Anyone with MS or other neurological problems?

[Be More Pacific]

Sorry I am only replying to you now. I find it hard to find the words to respond to messages sometimes.

I still haven’t got my appointment through. I’ve been back to a&e twice over the last two weeks and have been sent home with no answers and told to just wait until I see neurology. This is even with noticeable left sided weakness. My legs are burning quite a lot and my twitching has increased. I’m also miserable and quite easily annoyed this week. I feel sorry for my husband and children. How are you doing?

That's ok

Sorry to hear you're struggling. I'm really loathe to ask this, because I really believe in the NHS, but is there any way you could afford to see a neurologist privately? I know when I was diagnosed, I would have been waiting months to see a neurologist and then another eighteen months to have an MRI scan if I hadn't been admitted when I went to A&E? I have no idea what timescales are like now.

The other thing about diagnosis is - well, it used to be - that they can't diagnose you until you have had two relapses at least a month apart (I think it was) although I believe that timescale was shortened to 24 hours. I don't know if that still applies though. I'd had two very clear relapses fifteen months apart - that and my MRI scan were enough to diagnose me. I didn't have to have a lumbar puncture thank God.

I'm doing alright thanks although I stupidly overdid it Sunday and Monday around the house and I am paying for it now. When will I ever learn? I have done literally nothing today.

In addition, we live in a strange house. It's my boyfriend's father's house (his former crash pad when he worked) and it is very small. From October to around now, it is freezing. Even putting the heating on only takes the edge off the cold. I'm not someone who really feels the cold (I have a lot of insulation ) but this house is cold. However, as soon as May comes, upstairs gets ridiculously hot. I've just been up there now and it is, quite frankly, disgusting! If makes me feel sick. It's been 27C here today. One day last year, it was 37C and I woke up in the middle of the night and thought I was being cooked alive In addition, my period has started (and is really heavy - sorry, TMI) so my body temperature is up and I've been having a few hot flushes as well.

It's all fun and games!

Have you managed to do any exercise? If so, how did you get on?

yeah it’s definitely covid causing the delays,
I’m sure I will be seen eventually. It’s just so hard to cope with the symptoms. Is it your eyeballs that appear to twitch? That’s quite a long time between appointments. It’s awful when professionals don’t understand or even try to understand how you feel. I will have a look into a group in my local area. I was planning on going private but the waiting list is back to 8 months again. It’s a bit concerning that your ms nurse is making mistakes. How are you coping during the pandemic? X

That's a pretty standard appointment time.

I would see my last MS nurse every six months. If I needed to speak to her urgently, I could call or e-mail and she would then try and see me in clinic within a couple of weeks if it's something she couldn't resolve over the phone/e-mail. She would sometimes get a neurologist to sit in with her because she couldn't book me an appointment directly with one - hospital politics or something Having an appointment with an actual neurologist is rare in my experience.

 

[Keikochan]

yeah it’s definitely covid causing the delays,
I’m sure I will be seen eventually. It’s just so hard to cope with the symptoms. Is it your eyeballs that appear to twitch? That’s quite a long time between appointments. It’s awful when professionals don’t understand or even try to understand how you feel. I will have a look into a group in my local area. I was planning on going private but the waiting list is back to 8 months again. It’s a bit concerning that your ms nurse is making mistakes. How are you coping during the pandemic? X

It sounds really weird when I say it but yeah I think it is my eyeball that twitches. It is when I look to the side, like when you try see what is to your side but you don't turn your head. Tbh I just turn around to look if I want to see anything now, like if someone comes through a door that is to my left or right. I hope that makes sense.
I'm sorry to say that I honestly think there isn't much they can do to actually get ride of the majority of the symptoms. If anything flares or I experience new symptoms I can contact the MS Nurse and depending on what is happening she might bring the appointment forward or I might go to my GP because maybe they could help...
Hopefully the covid will settle and the backlog that is happening will be processed well.
Thankfully I'm OK, it is honestly much the same as non pandemic. How are you coping?

 

[People-huv-tae-know]

Hi there,

Can I start by asking a few questions?

How old are you?
How old is/are your children? When did you have your daughter?
Do you work?
Any major stress or emotional upheaval in your life?

