It gets worse the more you walk, like someone else says, it is motor fatigue. It is such a hassle because I can be fine at the start of a walk but will be limping on the way back. I have a similar issue in my hand in that if I type or write for any length of time, it gets heavy and stops doing what I need it to.

I’m only after putting hand pain when writing for a bit down to my MS. There was me thinking it was fine to not having to write much since my college days. I’m lol at it now

byhookorbycrook

Vitamin D wise , it’s funny as I was very much an outdoor person all through my life in the days we didn’t use sun cream! And in later years , I spent a lot of time outdoors, coaching school football teams and horse riding , pre diagnosis . I still ride and garden but I’d absolutely recommend that all MS-ers check Vit D and B levels and supplement as needed . I also take Udo’s omega oils .

Lollipops23

byhookorbycrook wrote: »

Vitamin D wise , it’s funny as I was very much an outdoor person all through my life in the days we didn’t use sun cream! And in later years , I spent a lot of time outdoors, coaching school football teams and horse riding , pre diagnosis . I still ride and garden but I’d absolutely recommend that all MS-ers check Vit D and B levels and supplement as needed . I also take Udo’s omega oils .

I've bee taking Vit D and a B complex for a few years now and I have to say I feel the benefit.

Added bonus, my skin and hair have never been healthier lol!

MyAccount

byhookorbycrook wrote: »

Vitamin D wise , it’s funny as I was very much an outdoor person all through my life in the days we didn’t use sun cream! And in later years , I spent a lot of time outdoors, coaching school football teams and horse riding , pre diagnosis . I still ride and garden but I’d absolutely recommend that all MS-ers check Vit D and B levels and supplement as needed . I also take Udo’s omega oils .

I also take Vitamin D and a B12 supplement. I have regular blood tests, as Anemia seems to be always lurking in in the background, as well as to monitor potential nasty side effects from my MS medication (Plegridy). Just in case that frightens anyone, I’ve not had any significant side effects, and think that such monitoring is precautionary as the doctors like to watch it just in case.

If anything the regular testing is good overall as it helps catch other stuff early; in my case a mildly under active Thyroid was spotted and regulating that was very beneficial, as once that was sorted my fatigue / energy levels improved noticeably.

Carrie6OD

Loveinapril wrote: »

For me it means my foot is heavy and a bit clumpy. When I went to a physio, she described it as my toes not having the power to bounce my foot back to the heal for walking properly so my foot sometimes kind of 'slaps' the ground. It is very elegant!!! It gets worse the more you walk, like someone else says, it is motor fatigue. It is such a hassle because I can be fine at the start of a walk but will be limping on the way back. I have a similar issue in my hand in that if I type or write for any length of time, it gets heavy and stops doing what I need it to.

That is me exactly.

Carrie6OD

Does anyone attribute dental issues to MS? I have developed very sensitive teeth and dentist thinks it may be related but I’m slow to blame MS for everything

Lollipops23

Anyone else on Tysabri? I had my 4th infusion today and feel totally shattered after it. Hasn't happened before, wondering if it's related to the vaccine....

byhookorbycrook

Carrie6OD wrote: »

Does anyone attribute dental issues to MS? I have developed very sensitive teeth and dentist thinks it may be related but I’m slow to blame MS for everything

MS-ers can often have bruxism or even TMJ disorder. I have a kind of mouth guard that was made (at great expense) to help me from damaging my teeth. I would never have realised how much I was doing this at night until I got a temporary soft one and almost bit through it at night in less than a fortnight.


https://www.nhs.uk/conditions/teeth-grinding/https://www.mayoclinic.org/diseases-conditions/tmj/symptoms-causes/syc-20350941

byhookorbycrook

Lollipops23 wrote: »

Anyone else on Tysabri? I had my 4th infusion today and feel totally shattered after it. Hasn't happened before, wondering if it's related to the vaccine....

For the 1st 6 months of Tysabri, I was wiped out the day after . I also used to managing the day before, of and after as "easy days." When did you have your vaccine?

Lollipops23

Friday 7th, so long enough ago! I was wiped out after my infusion this week, but fine the next day!

cj maxx

Anyone else find that weather affects their walking ? With this changeable weather my walking is all over the place

byhookorbycrook

cj maxx wrote: »

Anyone else find that weather affects their walking ? With this changeable weather my walking is all over the place

Extremes usually hit us hard, but I find that "close" warm weather absolutely exhausts me.

Nigel Fairservice

byhookorbycrook wrote: »

Extremes usually hit us hard, but I find that "close" warm weather absolutely exhausts me.

I'm the same. Muggy weather wipes me out, I couldn't even face walking to the local shop. I find the colder it is the better able I am to function.

cj maxx

byhookorbycrook wrote: »

Extremes usually hit us hard, but I find that "close" warm weather absolutely exhausts me.

I dread late July/ August when the humidity kicks in, but we're a long way off that. I've noticed that changeable weather does me in. A few nice days , then cold and wet. My leg doesn't know what to do! Add in I ran out of baclofen

byhookorbycrook

cj maxx wrote: »

I dread late July/ August when the humidity kicks in, but we're a long way off that. I've noticed that changeable weather does me in. A few nice days , then cold and wet. My leg doesn't know what to do! Add in I ran out of baclofen

Feic that! I couldn't manage without it .:(

Nigel Fairservice

I had my neurologist appointment today. Was asked was I vaccinated and said I wasn't. They then asked me why I wasn't They said I should have been done weeks ago and that they'd put me on their list.

byhookorbycrook

A few fell between two stools, gps were told consultants would put people forward, consultants thought GPs were doing it. On the plus side, you are less likely to get AZ and more likely one of the far more effective ones.

MyAccount

byhookorbycrook wrote: »

A few fell between two stools, gps were told consultants would put people forward, consultants thought GPs were doing it. On the plus side, you are less likely to get AZ and more likely one of the far more effective ones.

Agreed - I had a similar experience - Neuro said it's the GP's job, and GP said it was the HSE's job - HSE said it was the Neuro's job, so went around in circles for a while, as everyone consistently adopted a "not my job stance" - after a becoming a bit of pest the GP agreed to do it - got my first shot 3 weeks ago, and my second dose is due this day next week - unfortunately I don't think we can assume anythin,g so just keep asking until you get when you (rightly) need