h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

How are things, CD?

As you may have noticed, De Myelin Nation is being reorganised ( Kea!) so hopefully your name will get put up in lights etc. very soon!

It's an unfortunate coincidence that most of us on here have been going through times recently, so not much spare energy floating around to sort things out.

One of the things that i find hardest to explain to "normal" people is that the whole damn thing is so completely unpredictable; i can be relatively fine one minute & in agony the next, no idea how long either state can last, so can't predict what i am capable of doing, let alone explain it to anyone else!

You end up using acting skills you didn't know you had, in social situations, you might arrive seeming perfectly OK, but half an hour later, feel like only an ambulance or firing squad can rescue you...but you have to keep on, or you get labelled "psychosomatic/neurotic/attention seeking etc"! I would like the person who invented these phrases to experience "psychosomatic" pain for just 5 minutes please, at an inconvenient time, when they are feeling mentally very positive & then get totally screwed up by a very real physical problem called "agonising pain" & have to pretend it isn't happening.

6am. Sleep? I read about it somewhere!

*here endeth the seethe of the day*

zdt

Since my last posting I've had another attack. This one scared me a little as it came just 1 week after the previous one finished, and the symptoms were similar but, if anything, a little worse. I went back to my GP who, by a stroke of luck (otherwise known as a cancelled appointment), was able to get me in to see the local specialist that day! When I got there he confirmed that I have MS and referred me to the area specialist at Birmingham.

The specialist said something that surprised me, though. He said, "You've had MS since 1990". I'd thought my first attack started in November 2000 and had to think what could make him think my MS went back that far. Then I realised he was referring to the optic neuritis that I've had screwing my vision in my left eye. That goes back to around 1989-1990. I have since found that I had a condition known as 'Benign MS'. Here's a site which describes MS: http://www.albany.net/~tjc/multiple-sclerosis.html This is their description of the 'Benign' form:

"After one or two attacks with complete recovery and without any disabilty, this form or stage of MS does not worsen with time and there is no permanent disability or disease progression.

Benign Multiple Sclerosis tends to follow, non-visible Sensory Symptoms (ie. Dysesthesia, Optic Neuritis, Paresthesias, Paroxysmal) at onset; not Motor Symptoms (ie. Diplopia, InCoordination, Tremor), with a totally complete recovery and no disability.

However, some in this category will eventually experience disease progression; their course of disease will change and evolve into the Progressive stages of MS, within 10 - 15 years of its official onset."

I have to disagree with them on a few points. I did *not* make a complete recovery. There's a permanent dead patch in the middle of my left eye, which may not be a 'disability' as such but makes life a little awkward sometimes. Also, the condition has evolved into relapsing-remitting MS, not progressive MS.

So that's where I'm at - physically fine at the moment and waiting to see a specialist, who probably won't recommend beta-interferon because my symptoms aren't severe enough! I don't mind, though - I have a phobia of hypodermic needles. I had to have a blood test yesterday, and I thought I could have my holiday vaccinations at the same time. Unfortuately the blood test stressed me so much that I freaked out when I went for my 'jabs'. I have to go back for those on Thursday.

*kea feeling neglectful lately *

I hope to do some work on the DMN page this week - will focus on the member's update

Sorry to hear you have had another attack CD, but glad you are getting some clarity about what is going on

*waves to zdt*

*waves back at kea* Don't worry m'dear, as & when!

Hmm, yes, it's somehow satisfying to get an actual "diagnosis", at least you can rattle it off at people when they ask "what's wrong?" There are many different types of MS it seems & not all are rapidly progressive, so please don't see yourself as being "doomed"!

I can really relate to the optic neuritis stuff, i have that too & it's getting distinctly worse, which makes me feel suicidal at times. i am an & if i lose my sight, life won't be worth living. Not only no artwork, but no reading, no computer, no hootoo...& unfortunately, no family nor close friends to help out.

To be honest, if my legs continue to go, it won't bother me too much, but the eyes are a different story. That's one reason i am giving in to pressure & having an exhibition of my stuff now, don't really feel ready for it, but it may be the last chance i get. i have an appointment with an opthalmologist on June 18th, we shall see what he says, maybe it's not as bad as i fear.

CD, when you say you have gaps in your vision in left eye, is it in central vision or peripheral? (i get flashes at the side, plus black spot, also on left side, but it's my left side in general that is worst)

Interested that you mention Birmingham, my old home town! You do realise Birmingham Eye Hospital is probably one of the best in the world, so you are in a good place! I have had my sight quite probably saved there many years back after an accident; & to all the s & s there!