When you say you find it difficult to walk, can you describe that? Is your leg/foot dragging at all? Is your gait effected do you think? And can you describe the tightness/tenseness you feel?

The rib cage pain. Is it sharp say like when you turn over in bed? Does it maybe feel tight like you're being squeezed?

The burning pain when you're peeing. Are you having any issues with going to the loo but not being able to pee or just a few drops coming out? Or any accidents? For example, not getting the usual little urge messages until it's really late? Feeling like your bladder is full but then nothing happening?

Any issues with your vision at all?
How are you sleeping?
How are you with heat/hot baths/humidity Do any of those make you feel more tired?

If you read through my posts, does any of that sound like anything you're experiencing?

Thank you so much for taking the time to read and reply.

To answer your questions, I'm 34. I have three children aged 10, 5 and 23months. My daughter is the youngest and she was born in 2018. I've been a stay at home mum for the last 10 years. Regarding stress however, there has been a lot. My pregnancy with my daughter was fraught with fear because she was diagnosed with a very serious lung condition that meant she only had a 10% chance of life. When she was born she was whisked away immediately for intubation and life support. She spent 3 months in the neonatal unit and I lived at the hospital away from my sons to be with her. That same year I had to relive a lot of childhood trauma to the police. The person responsible was finally arrested and was set to appear before the high court this year but Covid has delayed that. My daughter spent 9 months in and out of hospital between 2018/2019 including Christmas because even catching a cold can cause severe breathing difficulties. So stress has been huge since 2018.

Re walking, I don't think my foot is dragging. My ankle often feels sore and weak. I feel a bit lopsided. My knee feels stiff and sore and the muscles in my calf and thigh feel tighter and stiffer. Walking sets off the lower back pain which in turn sets off my hip. Both ache and feel tighter in a muscular sense. This often stretches to my left abdomen and it will twinge and feel stretched too. A bit like mild cramps. Where my leg joins my body feels large and tight.

The ribcage pain almost feels like when during pregnancy a baby's foot might push against the wall of the stomach, it is uncomfortable rather than sharp. If I lie on my front I feel it too, either just below or under the bottom of my ribcage. It throbs a bit sometimes or feels a bit stretched at other times.

My pee doesn't usually burn. I don't have accidents but I do often feel like I need to go but only a few drops will come out, yet it feels like there must be more to come. If I squat to put things in a low drawer or cupboard, I get a stretched sensation and stabby pain inside my vagina. Since having children, if I sneeze or cough too much I'll have a tiny trickle but I have put that down to childbirth.

Vision I think is ok. I wear aspects, never needed them until I was 28. I think my vision has deteriorated a bit and I need new glasses but no blurring or double vision.

I sleep ok if not in pain but it can ages to drop off and I can only sleep FB later on my back with my head turned to the right or on my right side as everything on the feels like it tenses or seizes up.

I don't have baths, just showers but I feel heat helps, it does not make me sleepy. I often use hot water bottles to combat the aches and pains. My fingers and toes are often cold and I feel that m as kes the pain a bit worse.

Reading your posts, I don't think any of my symptoms match yours but there are some similarities regarding tingling and burning pain. Not knowing what it is is so frustrating, I feel a bit abandoned by the GP. I am desperate for answers, anything to point me in the right direction.

 

[louisana]

That's ok

Sorry to hear you're struggling. I'm really loathe to ask this, because I really believe in the NHS, but is there any way you could afford to see a neurologist privately? I know when I was diagnosed, I would have been waiting months to see a neurologist and then another eighteen months to have an MRI scan if I hadn't been admitted when I went to A&E? I have no idea what timescales are like now.

The other thing about diagnosis is - well, it used to be - that they can't diagnose you until you have had two relapses at least a month apart (I think it was) although I believe that timescale was shortened to 24 hours. I don't know if that still applies though. I'd had two very clear relapses fifteen months apart - that and my MRI scan were enough to diagnose me. I didn't have to have a lumbar puncture thank God.

I'm doing alright thanks although I stupidly overdid it Sunday and Monday around the house and I am paying for it now. When will I ever learn? I have done literally nothing today.

