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Autoimmune disease

MS stuff

166 replies

TheClaws · 28/04/2017 04:48

Great to see this new area set up ... in this thread, could we talk about our MS issues? Anything to do with symptoms, treatments, medications, alternative therapies, questions, chat - even a general let off steam is fine Smile

OP posts:
TheClaws · 28/04/2017 04:56

I'll introduce myself first - I've had RRMS for 21 years. I'm 45 now with a 17 year old DD and a 16 year old DS. The first 19 years or so we're rough - lots of disabling relapses, loss of speech, unable to write, unable to walk, etc. I went through Betaseron, Rebif, and Copaxone without finding much relief, then was put on Tysabri three years ago. It has been wonderful - no major relapses! Just a couple of flare-ups. I am JC virus positive but crossing my fingers and staying on course for the moment.

OP posts:
PinkBuffalo · 30/04/2017 15:32

Hi TheClaws
Thanks for posting. Not sure if I'm allowed here, but my mum has secondary progressive MS. Sadly we are in the position that nothing more can be done, so on no medications. We deal with a supra pubic catheter and wheelchairs, but she is getting so disabled, I have had to start looking at care homes for respite care in case me or dad end up in hospital.
I worry about posting on topics regarding MS, as I really don't want to scare people who are in the early stages. Certainly not everyone ends up as bad as my poor mum, but it would be nice to have somewhere to come when life gets too hard.
All the best to you and your family x

Hubblebubble64 · 30/04/2017 19:46

Hi, I have ms 13 years, now secondary progressive. Still walking but only short distances or legs stop cooperating, worst symptoms pain and fatigue. Working and raising a family the best I can. Delighted to have somewhere to let off steam and chat.

TheClaws · 01/05/2017 03:02

Hi PinkBuffalo it's perfectly fine for you to post. I really should have put that in the OP: loved ones/carers of people with MS are also free to post on the thread. And no, I wouldn't worry about posting about scary details. Even those of us in the early stages know all too well what could lie ahead.

HubbleBubble delighted to have you on board!

OP posts:
nonetcurtains · 03/05/2017 19:37

Hi, I was dx with RRMS in 2015. I'm 59yrs old. I work part time, luckily based just half a mile from home. I have to drive though as walking is bad. I do admin & finance for a small company.
Will be back to update more tomorrow, must go! Nice to meet you.

TheClaws · 04/05/2017 00:41

Hi nonetcurtains! Look forward to your update.

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moreslackthanslick · 04/05/2017 18:02

Hi everyone, I got diagnosed with RRMS in 2008, lots of debilitating relapses until I was given the then trial of Lemtrada. It feels like I've been cured! Sure I get tired easily and am suffering a bit of numbness issues this week as I have an awful cold but yay 😊

PinkBuffalo · 04/05/2017 19:00

Ooo lots of people on here now. Nice to discuss with people who understand Smile

moreslackthanslick · 04/05/2017 22:27

Hi Pink

My mum had secondary MS, I don't want to scare you at all but just to say I understand.

Mum needed a catheter from time to time and was in a chair most of the time although she did work (as a lay person on dla tribunals) and took holidays abroad up to a year before her death. (Of cancer)

But she did have some scary episodes and I know how worrying it can be.

To all of you, can I just say don't let Hcp's ever fob you off!

My mother was increasingly unwell for a few years before she died and everything was put down to her MS, when she eventually got admitted to hospital she was riddled with cancer and died 5 weeks later.

I had a swollen red leg some years ago and my Gp put it down to MS - I had seen a DVT in my ex husband so went to A&E - it was.

nonetcurtains · 05/05/2017 08:55

My main issues are pain, balance and spasms. Taking Gabapentin & Baclofen, which helps a lot. My DMD is Plegridy (for now).

My MS nurse can be a bit dismissive, I told her last year that I thought I was having a relapse but she disagreed. Symptoms got steadily worse over 8 months and when i had my annual appt with Neuro he arranged a full MRI with contrast.
It showed my MS was active so have recently had a 5 day course of IV steroids. It's helped a lot. Will discuss change to DMD when I see him again next month.

I hope everyone is feeling ok this morning.

TheClaws · 08/05/2017 11:31

NoNetCurtains, I haven't heard of Plegridy - I must look it up. I've had quite a few steroid courses, but not for a while now.

Even after all these years, I get confused between a relapse and a flare. I think we know our own bodies best so a dismissal from a doctor/nurse stings - we feel it. I had one last year that isn't 'officially' counted. I count it because I lived it!

OP posts:
PinkBuffalo · 08/05/2017 17:27

This reply has been deleted

Message withdrawn at poster's request.

toomuchicecream · 09/05/2017 18:22

Not sure where to post this, so I thought I'd start here! I was recently diagnosed with Clinically Isolated Syndrome so I'm sitting it out to see if it develops into MS or not. My only symptom is muscle spasms in my legs which leads to extreme fatigue and a limit in the length of time I can stand for to a few minutes. I'm trying to convince my husband that a hot tub would be really good for my legs! Has anyone ever used one on a regular basis for muscle spasms? Can you point me in the direction of any research/wider reading that might help make my case - or convince me that I don't want one before we splast out? Thanks.