Take care of yourself, easy to say, not so easy to do BUT stress definitely makes it all much worse. Do you have support from family & friends? Hope so. Do feel free to come on here & whinge whenever, honestly, it really helps!

zdt

Taking your points in order, Terri, the optic neuritis scares me, too. In my last attack I had a mild dose in my right eye, as well as the dead patch in my left eye. The thought of going blind scares the heck out of me, and there's no guaranteed treatment. Some doctors prescribe steroids to treat the condition, others say there's no guarantee that steroids will help. Plus there are the side-effects of prolonged use of steroids. I've managed so far, so I'll carry on as I am (untreated) unless my right eye becomes *seriously* affected. I'm not an artist, but I enjoy reading, needlework and using my computer, all of which rely on half-way decent eyesight.

As for the 'gaps' in my left eye, it's one gap in the middle. I have good peripheral vision and no 'blind spot' when both eyes are open, which is why I can drive around without any difficulty.

As for support from family, I have lots of it. Richard is always there when I need him and our mothers have both been supportive. His brother reacted inappropriately when told, however. Andrew had phoned Richard about something and Richard mentioned that I'd been diagnosed with MS. Andrew wouldn't even ask Richard about the prognosis when I was in the room!

Hi Cheerful just saw this.
Sorry- I was gone when it appeared or I would have spoken sooner.

Hope you are feeling a bit better.
Everything you said made perfect sense to me including you never fully recovered in 1990 but nobody told you of the diagnosis because it took another obvious event ( to them)

My sight would be gone by now if they'd followed the prognosis given. Thankfully - Although I cannot drive and reading is a challenge ,I have beat the odds so far and hoping to for a long while.

Take care of yourself Cheerful - So glad you have support.

*waves at CD & abbi*

Well, i went to the eye doc. It wasn't easy, i had hoped a friend would come with me, but he seems to have decided to become an ex-friend, oh well. but he did make the appointment for me at least.

I was scared stiff to be honest. But it was better than i thought, all done by an array of laser machines now it seems. Didn't like the puff of air in the eye, but realise this is to check pressure (glaucoma) & necessary. (mine is not "normal" but not enough to qualify as glaucoma)

The conclusion seems to be (it was all in French though!)

Yes, definitely have poor vision, due to 3 things: age, astigmatism from an accident & the nerve condition. But the damage to the optic nerve doesn't seem too bad, & so long as i accept i need pretty strong glasses all the time (not just for reading) & must have annual check ups, it should be controllable with luck.

It's better news than i thought. Hope you are doing OK, CD, do keep us posted please.

zdt

I'm three weeks into my latest attack and it's the worst so far. It started off with unsteadiness, poor coordination, and bad judgement, all of which meant that I've had to give up driving. (Hopefully that's only temporary, but the DVLA *might* decide to take my driving license away. Also, when Richard took me out for some retail therapy a couple of weeks ago, I had to borrow his dad's wheelchair or I wouldn't have got round the mall.) These were accompanied by 'light-headed' spells. The unsteadiness, etc., went away about a week ago, but the 'light-headed' spells have continued and got worse. (Actually, I've started to refer to them as 'disconnected' spells 'cos it feels like my brain is disconnected from my mouth (can't speak), hands (can't type) and legs.) I saw a neurologist on Monday and he's going to write to my GP and recommend a short dose of steroids to 'kick-start' an improvement. I hope they work 'cos if this continues I can kiss goodbye to ever working again.

I'm in a similar stage CD, I sold my truck. Only due to the fact that when it comes for a re-test I will fail due to eyesight. So rather then failing the test I just won't take it.

Even the chore of typing this is adding to my "funk"mood.





pedboy®

Well, today's the start of the sixth week of my current MS attack and the 'disconnected' spells are continuing. They only last for a few seconds at a time, but at their worst they come on every few minutes, which isn't pleasant. I'm also getting to the stage where I need a wheelchair for grocery shopping because I get tired so quickly. We've had to do a re-think about some things - we're going to sell my bike 'cos I can't use it any more, we may have to sell my car and the money is going towards one of those folding electric wheelchair thingies I've seen advertised. The whole thing is getting me thoroughly depressed.

Oh, and I'm putting on weight 'cos I can't get a decent amount of exercise any more.

Oh gawd, six weeks is a LONG time for one attack. Is the doctor being helpful as far as giving you useful practical information? Have you got a social worker? If not, bully them into it, get a dossier started right now, apply for every grant going, 'cos it takes ages to process.

It is when it all starts to go really that you feel like giving up, i know. It seems that it can only get worse. But that isn't quite true, MS & in fact most of the de-myelin stuff DOES have this worse/no change/better sort of "pattern" & personally it is this i find hardest to handle; the unpredictability aspect.

I have just moved house, which has been incredibly stressful; physically i had very little help & have been forced to shift furniture etc, climb stairs, lift heavy stuff....honestly, i was literally weeping at times, how i managed it, i don't know. I am now more or less sorted & it's now the backlash has started, somehow i keep going during the crisis itself, no bloody choice when you are alone!