In addition, we live in a strange house. It's my boyfriend's father's house (his former crash pad when he worked) and it is very small. From October to around now, it is freezing. Even putting the heating on only takes the edge off the cold. I'm not someone who really feels the cold (I have a lot of insulation ) but this house is cold. However, as soon as May comes, upstairs gets ridiculously hot. I've just been up there now and it is, quite frankly, disgusting! If makes me feel sick. It's been 27C here today. One day last year, it was 37C and I woke up in the middle of the night and thought I was being cooked alive In addition, my period has started (and is really heavy - sorry, TMI) so my body temperature is up and I've been having a few hot flushes as well.

It's all fun and games!

Have you managed to do any exercise? If so, how did you get on?



That's a pretty standard appointment time.

I would see my last MS nurse every six months. If I needed to speak to her urgently, I could call or e-mail and she would then try and see me in clinic within a couple of weeks if it's something she couldn't resolve over the phone/e-mail. She would sometimes get a neurologist to sit in with her because she couldn't book me an appointment directly with one - hospital politics or something Having an appointment with an actual neurologist is rare in my experience.

I could definitely go private for an initial neurology appointment but it’s still an 8 month wait unfortunately. I don’t mind having to wait if I can just have some help to manage my symptoms.

I have been to a&e further two times since I last spoke with you. Unfortunately I have been unable to have anyone listen and just told to see a physiotherapist whenever rules are more relaxed.

You should definitely spend the next days resting after overdoing it. It’s so hard to cope with the warmer weather, does it stress you out? I found myself getting very flustered today with the heat and just couldn’t relax. I purchased a dyson fan last year and it really helps at night time, they are very pricey but I had a voucher so didn’t have to put much to it. Does the heat keep you awake at night?

I have managed to get out and do so exercise. It’s not helped my symptoms but it’s helping my mind which is great. The kids are able to used their scooters whilst I walk which has been lovely

Whenever my husband has cardiology appointments it’s usually with the nurse and he might see a Consultant every other year. It must be pretty common throughout the NHS. xx

It sounds really weird when I say it but yeah I think it is my eyeball that twitches. It is when I look to the side, like when you try see what is to your side but you don't turn your head. Tbh I just turn around to look if I want to see anything now, like if someone comes through a door that is to my left or right. I hope that makes sense.
I'm sorry to say that I honestly think there isn't much they can do to actually get ride of the majority of the symptoms. If anything flares or I experience new symptoms I can contact the MS Nurse and depending on what is happening she might bring the appointment forward or I might go to my GP because maybe they could help...
Hopefully the covid will settle and the backlog that is happening will be processed well.
Thankfully I'm OK, it is honestly much the same as non pandemic. How are you coping?

I have the twitching sensation in my eyeballs too. Mine is pretty random. I don’t notice any vision changes when it happens, do you? Yours seems like it must happen pretty regularly. Did it take you long to get a diagnosis? I’m coping pretty well too, I do have the odd bad day and today has been one of those. X

Thank you so much for taking the time to read and reply.

To answer your questions, I'm 34. I have three children aged 10, 5 and 23months. My daughter is the youngest and she was born in 2018. I've been a stay at home mum for the last 10 years. Regarding stress however, there has been a lot. My pregnancy with my daughter was fraught with fear because she was diagnosed with a very serious lung condition that meant she only had a 10% chance of life. When she was born she was whisked away immediately for intubation and life support. She spent 3 months in the neonatal unit and I lived at the hospital away from my sons to be with her. That same year I had to relive a lot of childhood trauma to the police. The person responsible was finally arrested and was set to appear before the high court this year but Covid has delayed that. My daughter spent 9 months in and out of hospital between 2018/2019 including Christmas because even catching a cold can cause severe breathing difficulties. So stress has been huge since 2018.

Re walking, I don't think my foot is dragging. My ankle often feels sore and weak. I feel a bit lopsided. My knee feels stiff and sore and the muscles in my calf and thigh feel tighter and stiffer. Walking sets off the lower back pain which in turn sets off my hip. Both ache and feel tighter in a muscular sense. This often stretches to my left abdomen and it will twinge and feel stretched too. A bit like mild cramps. Where my leg joins my body feels large and tight.

