Hi everyone, Started getting symptoms in 2007 after, someone close to me died suddenly, a total shock. Three months later my mum passed away. Had numerous different test, in 2010 was diagnosed with rrms. Main symptoms were numbness from the waist down on movement, also tremors which I take medication for. Balance issues. I started copaxone in 2018, but new lesions were seen on MRI so started on tecfidera in February, getting some flushing, sickness. Bearing with side effects to see if they go away. I find myself now worring about how ms will affect me in the future. If tecfidera will work ? Should I have started dmds earlier ? I know noone can predict, how ms is going to progress, but I canāt help but worry. If anyone would like to share, how there ms journey has been. As now I find myself thinking more about ms and the future after 10 years of being diagnosed. Maybe I am having delayed reaction to being diagnosed. Any replies would be appreciated. Thanks.
Hi, my journey is very different to your`s.
I have Spinal PPMS
It took 22 years to get a proper diagnosis.
My type of MS has no treatment nowā¦had it too long.
DMDs work differently on different people.
Even with great results from DMDs, no-one can give you a prognosis. It is silly really to think your MS will be like someone else`s. Sorry, dont mean to be hurtful saying that.
Even a top neurologist would be loathe to try to predict anyone`s journey.
Best thing to do is take life steadily, pace your activities, accept help when it is offered and NEVER, EVER beat yourself up for having MS. It chose us and there`s nowt we can do about that.
It can take quite a long time to accept MS in your life and sometimes, you think you have your head round it and then something happens to re-enforce it and you can have a wobbleā¦all perfectly normal.
So if I can offer any other advice please ask.
Take care and keep safe.
Boudsxx
None of us can predict how this is going to pan outā¦ in the past 6 years since I finally got what I hope is a correct diagnosis (this time), I have learnt to take just one day at a time and not worry over much about the future - a sure way to scare yourself into a state!. All the āif only I hadā¦ā or āif only I hadnātā makes not a blind bit of difference nowā¦ we are where we are, and have to go forward from that spot! I did quite a lot of stressing out, fretting and crying before I realised it was completely futile, isnāt going to change anything and will do no-one any good.Now I think āIāll deal with it (whatever it is) when it happens, but until then Iāll just ignore it.ā Itās not your fault that the MonSter picked on you!
At almost 60, it has been over 5 years now since I was diagnosed with RRMS. First started after severe back trouble, not for first time mind you, after which, my then partner says to me I was trailing my left foot whilst walking. I put it down to what years ago would have been referred to as a gammy leg. Had also ongoing pain with my back on same left side and eventually decided to go to my GP; 9 months later and after a battery of tests was confirmed with RRMS.
Am on tecfidera and at outset high doses of Vitamin D in the form of a complex. Reviews from my MS consultant suggest my MS is fairly stable and I now also have been removed from Vitamin D prescription as blood tests have shown normal blood levels of it. However I still take a shop bought form of it as it is well-documented that incidences of MS are high in countries of the Northern Hemisphere where natural sunlight is reduced (and natural levels of Vitamin D can be become depleted).
My mobility is still reasonable but my now wife feels my left foot trailing is getting progressively worse; that said, I feel it is just more pronounced in evenings when I am tired and is probably also linked to ageing. Most days I have some degree of pain in back and down both legs as pin and needles. I take gabapentin for pain relief but find it can cause constipation which the MS amplifies even worse; I take Magnesium Citrate for this which seems to help and a stronger laxative when it is severe.
Am still in full employment and try to remain positive. MS is a game changer but not the life sentence everyone fears. As my wife also reminds me āwe could be hit by the proverbial bus any dayā.
Hope this is of help.
Regards
Hi Bracknaghā¦great positive response. Good for you.
Boudsx
Diagnosed the same time as you |late 2006). Worked for a year after diagnosis before a bad relapse.
Started on Rebif, happily worked, and lived a normal(ish) life for eight months.
What I have learnt from this wonderful illness is that it is very unpredictable. Two tips from personal experience is, avoid stress, and steer clear from people with contagious illnesses. (I know with the world right now).
Ten years ago I could not walk at all, nowā¦a good day 100 yards.
As i said unpredictable.
Stay strong.