I've lost about 20% muscle tone on my legs. No way is that going to come back. When i wake up, it's because of excrutiating spasms, not just twitches any more. This MAY get better, i've found in the past that sometimes if you push yourself too much, the spasms seem to be a way of the legs trying desperately to exercise the muscle that's left; rather like those slim 'n tone belts they advertise. If you can bear the pain, i think it actually does help to keep what muscle is left in shape. I realise you have to use the wheelchair to do serious getting around, but if it is at all possible, i would say TRY & use your legs at home, once you stop using them, the muscle disappears at an alarming rate!

I've found my arms have got much stronger, to compensate i suppose, if i have to pick something up, i am depending on shoulder strength, not hips & knees. So if your arms are OK, take advantage, exercise them & take pleasure in having one strong part of you!

Yes, if you are sitting around in a wheelchair, you are bound to put weight on. No advice on this, i am distinctly more chubby, except of course for the bloody matchstick legs, i feel i look ridiculous! Thank goodness you have Richard, he sounds a lovely sympathetic person.

It's a question of one the one hand, acceptance of your limitations, in that if you are in a bad way, the only thing that will really help is rest. But when you are in remission, try & build yourself up to be as strong as possible to strengthen your reserves during the bad times.

You absolutely MUST accept that you have to rest when it is bad. Trying to struggle on when you feel like death will not help, it will make it worse. Other people will have to learn to accept this, it is incredibly difficult to make them realise. I had someone say the other day "But Terri, when you walk, you walk quite fast!" i said "Yes, i do, i have always walked fast & now i do it with a limp, but still fast....BUT sometimes i just can't walk, some days i can't get out of bed." but of course, on those days, they don't see me, so most people don't ever get to see the bad days, only the good ones.

my dear. Do keep us informed, but don't feel an obligation. We understand. to you & also to Richard for his support.

take care,

Terri.

I've had no information from my doctor or from the specialist I've been seeing, other than "Don't get over-tired". The specialist *does* want me to go on a short course of steroids to try to kick-start an improvement (his words), but I'm waiting for the results of a urine test to prove I have no infections first. The steroids suppress the immune system, so they're bad news if I have an infection at the time. I also have an appointment with a different specialist in about 3-4 weeks, and he *may* recommend that I go on to beta interferon, which may help.

I agree that the unpredictability is a problem. When I'm well I don't know when the next attack will be, so all I can do is take it one day at a time and treat every day without an attack as a bonus. When I have an attack I don't know how long the attack will last. My first attack was the longest, 6 - 8 weeks, so 6 weeks I *should* be able to cope with. Snag is, this isn't just a long attack, it's the worst so far.

I don't have a social worker and I don't know what grants there are for somebody in my condition. (I don't know whether social workers are bothered about people who don't need long-term daily care, which I don't.) Mind you, there are a lot of improvements we'd like to make to the house, etc., if we could get a grant for them - a bath with handles to make it easier to get in and out, a stairlift, a motorized buggy / electric wheelchair to give me a bit more independence when I go shopping. I'm not "stuck in a wheelchair" - yet - but the distance I can walk before I get tired has dropped drastically, and even at home it's best if I use a stick to get around (very inconvenient on the stairs ). I've applied for a disabled parking badge, and I know my GP thinks I need one, so hopefully I'll get that soon.

I'm sorry to hear that your condition has put you in such a bad way, but congratulations on moving house on your own. If I tried to do that it would take me days, if not weeks, to get everything straight without help.

"No information"

Heard all too often in chronic illness.
You pretty much need to educate yourself.

Even though all they said is do not get overtired.
It cannot be stressed enough. It is the most important and the most challenging. Don't get overheated either.

Parking Badge is essential.
Wheelchairs can give you more by saving your energy whenever possible.
There are walkers with seats (baskets) that are quite handy and light weight. You definitely need a wheelchair and should not have trouble getting one.

Electric wheelchairs-scooters are very expensive and most cannot deal with them alone. It is independance when you are "walking" with somebody or once you get to where you are going. Unless of course you have ramps and access in your neighborhood. They are huge and heavy and are not usually paid for unless you have no ability to walk but that depends on your country ,Dr and insurance.

We are working on our house now. No grants ,no help.
Going into debt for it because there is not much help to be had and usually long waiting lists. I would get worse waiting....

I have mixed conditions but sometimes if all is due to one disease you can get grants through joining and learning about the societies and support groups.
What country do you live in?

Cheerful it is absolutely normal to get depressed.
There would be something off if you did not

It will come and go. Some of it is due to circumstances and some do to the disease process.
The depression will get better.
The disease *can slow any day

I hope you respond to the medication.

It is overwhelming to look too far ahead and that goes for worry too.
Don't waste energy anywhere you do not have to and learn to say no even when it hurts to.(if you haven't yet) It is easy to make all work and no play when you are limited in endurance.
If that starts to happen schedule breaks for leisure and relaxation.