The ribcage pain almost feels like when during pregnancy a baby's foot might push against the wall of the stomach, it is uncomfortable rather than sharp. If I lie on my front I feel it too, either just below or under the bottom of my ribcage. It throbs a bit sometimes or feels a bit stretched at other times.

My pee doesn't usually burn. I don't have accidents but I do often feel like I need to go but only a few drops will come out, yet it feels like there must be more to come. If I squat to put things in a low drawer or cupboard, I get a stretched sensation and stabby pain inside my vagina. Since having children, if I sneeze or cough too much I'll have a tiny trickle but I have put that down to childbirth.

Vision I think is ok. I wear aspects, never needed them until I was 28. I think my vision has deteriorated a bit and I need new glasses but no blurring or double vision.

I sleep ok if not in pain but it can ages to drop off and I can only sleep FB later on my back with my head turned to the right or on my right side as everything on the feels like it tenses or seizes up.

I don't have baths, just showers but I feel heat helps, it does not make me sleepy. I often use hot water bottles to combat the aches and pains. My fingers and toes are often cold and I feel that m as kes the pain a bit worse.

Reading your posts, I don't think any of my symptoms match yours but there are some similarities regarding tingling and burning pain. Not knowing what it is is so frustrating, I feel a bit abandoned by the GP. I am desperate for answers, anything to point me in the right direction.

Life seems to be extremely challenging with what you have experienced regarding your daughter and your past. A close family member is going through the same thing regarding childhood trauma. I just wanted to say how brave you are to have got this far.

I find that GPs are very limited in what they can do to help but yours seems to be rather unhelpful. Fighting for the correct help and advice is so draining. x

 

[Keikochan]

@Louisiana My vision just goes blurry at times and often when I'm reading it gets very hard to focus on words. I do wear contact lens and glasses, I feel the contact lens work better. It does happen pretty frequent. No it didn't take long at all, I think I kind of got lucky with that. I'm really thankful. On the bad days you gotta take some time to rest, it is hard to do that and a lot of the time it takes so long to feel better that you think it isn't even helping but you have to know your limits because if you push them too much you just end up absolutely floored!

@People-huv-tae-know That is really terrible about your GP, is there any way to change GP? Or could you get an appointment and just tell them everything and just ask them for help cause you just need to know what is happening and it is effecting your whole life? I know it can be difficult to do, especially when you may not have much hope in the GP but it might be worth a shot even if it is possibly a last one before changing GP? It might also be difficult at the moment because most GPs are doing the phone appointments and it could be difficult to say everything.


A fan is a must in this heat!

 

[People-huv-tae-know]

@Louisiana My vision just goes blurry at times and often when I'm reading it gets very hard to focus on words. I do wear contact lens and glasses, I feel the contact lens work better. It does happen pretty frequent. No it didn't take long at all, I think I kind of got lucky with that. I'm really thankful. On the bad days you gotta take some time to rest, it is hard to do that and a lot of the time it takes so long to feel better that you think it isn't even helping but you have to know your limits because if you push them too much you just end up absolutely floored!

@People-huv-tae-know That is really terrible about your GP, is there any way to change GP? Or could you get an appointment and just tell them everything and just ask them for help cause you just need to know what is happening and it is effecting your whole life? I know it can be difficult to do, especially when you may not have much hope in the GP but it might be worth a shot even if it is possibly a last one before changing GP? It might also be difficult at the moment because most GPs are doing the phone appointments and it could be difficult to say everything.


A fan is a must in this heat!

Unfortunately I can't ask to see a specific GP, they are only doing phone appointments and triage appointments just now. I've seen the only female one and not sure I would feel comfortable telling a male one but if he can do a better job then it would be worth it. Last time I saw the GP she suggested it could be Fibromyalgia but everything I've read about it suggests it does not affect just one side of the body. She also didn't seem that concerned about my symptoms and said that perhaps I use my left side more than my right. But what I am feeling is not normal is it? A family member suggested through weight gain it has mostly piled on my left side but I don't know if that is even possible. My pain is generally better when standing. Since 2018 I have done a lot of sitting, especially during the hospital days, I have not been keeping fit, done a lot of stress eating and occasionally lifted heavy things like oxygen tanks without bending at the knees. Not sure if those could be factors too.