I was diagnosed in 1992 after going numb down my left side,couldnāt speak or stand up so had all tests which included MRI anwas diagnosed RRMS.I think it was brought on by a very nasty fall where i badly hit bottom of my spine.I recoverd from that bad relapse after 6 month.Then in 1993 my daughter was bornā¦a relapse followed 6 week after i gave birth.Then i went into remission for 8 year and thought my MS diagnosis had been a mistake.I very suddenly lost my mum in 2000 then had a bad relapse and then relapsed every 2 year or so but the remmision was not as good as my other relapses.I have had MS 28 years now and still having relapses which have got more severe over the years.From the start of my diagnosis i told myself i would not worry over the what ifs,and said i would deal with the bad times if and when they happened,which i always have,and thatās my way of dealing with it.
Hello, I had an optic neuritis in 2004 where I became entirely blind on my left eye. Had IV of steroids straight away and recovered well. MS was mentioned at the time but I wouldnāt hear of it and didnāt want to go for MRI or lumbar puncture (This was in France at the time where i think we are diagnosed quicker). I carried on my life as usual. Then I had other episodes, less severe but after two years I found it worrying enough that i eventually went for lumbar puncture and MRI. I was diagnosed with MS and started treatment. I have taken Avonex for a bit more than 10 years and been under Tecfidera for the last couple of years.
One thing that was a life saver in my case was that my neurologist recommended I did some sophrology (again that was in France). Sophrology is not so known in the UK. It has similarities with mindfulness but in my opinion is easier to implement and go further (I tried both and I have now become a sophrology practitioner). That transformed my life. Like gedthered68 mentioned stay clear of stress to start with. I think if you can find a method to help you manage your emotions and calm down that will be great help already. It also helped me regain confidence in myself and in the future. I donāt feel I live with a hanging sword above my head anymore and I take life as it comes. I had three other relapses over the last 14 years but I always recovered quite well and I am lucky and grateful to be able to enjoy my life.
I know every story is different but I do believe you have all the resources within yourself to deal with this. Iād definitely recommend you look into some meditation and gratitude techniques. And like Boudica405 mentioned. Donāt beat yourself up. Acceptance and kindness towards yourself can go a long way.
I wish you all the best.
Iām I undiagnosed and struggling bro deal with everythingā¦ Dr just keeps saying Iām stressed out and prescribing mirtazipene 15mg . Doesnāt seem to work as I know itās an anti depression drug . My wife thinks Iām a drama Queen and is on the verge of leaving me ā¦ we have a 10yr old that worships me but Iām a state ā¦: help ?? Steve (removed by moderator)
I find the best way to deal with mine is to not put it at such high importanceā¦i have MS SO WHAT. I have friends battling the worse cancers one friend it is horrific the tumor is growing out of her breast. She has just gone to spain for radical treatment. she is kind of my inspiration.
I have another friend with same breast cancer who is really struggling as it is now spread. My brother could possibly have cancer in his sinus.
I have PPMS, so what. it is what it is. My brother in law has RA, my friend who i talk to everyday has terrible arthitis i cant imagine her pain, she loves to cook and continues to do so.
what makes my disease worse then hers?
Our life expectancy is not much different then someone without MS. Yes sadly some of us end up chair bound, but that can happen in strokes too which are pretty high per capita.
I have been given PPMS and i deal with it by accepting it for what it is. I care for my body to enable my body to deal with it better, i give it good stuff lol. I dont abuse myself. I am determined as long as it takes i will stay on my feet. I had a scare recently ended up in hospital.
why because i pushed myself way too much. they thought i had a stroke, as my left side had got very weak. it wasnt a stroke it was a glitch in my MS. My neurologist told me to stop pushing myself. so i have.
I am 70 this year have had a great life with and without this disease. I lost my husband and my mum. I had MS then and i am still moving forward. I often wonder why i make an effort but so much to see everyday.
I look out my window and there on my tree a family of long tailed tits, next day i have visits from chaffinch, blue tits and yellow tits and of course the pigeons, so i feed them all lol. I do wildlife videos at night it gives me great joy.
I am supporting both my friends with breast cancer the best way i know how.
