MS in all its glory

whatever76 · 12-05-2021 10:54AM

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 · 12-05-2021 12:51PM

[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.

12-05-2021 01:08PM

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 · 12-05-2021 03:38PM

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 · 12-05-2021 05:06PM

[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 · 12-05-2021 06:05PM

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 · 12-05-2021 06:11PM

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

adam88 · 12-05-2021 11:47PM

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 · 13-05-2021 11:36PM

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 · 14-05-2021 08:53AM

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 · 14-05-2021 03:40PM

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 · 14-05-2021 04:22PM

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 · 18-05-2021 04:05PM

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 · 18-05-2021 04:50PM

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 · 20-05-2021 11:31AM

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 · 20-05-2021 11:33AM

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 · 20-05-2021 11:41AM

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

cj maxx · 22-05-2021 08:36PM

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

byhookorbycrook · 23-05-2021 05:12PM

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 · 23-05-2021 05:59PM

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 · 23-05-2021 11:45PM

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 · 25-05-2021 01:17PM

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 · 25-05-2021 03:42PM

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 · 26-05-2021 10:14AM

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 · 26-05-2021 12:52PM

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

Nigel Fairservice · 26-05-2021 07:29PM

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.

I looked at the priority list when it first came out and it prioritised MS patients on certain medications. My medication wasn't listed so didn't think I could get vaccinated before my age cohort. The HSE line for priority seemed to be don't call us, we'll call you. I didn't do anything further about it either, just took it that I'd have to wait until they reached 35-39 age group. The neurologist was a bit surprised I wasn't vaccinated already. At least now I'll hopefully get Pfizer or Moderna.

byhookorbycrook · 26-05-2021 07:59PM

Nigel Fairservice wrote: »

I looked at the priority list when it first came out and it prioritised MS patients on certain medications. My medication wasn't listed so didn't think I could get vaccinated before my age cohort. The HSE line for priority seemed to be don't call us, we'll call you. I didn't do anything further about it either, just took it that I'd have to wait until they reached 35-39 age group. The neurologist was a but surprised I wasn't vaccinated already. At least now I'll hopefully get Pfizer or Moderna.

That changed again and many GPS are now doing any patients with chronic conditions by now . You shouldn’t have to wait for your age cohort.

Lollipops23 · 27-05-2021 11:18AM

Nigel Fairservice wrote: »

I looked at the priority list when it first came out and it prioritised MS patients on certain medications. My medication wasn't listed so didn't think I could get vaccinated before my age cohort. The HSE line for priority seemed to be don't call us, we'll call you. I didn't do anything further about it either, just took it that I'd have to wait until they reached 35-39 age group. The neurologist was a bit surprised I wasn't vaccinated already. At least now I'll hopefully get Pfizer or Moderna.

My meds weren't listed either but I still got done well before my age cohort.

Ring your GP, that's how I got it!

whatever76 · 27-05-2021 11:37AM

byhookorbycrook wrote: »

That changed again and many GPS are now doing any patients with chronic conditions by now . You shouldn’t have to wait for your age cohort.

Im 44 and on Gilyenia and got Moderna 2/3 weeks back got a text saying I was referred to by hospital as high risk and to confirm if I wished to get vaccine etc. So maybe try MS nurse as well ?

Nigel Fairservice · 27-05-2021 01:55PM

I called our GP this morning about my sister who is also cohort 7. She has an intellectual disability and wouldn't be able to organise a vaccine for herself. I didn't mention my own vaccine because I thought the hospital were going to take care if it. GP rang me back and and booked the two of us in. Very surprised.

MS in all its glory

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