One thing I noticed in the mirror today was that my left shoulder is lower than my right. Upon googling it suggests scoliosis or spinal issue yet my physio said he does not think I have spinal issues. I'm beginning to wonder about an MRI scan but feel it is so unlikely in the current climate. It feels like a brick wall situation and definitely affects my mental health.

 

[spannermarie]

I was DX formally in 2012 (after a few years of symptoms - numb fingers/hot patch on my back/headaches). I had MRIs in 2010 was was told 'likely to be MS but let's not formally DX until you're ill' - thankfully that old-school approach has changed. Anyway, had 1st attack in 2012, was ill for 3 months with it, got my formal DX & was put on a 2-Yr drug trial for Ocreluzmab - the market name is Ocrevus I think. Had 3 relapses on the 'wonder drug' Ocreluzumab, and when the trial ended, was steered towards a different DMD (can't recall which one). I said I was troubled by the concept of keeping me ill but treatable, it didn't sit well with me.

l I found about an Aussie TV shoe '60 Minutes', which I watched on YouTube and featured a woman who went to Moscow for a hardcore chemo & stem cell transplant to halt her MS. This woman went from a rollator to running down the beach in this programme and I cried when watching it.
I made it my mission to learn about the treatment (HSCT), printed-off and read a lot of scientific papers from GoogleScholar! Asked my Neuro if we could discuss this an an option and he literally shouted at me in his email response which upset me - the gist was 'no, this is a dangerous treatment with risk to life and is ONLY suitable for people with advanced MS'. My reaction was 'why only advanced MS? It's too late by then? Surely do HSCT early-on in the disease?'.

So...I went behind my neuro's back, whilst maintaining a cordial relationship with him, to keep him on-side. I found an Italian hospital who do HSCT, flew over there, did various tests and got the green-light for treatment - thousands of miles from home (not great) and 60k Eur (which thankfully I had at that time). Due to the distance, I really wanted the HSCT in the UK so I researched a haematologist in London who does HSCT, I won't name him but he is in a recent Radio 4 doc on the treatment. Saw him, he asked a ton of questions to ensure that he knew that I was knowledgable about what HSCT involved, and he told me that I needed my neuro's permission to have the treatment. Oh dear :-( So.... I again, behind my neuro's back, and had an appt with one of his peers, who sits on a couple of NHS Boards with him. Told him all I'd done re: Italy, the UK neuro etc and this 2nd neuro effectively said 'I will back you up in your quest for HSCT, I will talk to your Neuro'. Brilliant! Took 18months in total to get the approval letter (my neuro really didn't want me to do it, but this Patient Board eventually discussed my case and provided approval. And then in Nov 2015 I went to King's College Hospital and had my treatment - it was very invasive, there was a 3% risk of me dying, which I knew and fully accepted, and I was on lots of drugs for a while, but it has changed my life. My EDSS is 1.5, or 1 and I'd do it all over again in a heartbeat.

 

[Gullri]

@Louisiana just found this thread, I have got MS, how did it go?

 

[knivesnflowers]

parking myself! been convincing myself for about a year that MS could be a possibility for me after following someone diagnosed online and having literally every same symptom apart from vision issues (except when i get migraines)

already diagnosed with chronic musculoskeletal pain, chronic fatigue syndrome (CFS/ME), pcos, hashimoto's thyroiditis / underactive thyroid and rosacea.

i'll put my background in a spoiler box lol it's relevant but nothing that special ig?

Spoiler: symptom and diagnosis background

all started when the gp put my knee pains down to growing pains at like 10, then flat feet, then when i was 13/14 i was sleeping for like 17 hours and would still nap and be tired. tested for lupus (again majority of symptoms) but bloods were clear. thyroid was worryingly low and told i was close to a myxedema coma - got an urgent appt a few trusts over and diagnosed with autoimmune hashimoto's. ultrasound about six months later showed goitres but never had a follow up scan so no idea how they're getting on.

