Multiple Sclerosis

ConfusedChicca

ConfusedChicca

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Laura
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Just wondering if anyone else on here suffers from/has MS?
I was officially diagnosed last year by my neurologist, but according to my GP I was diagnosed in 2006 (when my symptoms first started).

That plus all the weird and wonderful symptoms, and the ways in which people react when I tell them I've got MS makes it such a confusing thing to be dealing with.

Luckily my sight hasn't been badly affected, apart from optic neuritis very occasionally, but my hands seize up at times which makes holding my camera and editing very uncomfortable.
 
I have a close friend with MS and I've seen what it does to her. Funny things like one day she can hold a cup, the next not.

It's a desease that is invisible so I know she gets those funny looks sometimes.

I know when she'd tired too, you can see it in her face. I treat her no different than when I knew her as a teenager, she was my next door neighbour for 30 years. Shame others don't.
 
Invisible symptoms are so annoying, because how does someone know how utterly exhausted you are?
I saw a GP that wasn't my regular one last week as I'm relapsing, all he said was "We all get tired sometimes". I know my own body, and he prescribed steroids so he must know I'm relapsing and not just a bit run down.
Good on you for recognising when your friend is ill, my husband can tell when I am now, and 2 very close friends have seen me at my worst, but most people don't quite get it.
 
Hats off to you for coping i have nothing as bad but, like you it an unseen illness. sorry but you have to tell most people most of the time it is hard but alas i have found that is the way..

heated gloves i have found to help with the hands. but then again i some time need ice.

have you found any support groups? i know alot of people are not into them but i am going to be seeking one out for me..

sorry not if that was no help at all.. take care and be strong..

Terri
 
Have faith Laura, my wife was diagnosed 19 years ago and with a positive attitude has remained very active. Her sight has actually improved from when she was first diagnosed, but many other symptoms come and go. She has a mobility scooter now and remains totally independant. Some days she is good and some days she really struggles with it. It is surprising how people have reacted to her having it and I know it took me a long time to understand how it was affecting her. I wish you all the best and hope that you don't let it get the better of you.
 
I don't normally get this wound up, so I've no idea why I feel like this now. It's all part of the ride though I guess.
 
ConfusedChicca said:
I don't normally get this wound up, so I've no idea why I feel like this now. It's all part of the ride though I guess.
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It sure is part of the ride and remember if you don't know why, neither do those around you. It is difficult for you all to understand and know how best to deal with it.
 
I'm allowing myself one more day of wallowing then that's it.
 
Hi Laura, if it helps I will give you a brief bit of history.

1979 (aged 15) - I collapsed at school, numbness down one side. Diagnosis - Physioplegic Migraine (or something like that)

1994 (aged 30) - Blurred central vision in my right eye. Diagnosis - Partially detached retina (Lazer treatment to reattach was unsuccessful)

2002 (aged, well you get the idea. ;)) - Loss of sensation in both hands. Diagnosis - Devic's Syndrome

2006 - Balance and walking issues. Diagnosis - MULTIPLE SCLEROSIS

For the 1st year after that, I accepted disability and, on medical advice, walked with a stick and sometimes used a wheelchair.

Then one day I thought, **** this! I took up photography and decided that, although I had MS, it didn't have me!

I wish you all the best for the time ahead but me best advice to you is to do all you can to be in control.
 
Was diagnosed in May this with MS.
Took about 2 years and countless tests to get the diagnosis.
Had 4 MRI scans but they were all clear.
The lumbar puncture was key, came back positive with high value for oligloconal banding. The headaches that came with the LP are not something I wish to experience again.
With my neurologist's approval I went for a 2nd opinion to see one of the top docs from the Walton centre. He confirmed what my neurologist had suspected.
All I can say is thank you Bupa. Made life a lot easier.

My main symptoms are a feeling of sunburn down my right arm, across my shoulders and in patches on my left arm and the"weapons grade fatigue".
Fatigue is the biggest problem, I'm now down to a 4 day week. By Friday I'm done for.
It seems to have a thing for the right side of my body.:thinking:
Had to give up my D80 as I couldn't handle the weight of the camera for any length of time.
Right foot is slowly getting numb/painful. Struggle to drive the wifes car as I couldn't feel the pedal but due to medication the DVLA has revoked/refused my license. That was the biggest blow both psychologically & physically as walking any distance becomes painful.
Knocking back a nice collection of tablets to help with things and manged to get Sativex(the cannabis based stuff, comes in a spray and tastes vile!) but gives me the munchies and makes me feel spaced out.

Feel like I've just typed an essay.

I have good days and bad days. I get ratty with the kids. The wife has been brilliant, though she's not happy about having to do all the driving.

Getting my GF1 last year was a real help, meant I could carry on taking photos. Though recently due to things getting a bit bad, photography has taken a back seat.
Managed a 50 mile bike ride back in September and rasised some money for the MS society in the process.

Phew.

Robb
 
I had similar symptoms last year and my GP told me I was exhausted and should go home and watch daytime TV for a while but then I went back and got a Locum doctor who thought I may have MS.......was told it would take a year to see a consultant, so paid £160 for private consultation( Next Day Appointment). He told me that I had NOT got MS but had suffered a Stroke, Mild, but none the less has it takes it toll at times. I try to stay positive every day and I am very grateful for every breathe I take.
 
This is spooky as I've been concerned about this.

A few years ago I suffered regular dizzy spells sometimes lasting days. Vestibular tests showed nothing out of the ordinary although it has to be said the day I had the tests done I was feeling fine. MRI also showed nothing.

Then I suddenly had a numb 'drop foot' which was investigated but they found nothing obvious so the hospital said it was most likely nerve compression due to sitting cross legged.