Hubblebubble64 · 09/05/2017 19:29

Hi, has anyone any suggestions for neuropathic pain, I am on gabapentin/nuerontin but the burning pain in my arms and legs is unbearable. I have a appt with my pain management doctor on Thursday and would love advice on what people have found effective.

emma2468 · 09/05/2017 21:53

Hi I'm a RRMSer 33 years old dx 10 years next month and have DS 6yo and DD 4yo. Due to start Avonex in a couple of weeks. Been struggling with a relapse since last Aug. Mainly pain related too. Walking and balance is a bit shite. And just done my DLA to PIP application!!

nonetcurtains · 10/05/2017 09:40

toomuchicecream just a thought re hot tub - I have heat intolerance and a hot bath will leave me so weak I sometimes need help getting out of the bath.
My legs turn to jelly and have no strength at all, it's quite frightening and will take take about 10 - 15 minutes to start to right itself. As my temperature returns to normal I suppose. I don't know how hot a hot tub is, or if you have any intolerance to heat, but it's something to consider.

nonetcurtains · 10/05/2017 09:41

sorry posted too soon - I take Baclofen for muscle spasms but I know it doesn't suit everyone.

Falconhoof1 · 10/05/2017 21:31

I was dx with RRMS 22 years ago. Still mobile and in pretty good health. Main problems are fatigue, vertigo and some bladder and bowel problems. Just started a claim for PIP but not holding out much hope as very hard to get, but my MS brings with it all sorts of little problems that make daily living that bit harder. Still grateful that I'm in such good health though. X

TheClaws · 11/05/2017 01:10

Hi all newcomers!

Interesting to see are stories are all different but there are common threads. Fatigue is a killer all round. I'm three weeks into a rehab program which has been great - I wanted to develop some strength and stamina, and address the fatigue. I do feel better. In the program, I do physio, hydrotherapy and OT. Has anyone else done something like this?

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MSLehrerin · 11/05/2017 07:34

Hi all.
A little bit about me: I've had it for about 25 years and am doing ok. Severe fatigue at times and difficulties walking - was RR but neuro and I both thinking SPMS now. The label of what type doesn't really matter tbh, it's still the same stuff we deal with day in day out. I've never taken any DMDs, only Baclofen for muscle stiffness in my legs. I use a stick or crutch when necessary but not all the time. I work full time. MS is a right royal pain in the backside at times but it's definitely not the scenario I had talked myself into at diagnosis πŸ˜ƒ

PinkBuffalo · 11/05/2017 16:56

toomuch my mum is like nonet in that heat certainly doesn't help her. We must be the only family dreading warm weather! My mum takes clonazepam (prescription) for her spasms which seems to have helped a bit.

fizzingwhizbee · 12/05/2017 20:05

Hi πŸ‘‹πŸ»

I have RRMS. DX in 2014, 5 days after finally finding out I was pregnant with my son.

Had my second DS 3 weeks ago.

I take Tecfidera as my DMT. I also take Gabapentin (for neuropathy), Tizanidine (for spasticity) and high dose vit D.

Mostly just bumble along really. Normally work part time as a finance manager but currently on mat leave.

Toomuch if you do have MS, I wouldn't recommend a hot tub. Heat is likely to exacerbate symptoms and make legs a bit wobbly. It tends to make my vision go a bit funny for a while

iwasagirlinavillage · 13/05/2017 12:16

Hello, I hope you don't mind me asking a question on here, I just thought some of you might know the answer.

I am currently undergoing tests for one sided weakness, visual problems, lightheadedness. A CT scan was clear, blood tests didn't show anything remarkable, I've had my eyes tested and eye health is all okay. I've been referred to a neurologist but the wait is likely to be quite long. MS is something that I have considered and has been mentioned to me. I had an initial chat with a chiropractor yesterday and he said I had a winged scapula on that side and he pressed on a nerve which sent pain down my affected arm and he said that could be indicative of a bulging disc. But he couldn't find a cause of the numbness in my leg and foot as well. So on that basis, and with the other symptoms he said he wouldn't be happy to treat me until I have a clear MRI, which is fair enough and sensible. So my question is, is there any connection with MS and either a winged scapula and/or a bulging disc? Thank you to anyone who has any knowledge of this.

nonetcurtains · 13/05/2017 15:03

well, I've never heard of either being an MS symptom, but some of your other issues could be.
Please don't jump to conclusions, no-one but a neurologist can dx MS. You say MS has been mentioned - by whom?
A neuro will consider your symptoms, history, the results of an MRI (brain and spine), maybe a lumbar puncture and usually blood and urine tests before making a dx.

Yes the waiting list for your appointment will be months (mine was 6 months). There is the option of going privately. A private neuro can refer you back to the NHS for treatment if necessary.

While you're waiting for your appointment, and to give the neuro the fullest picture, start a daily diary now of how you feel, symptoms, pain levels, type of pain, where it occurs, time of day, how long it lasts and so on. And remember to take it with you.

I wish you well.

toomuchicecream · 14/05/2017 19:20

Thank you for your hot tub responses. Need to think a bit more carefully - as yet, I've not noticed heat making a difference to me but my neuro did say that it often does. Bugger - I'd pretty much got DH convinced....

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