I also support orphan children in kenya nakuru, i also sponser 3 girls to go to school there. I am making a difference to their lives.
so whilst yes i have PPMS i also have the love and energy to spend it on helping others too.
sorry I am in a phase in my life where i get a tad exasperated. blame it on the state of the virus which seems to be affecting peoples minds and turning them into arrogant selfish humans lol.
its 2021. I hope we get a handle on the virus.
ANON. stop focusing on what you cant do or are worried will happen to you and focus on what you are doing and the life you lead now. we have no guarantees in our life with or without MS. One of my best friends had RRMS for years she went to work all the time travelled in her job was 65 suddenly getting back ache and the doctor kept saying it was her MS, in the end i persuaded her to get a private consulation through her work and she was eventually diagnosed with spinal tumor which was non operable. I lost her six months later. she died of cancer with MS.
so you see i have seen so much other stuff i dont worry about my MS anymore. so many things can happen to us. I have a great life in a way i love my wildlife and now getting involved with a newsletter for the sheltered where i am living. I always find things to do.
dont worry about where it is taking you, you actually hold the reins not the MS. xx
HAPPY NEW YEAR
sorry i have wafflititis. xxxx
CC, I agree. This is how I live my life too. Sorry to hear yr friends are suffering with disease. I am sure they are glad of your help.
Thanks for such an upbeat post.
Anne
Crazy Chic Good advice there. I was first diagnosed with RRMS in 2015 and my wife then told me to keep positive and remember you could have a lot worse or in the future who knows what could happen; we may be run over by a bus. So chin up I am 60, still working full time, am a director in 2 other companies and am contemplating starting another new business. Granted at times I get down and feel drained but just snap out of it when I see what other folk are going through. Regards
Good post CC. Iād concur.
Iām undiagnosed with numerous niggling symptoms which I feel have come and gone over a period of 6-7 years , I may even recollect some vague ones as far back as 20 ! . I have strange sensations across my face and tingling pins and needles in both hands and up forearms , some bladder problems and odd vision disturbances . Balance issues again all a bit vague hence my doctor primarily sending me off to the chemist for anti depressants . Sleeping is a problem as I shake and jerk quite violently when trying to nod off . Iām 55 and worried Iād be diagnosed as late onset which I read is not a great prognosis . My wife also thinks Iām a hyperchondriac and just totally stressed , I know my own body and itās not natural how I feel . I need a proper diagnosis and some treatment and maybe a reassurance I can ride this for a few years still working and providing for my family ā¦ these symptoms do come and go and feel Iāve missed being diagnosed as RRMS and put into the late onset PPMS .?? Could this be the case ??? . I do get muscle twitches heavily on both calfās and some upper body ones but not that last too long ā¦ Iām a bit all over the place at times and collapse in a depressed anxious wreck !!! Cos nobody seems to understand what Iām going through ā¦ Steve ā¦ Iām fully mobile at the moment and hope to be so as long as possible
Hi Hullcity
Please donāt consider this glib but you need to take a week off from obsessing about MS.
I do understand because it isnāt normal when your body refuses to do what your brain tells it.
However, when going through my own diagnosis, It was my first thought every morning and last thought every night.
So once I stopped myself from obsessing, I was able to resume some normality.
Now 12 years on normality has changed but Iām still alive!
When achievements are thin on the ground, see waking up and being alive as being something to congratulate yourself on.
Have you tried amitriptyline? It is mainly for reducing anxiety but has a wonderful side effect of helping you to sleep.
maybe worth a try.
I too remember odd symptoms from as early as 12 years of age.
trouble is, adolescence is often seen as a strange age (which it is) so my GP listened and helped as best he could.
If it was the beginning of MS Iām glad that I remained blissfully unaware and was able to have some mad crazy times until diagnosed with RRMS at 50.
If it turns out to be MS then it is what it is, RRMS or PPMS.
Please Steve, try to calm yourself down.
Look after your mobility!