levothyroxine didn't alleviate any symptoms so then got the chronic pain and fatigue diagnosis and have been on amitriptyline coming up to five or six years i think?? same paeds team introduced pregabalin a few years ago and i get on really well with them both! only issue i've had w current diagnosis is that whenever i bring up additional or developed symptoms, they're always dismissed as an extension of what i already have and never investigated further. took a while for pcos to be taken seriously after going through the gp (shocking i know) - just switched from provera to pill bc of worries about bone density too.

put under neuro dept when moving to adult care, i feel like they kinda don't believe me. phone appt was basically just confirming what they already knew, didn't get the chance to tell him what had happened since the other hospital stopped communicating when i hit 18 / at the start of the pandemic. moved to 10mg nortriptyline from 25mg amitriptyline to try and help with migraines - worst experience of my life. was a shell of myself for three months while i stuck it out and then adjusted back to normal meds. really bad place mentally as i felt out of control and like i'd regressed years with my pain / ability to cope day to day. sumatriptan for migraines taken as and when they happen seem to be becoming less and less effective and rebound headaches linger for days.

main differences i've noticed - when i stand still for not that long i just wobble and stumble?? maybe my right leg is worse but not obviously, i find myself shifting weight to try and avoid it but happens anyway and makes me look like i need to piss my pants lol.
right wrist has a lot of pressure - same sensation as my knees. constantly clicking, can see / feel the bone a lot more than i used to, sharp pain up forearm whenever after it pops / if i don't pop it when i feel the need to.
like i said migraines are less affected by sumatriptan and linger for longer.
tmi but i poop like once a week ... maybe that's unrelated? diet is full of green veg tho
any flare ups i get aren't after major events (pre pandemic i would sacrifice a few days if it meant memories with friends at a gig) but now i stay out shopping for an hour too long and i'm wiped out. the pain they cause is very reminiscent of that before pregabalin was prescribed so it's frustrating that more of my current meds could help at least that.

anyway that was kinda long - my apologies - but hopefully it resonates / it's painfully obvious to someone what else it could be. tysm!!!

parking myself! been convincing myself for about a year that MS could be a possibility for me after following someone diagnosed online and having literally every same symptom apart from vision issues (except when i get migraines)

already diagnosed with chronic musculoskeletal pain, chronic fatigue syndrome (CFS/ME), pcos, hashimoto's thyroiditis / underactive thyroid and rosacea.

i'll put my background in a spoiler box lol it's relevant but nothing that special ig?

Spoiler: symptom and diagnosis background

all started when the gp put my knee pains down to growing pains at like 10, then flat feet, then when i was 13/14 i was sleeping for like 17 hours and would still nap and be tired. tested for lupus (again majority of symptoms) but bloods were clear. thyroid was worryingly low and told i was close to a myxedema coma - got an urgent appt a few trusts over and diagnosed with autoimmune hashimoto's. ultrasound about six months later showed goitres but never had a follow up scan so no idea how they're getting on.

levothyroxine didn't alleviate any symptoms so then got the chronic pain and fatigue diagnosis and have been on amitriptyline coming up to five or six years i think?? same paeds team introduced pregabalin a few years ago and i get on really well with them both! only issue i've had w current diagnosis is that whenever i bring up additional or developed symptoms, they're always dismissed as an extension of what i already have and never investigated further. took a while for pcos to be taken seriously after going through the gp (shocking i know) - just switched from provera to pill bc of worries about bone density too.

put under neuro dept when moving to adult care, i feel like they kinda don't believe me. phone appt was basically just confirming what they already knew, didn't get the chance to tell him what had happened since the other hospital stopped communicating when i hit 18 / at the start of the pandemic. moved to 10mg nortriptyline from 25mg amitriptyline to try and help with migraines - worst experience of my life. was a shell of myself for three months while i stuck it out and then adjusted back to normal meds. really bad place mentally as i felt out of control and like i'd regressed years with my pain / ability to cope day to day. sumatriptan for migraines taken as and when they happen seem to be becoming less and less effective and rebound headaches linger for days.