Last year I woke up without the use of my right arm. They kept me in hospital as they were concerned about a stroke. Turned out to be radial nerve palsy - all they could come up with was I must have slept on it funny. 4 months I was without the arm till the nerve repaired itself followed by a month or so of building muscle back.

Just last night - the exact same thing has happened to my left arm whilst watching TV so I'm going to the doc tomorrow to no doubt start all over again.

Perhaps I'm just being paranoid but at what point will anybody wonder if these 'freak' things are related ???
 
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My wife has MS and was diagnosed last Feb (18 months ago). She is now on Rebif injections 3 times a week in an attempt to slow down the relapses. She suffers from weak grip and has isssues with walking and standing up. She is OK in familiar surrroundings but for other things uses a mobility scooter.

One of the biggest issues that causes her relapses is stress - almost imposssible to avoid when you have a son with severe disabilities. She has been worse recently but that is mainly due to William going for neurosurgery next week :bang: :bang: :bang:.

We take each day as it comes and deal with the **** life throws at us as needed - the important thing is to realise that you are not alone and not the only one in this situation.

Keep smiling :thumbs:
 
Close friend of mine was finally diagnosed a couple of years back and yes, you can see in her face the really bad days. Mostly we swap horror stories and laughs (I survived a bad motorcycle accident that left it's mark) - mostly life is just today and with luck we wake tomorrow and no one can predict how that will dawn.

The best advice has been given - you have MS, the trick is to ensure MS doesn't have you. When you can do, do; when you can't, do something else ;)
 
Well I'm awake, feeling all drowsy and full of cold but better than I felt yesterday morning I think.
Started getting weird sensations in my spine near bedtime last night so spent 2 hours walking round the house, that was fun (not).
Most of the time I am in control of the MS, not the other way round, but when it does take hold it feel like its always had the upper hand.
 
ConfusedChicca said:
Most of the time I am in control of the MS, not the other way round, but when it does take hold it feel like its always had the upper hand.
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I find it hard some times to not let it take over, but when things are hurting and nothing will stop it. Fighting it seems to make me worse.
 
I totally agree, fighting it just isn't worth it sometimes. It's too hard some days.
I've actually felt better today, more positive anyway, but I'm sat here about ready to rip my foot off. it feels tense and twisted but it isn't.
 
dinners said:
This is spooky as I've been concerned about this.

A few years ago I suffered regular dizzy spells sometimes lasting days. Vestibular tests showed nothing out of the ordinary although it has to be said the day I had the tests done I was feeling fine. MRI also showed nothing.

Then I suddenly had a numb 'drop foot' which was investigated but they found nothing obvious so the hospital said it was most likely nerve compression due to sitting cross legged.

Last year I woke up without the use of my right arm. They kept me in hospital as they were concerned about a stroke. Turned out to be radial nerve palsy - all they could come up with was I must have slept on it funny. 4 months I was without the arm till the nerve repaired itself followed by a month or so of building muscle back.

Just last night - the exact same thing has happened to my left arm whilst watching TV so I'm going to the doc tomorrow to no doubt start all over again.

Perhaps I'm just being paranoid but at what point will anybody wonder if these 'freak' things are related ???
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No wiser after my doctors appointment - so it's back to neurology :shrug:
 
Doctors (by that I mean GPs) can't diagnose MS, and depending on how it presents it might not even cross their minds. Mine wasn't a typical presentation, only 10-15% of people's first symptom is leg weakness. It's apparently most common for eye symptoms to show first.

Just keep on at people til you get answers, because as hard as MS can be to diagnose, it is possible but even specialists hold off from diagnosing it at times.
Make a list of questions to ask and of your sy
 
Hi Laura, just wanted to stop by and say hello, my Mum has MS, in fact she was diagnosed when she was expecting me in 1978 though her symptoms started many years earlier. It's a cruel illness and my Mum has battled hard but the important thing to remember is that you are in control of how you treat it. I would recommend doing as much research as you can bare into things like changes in diet, lifestyle and relaxation therapies.... stress has a huge influence on how it progresses.

Also have you looked into the MSSociety and any support they can offer? Make sure you get everything you are entitled to in terms of benefits, care and support.... my parents always waited till things got really difficult before asking for help in the early years... these days there is no need to do that. (I'm sure you already have but thought I'd mention it as so many people seem to struggle on before seeking support that is readily available)

My Mum has now been living with MS for 32 years+ but she still smiles every day, she has 4 daughters, 9 grandchildren, a doting husband and a huge support network.

Best wishes,

Annie
 
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dinners said:
No wiser after my doctors appointment - so it's back to neurology :shrug:
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The whole nervous system is a bit of a mystery! Me Thinks....I hope you manage to get to the bottom of it all.......if you could go private you should try my consultant( he is in the royal victoria hospital (head neuroligist)) i think he would be well worth the visit...... they done a TV program on his skills and abilities....... keep the positivity flowing my friend:thumbs:
 
Laura Hi,

Many thanks for this thread, it is very interesting. Can I just change the focus a little and ask about your photography, how has the MS affected this?

I belong to a group for photograhers with disabilities so have an interest in this area of photography. Would love to hear a little more about your interests etc.
 
My mum has had MS for over 30 years, she's in her 70's now and still getting on with stuff, although recently she has had more attacks than normal.. there are also other problems related to, but not caused by the MS that's getting bad..

Laura, your not on your own, there are lots of people in a similar position, not to mention us that live with people in that position.. so if you need to chat, to ask questions, or just have a great big moan.. feel free..
 
fabs said:
Then one day I thought, **** this! I took up photography and decided that, although I had MS, it didn't have me!

I wish you all the best for the time ahead but me best advice to you is to do all you can to be in control.
Click to expand...

Having done several London meets with this stubborn old sod, all I can say is that photography is fantastic therapy :D
 
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