Carole x
HullCity Good advice to date. A MS diagnosis anytime is not good but if you see other young patients at MS clinic on crutches then we need to feel lucky. When I was first diagnosed my consultant asked how I felt about it. My reply was ānot so goodā to which they responded feel lucky as in your mid fifties you have had a good life; wow not great I thought but on hindsight knew where they were coming from. Agree MS is perhaps lying dormant in our bodies years before diagnosis. Was plagued by bad back pain for years before diagnosis and can remember attending osteopath for it and them vividly saying āthere is something in your system which I cannot explainā. That could have been MS back then but no point looking back too much as nothing we can do about it now. So lets make best of it and boogie on down. Regards
Thanks for your helpful comments and I understand where your coming from , I canāt let this take over my life completely whatever it is . Iām usually quite an active guy and work hard taking speed of thought and action for granted as I did sleep , at the moment itās not quite the case . Stress is what keeps coming back at me as a diagnosis but I still feel something is not quite right , if I push for an MRI would u think that would give some clarity ? My back has played me up for a while , my worry is if it is MS some treatment via DMDās would help slow things down ? Which obviously wonāt be available to me without diagnosis . Iām on mirtazapine at the moment which helps me sleep 15mg . Iām better now I can sleep but daytimes Iām a bit fuzzy headed and clumsy ā¦ thanks for the helpful commentsā¦ itās appreciatedā¦ Steve
Wise words Bracknagh. The Serenity Prayer springs to mind. Stay safe. Retro.
Hullcity Yes you could push for a MRI but no gaurantee it will provide the solution. If MRI shows lesions they in combination with your other aliments may lead them to a diagnosis of MS and they will want to start you on DMD ASAP; if negative your back at square one. Also note a DMD will not sort your back pain. Your GP may suggest amitriptyline, pregablin, Gabapentin, etc for that. Regards
Hi i dont think you are a hyperchondriac I think what you have to do is sit down quietly and work out what happened to you 7 years ago. Our past is usually the key.
when mine started oddly around 1998 i had weird odd things didnt take much notice until 2000 went blind blah blah. Then i sat down and realised in 1997 i lost my best friend my father so i put it down to the stress of that.
i had worsening mobility after my 2000 not in a bad way but things were going off made no sense, even then i didnt think much of it. stiff legs walking towards the right, fatigue falling asleep in the office lol and meetings, dropping things jeez times i dropped my car keys. then scary stuff not being able to drive not feeling my left leg, ring my PA to collect me for work, just little things. until 2006 it got worse, bladder worse, mobility stiff legs, cramps, even then i didnt twig i though it was overwork believe me i was doing about 60 hours i had 11 learning centres to deal with and 54 tutors lol.
couldnt have a hot bath, then one day went to a car boot on the sunday i think it was 10th september 2006. I loved car boots but within 10 minutes my legs were so stiff i had cramp i could barely walk and my hubby had to take me home. the crowning date 11th september Monday i struggled to get out of bed. my husband insisted on going to the doctor and they get me in. my doctor did some tests and said you need to see the neurologist and that was my journey 16 years it took.
so was it the death of my father which triggered it?
Your symptoms are all so vague. MS really is it? I doubt you would be diagnosed with late onset MS or PPMS. My illness has always affected my eyes and my spinal cord and my left side leg and foot.
Some of your symptoms actually can be down to lack of magnesium, vitimin D especially the muscle twitches.
what you have to do is. work out the worse symptoms which actually bother you right.
Muscle twitches lower level DYSTONIA.
Hypnogogic jerks when falling asleep is actually quite NORMAL. over 70 percent of people experience them at some point.
Anxiety can cause strange sensations and pins and needles.
I think the second thing you should concentrate on is eye disturbance and bladder issues.
so 3 things, dystonia, bladder and eye.
Once you start adding all the other stuff it screams ANXIETY and DEPRESSION.
I hope i am making sense.
go back 7 years did something trigger this.
look at your diet, and your lifestyle. your work etc, the outside influences of stress etc.
when you start talking about DMD (lower post), it throws me a red flag. I didnt even know what a DMD WAS for many years lol.
with your symptoms honestly i would never have ended up with MS.
BUT you do have 3 flags which i think need to be checked.
dystonia
bladder
eye
You are fully mobile after severn years i was not.
so i agree with all the wise people on here. You need a break. sit down think the key is going to be in your past.
take care, you have obviously got something going on. but you need to only concentrate on main things ok.
IMHO.
this may or may not help but it is my journey and boy its been a long ride lol.