main differences i've noticed - when i stand still for not that long i just wobble and stumble?? maybe my right leg is worse but not obviously, i find myself shifting weight to try and avoid it but happens anyway and makes me look like i need to piss my pants lol.
right wrist has a lot of pressure - same sensation as my knees. constantly clicking, can see / feel the bone a lot more than i used to, sharp pain up forearm whenever after it pops / if i don't pop it when i feel the need to.
like i said migraines are less affected by sumatriptan and linger for longer.
tmi but i poop like once a week ... maybe that's unrelated? diet is full of green veg tho
any flare ups i get aren't after major events (pre pandemic i would sacrifice a few days if it meant memories with friends at a gig) but now i stay out shopping for an hour too long and i'm wiped out. the pain they cause is very reminiscent of that before pregabalin was prescribed so it's frustrating that more of my current meds could help at least that.

anyway that was kinda long - my apologies - but hopefully it resonates / it's painfully obvious to someone what else it could be. tysm!!!

wanted to add to the differences bit but missed editing by like a minute...
the soles of my feet feel like they've been dipped in acid / skinned, esp. when barefoot or in the shower
my skin is very sensitive to heat to the point where my parents have called my normal temp showers cold (may be thyroid or rosacea linked too??)
if i kneel, any pressure directly on my kneecaps feels like they've just been hit with a big duck off hammer - hot, sharp nerve pain from skin, dull ache from joints and burning from muscles all at once

 

[Gullri]

parking myself! been convincing myself for about a year that MS could be a possibility for me after following someone diagnosed online and having literally every same symptom apart from vision issues (except when i get migraines)

already diagnosed with chronic musculoskeletal pain, chronic fatigue syndrome (CFS/ME), pcos, hashimoto's thyroiditis / underactive thyroid and rosacea.

i'll put my background in a spoiler box lol it's relevant but nothing that special ig?

Spoiler: symptom and diagnosis background

all started when the gp put my knee pains down to growing pains at like 10, then flat feet, then when i was 13/14 i was sleeping for like 17 hours and would still nap and be tired. tested for lupus (again majority of symptoms) but bloods were clear. thyroid was worryingly low and told i was close to a myxedema coma - got an urgent appt a few trusts over and diagnosed with autoimmune hashimoto's. ultrasound about six months later showed goitres but never had a follow up scan so no idea how they're getting on.

levothyroxine didn't alleviate any symptoms so then got the chronic pain and fatigue diagnosis and have been on amitriptyline coming up to five or six years i think?? same paeds team introduced pregabalin a few years ago and i get on really well with them both! only issue i've had w current diagnosis is that whenever i bring up additional or developed symptoms, they're always dismissed as an extension of what i already have and never investigated further. took a while for pcos to be taken seriously after going through the gp (shocking i know) - just switched from provera to pill bc of worries about bone density too.

put under neuro dept when moving to adult care, i feel like they kinda don't believe me. phone appt was basically just confirming what they already knew, didn't get the chance to tell him what had happened since the other hospital stopped communicating when i hit 18 / at the start of the pandemic. moved to 10mg nortriptyline from 25mg amitriptyline to try and help with migraines - worst experience of my life. was a shell of myself for three months while i stuck it out and then adjusted back to normal meds. really bad place mentally as i felt out of control and like i'd regressed years with my pain / ability to cope day to day. sumatriptan for migraines taken as and when they happen seem to be becoming less and less effective and rebound headaches linger for days.

main differences i've noticed - when i stand still for not that long i just wobble and stumble?? maybe my right leg is worse but not obviously, i find myself shifting weight to try and avoid it but happens anyway and makes me look like i need to piss my pants lol.
right wrist has a lot of pressure - same sensation as my knees. constantly clicking, can see / feel the bone a lot more than i used to, sharp pain up forearm whenever after it pops / if i don't pop it when i feel the need to.
like i said migraines are less affected by sumatriptan and linger for longer.
tmi but i poop like once a week ... maybe that's unrelated? diet is full of green veg tho
any flare ups i get aren't after major events (pre pandemic i would sacrifice a few days if it meant memories with friends at a gig) but now i stay out shopping for an hour too long and i'm wiped out. the pain they cause is very reminiscent of that before pregabalin was prescribed so it's frustrating that more of my current meds could help at least that.

anyway that was kinda long - my apologies - but hopefully it resonates / it's painfully obvious to someone what else it could be. tysm!!!