Stairs? Is your bathroom on the first floor or the main?

Don't overtire ,overstress,overheat. When you do -- and you will take it easy on yourself.

Cheerful I popped over to your page.
I see the steroids did not work for you.
Me neither , horrid stuff.
Works for some.

Sounded like you were a bit better so I hope you continue to improve and get a remission.

The steroids have worked to a limited extent and only in certain ways. My speech isn't so badly affected and my writing is now legible. The 'disconnected' spells continue and are as bad as before, possibly worse. Part of the problems I've had are because of the side effects of the drugs. I haven't had a decent night's sleep since I started taking them (roll on Sunday 12th, which is when I stop taking them) and basically I feel like . I could cope with the attack, it's the side effects I'm having trouble with.

As for getting a wheelchair, it all depends on the criteria they set. Richard's dad was given a wheelchair a few months before he died and we haven't bothered to return it. Right now I'm using that when necessary. I think I could cope with an electric wheelchair or buggy, but the one advantage over an ordinary wheelchair is that I'd no longer be quite so dependent on Richard. He doesn't mind pushing me around, but it means I can't go where I want, when I want. As for grants, etc., I don't know what's available. I'm planning to join the MS Society (I'm in the UK, by the way), and they will be able to help there. I may be entitled to something if I can't work any more. I've also been in touch with the local health authority who run an 'Expert Patient Programme', a kind of self-help set-up for people with long-term conditions.

Oh, and our bathroom is upstairs and there's no way we could have one downstairs. We're looking at things we can do to make it easier for me to use, things like replacing the bath for one with handles on the sides to give me something to grip when I get in and out. Unfortunately the walls aren't strong enough for us to fit bars for me to hold on to. I often end up leaning on the window sill for support and I prefer to have Richard around while I take a shower, just in case.

Nearly forgot. As far as dealing with everyday life is concerned, I'm planning to take a 'Carpe Diem' approach. If I wake up with no attack, I'll act like there's nothing wrong with me. (Well, there won't be any obvious symptoms.) If I wake up with an attack but the symptoms aren't too debilitating, I'll do what I can within my limitations, however much that may be. If I wake up with an attack and the symptoms are debilitating, I'll do just a little. I've let some of the rooms get messy during this attack and I've decided to do 5 - 10 minutes work per day. It's not much, but it could be up to 1 hour per week, which is better than nothing.

Excellant plan.
You are being very reasonable in your goals.

Hmm there are some other options for a toilet.

Oh good! - The UK - Yay!
It's better at helping than the US,
I think you could get a motorized wheelchair or scooter.
You should be able to get some form of help with the house changes also.

Smurfles uses a chair and is in the UK, others too.
I can post her U# here if you like.
She is very pro-active and friendly.

*whispers & hopes immigration people don't catch on*

Move to France, move to France, move to France. Best healthcare system in the world, as an EU citizen you can benefit from this. No waiting lists, disability allowance, whilst not wonderful, is far better than UK.

Drawbacks are: many of the towns (especially the one i live in) are mediaeval, cobbled streets & impossibly steep hills. Unless you live in the centre of town, wheelchairs or indeed any movement by someone who isnt 100% fit, can be difficult. Even in Centre Ville (where i have now moved) the pavements are narrow & full of obstacles. Very limited wheelchair access to public places, you are dependent on goodwill, which fortunately is usually forthcoming.

It's ridiculous, the only entrance to the Social Security office is up several VERY steep stairs!!!! The buildings were built long before the healthcare system kicked in.

I'm not getting any better, far from it. Got to go & see tomorrow, i am dreading it. I need to sort the attic out, got visitors arriving , i tried today but had to give up. It is very very hot here right now, which, as you say abbi, makes it all HELLISH even without any physical effort. Honestly, if you are on your own i just do NOT see what the answer is! If i bend down to try & sort something, i can't get up again, but if i don't do this, it won't get sorted, it HAS to get sorted, so WHAT can i do?????? I end up dragging round a trusty little plastic stool & contorting myself around this; jesus, talk about 101 ways to get up & down. You become quite creative i suppose!

Yes, joining the MS Society is a VERY good idea. Also try & get someone to take you to Social services. Contact your local MP & ask "what are you doing to help the handicapped in this area?" Write to the local newspapers. Become an absolute PAIN to everyone who might possibly be able to help! It honestly seems to be the only way; the nerves may die but the skin becomes a lot thicker!

zdt

Me too-
I go to the nuerologists tomorrow
Have mixed feelings about that.
I do like him so no problem there.

I have nervous energy but I am exhausted.

So what is the date of arrival Terri?
Hope you feel better.
You really should be able to call an English speaking person on the phone at that office!poo heads