wanted to add to the differences bit but missed editing by like a minute...
the soles of my feet feel like they've been dipped in acid / skinned, esp. when barefoot or in the shower
my skin is very sensitive to heat to the point where my parents have called my normal temp showers cold (may be thyroid or rosacea linked too??)
if i kneel, any pressure directly on my kneecaps feels like they've just been hit with a big duck off hammer - hot, sharp nerve pain from skin, dull ache from joints and burning from muscles all at once

Hi sounds like you have a lot of medical issues There is lots of neurological illnesses and I understand that you need more help. I am swedish so my English is far from perfect

I would not wish MS on anybody else but I am happy to get meds that help. What my meds does is making my immune system weaker so it doesn’t attack my nervthreads. I also have almitripline and gabapentin for nervpain.

Have you been through MRI? I have no medical knowledge eccept from that I have MS. I do have PCOS too just like you.

When I had MRI they saw lots of inflammation in my brain, neck and spine. My MS did not show on the spinal fluid test.

My balance stopped working one summer. If stood up and I put my ankles together I would sway back and forward. So much that I would fall over if I didn’t grab on to something. my left foot lost feeling and I could not bend my toes. All this came gradually in a couple of weeks and I spent time in hospital.

One thing, I went to the doctor three or four times in a month trying to get help and they did not understand what was wrong. MS does not show on blood tests and a regular drs thought I was just fine. I ended up sitting in emergency for a few hours, then spending time in hospital. Then getting diagnosed

sorry this got long, just wanted to help by telling you what seem similar to your symptoms

 

[knivesnflowers]

Hi sounds like you have a lot of medical issues There is lots of neurological illnesses and I understand that you need more help. I am swedish so my English is far from perfect

I would not wish MS on anybody else but I am happy to get meds that help. What my meds does is making my immune system weaker so it doesn’t attack my nervthreads. I also have almitripline and gabapentin for nervpain.

Have you been through MRI? I have no medical knowledge eccept from that I have MS. I do have PCOS too just like you.

When I had MRI they saw lots of inflammation in my brain, neck and spine. My MS did not show on the spinal fluid test.

My balance stopped working one summer. If stood up and I put my ankles together I would sway back and forward. So much that I would fall over if I didn’t grab on to something. my left foot lost feeling and I could not bend my toes. All this came gradually in a couple of weeks and I spent time in hospital.

One thing, I went to the doctor three or four times in a month trying to get help and they did not understand what was wrong. MS does not show on blood tests and a regular drs thought I was just fine. I ended up sitting in emergency for a few hours, then spending time in hospital. Then getting diagnosed

sorry this got long, just wanted to help by telling you what seem similar to your symptoms

thank you so much!! i really appreciate your reply <33

last time i had an mri i was abt 8 y/o for headaches but not sure what came of it tbh (ironic considering how much they affect me today)

i feel like what's holding me back from pushing any investigations is the frustration i've felt in the past when my new or worsening symptoms couldn't be explained other than 'you already have x diagnosis so it's probably *just* that' bc while i don't want to be ill i want to do something about the pain i'm in. thank you again for the reassurance and sharing your common experiences

 

[Gullri]

thank you so much!! i really appreciate your reply <33

last time i had an mri i was abt 8 y/o for headaches but not sure what came of it tbh (ironic considering how much they affect me today)

i feel like what's holding me back from pushing any investigations is the frustration i've felt in the past when my new or worsening symptoms couldn't be explained other than 'you already have x diagnosis so it's probably *just* that' bc while i don't want to be ill i want to do something about the pain i'm in. thank you again for the reassurance and sharing your common experiences

If it is 8 years since the last mri it should be possible for the dr to send you on one. A lot can have happened in those years. And you have loss of sensation in feet as well. The balance problem sounds neurological from what I have heard. Take care
Edit you were 8 I see, but must still be a few years ago.? I have heard of really young people getting ms

 

[knivesnflowers]

If it is 8 years since the last mri it should be possible for the dr to send you on one. A lot can have happened in those years. And you have loss of sensation in feet as well. The balance problem sounds neurological from what I have heard. Take care
Edit you were 8 I see, but must still be a few years ago.? I have heard of really young people getting ms

yep i'm 20 this year! i'm under neuro now at adult services but only had one phone appt so not that familiar with my doctor - will mention it at my next appt though <3