News has now sunk in...somewhat

[ottawa girl]

Hello from Ottawa, Canada

I was diagnosed in early April. While it was hard to hear the words "out loud", I must admit that I suspected ALS for a few months. I think, I'm not unusual in that regard. The following weeks are a bit blurry - telling loved ones was hard. Thankfully I have superman as my husband and a large french Canadian close knit family and a virtual army of girlfriends. A long time planned cruise to Italy and Croatia was my focus throughout the initial period, and we returned from this fabulous trip last week. Amazing things have occurred and I tell you honestly that since my diagnoses, everyday - I meet an angel disguised as a person. Surely, they were always there - I just did not see them in my previous "normal" life. I am finding great peace in prayers (mine and others) and I am growing more optimistic each day as I muster the strength to live in the moment. Daily mass and a kind pastor are nourishing my soul.

Last week, we attended an ALS vigil on Parliament Hill - but I could not stay as it was too hard facing those people toting photos of deceased loved ones and meeting other folks in various stages of the disease. The speeches (not a happy ending in any of them) by caregivers left me reeling.

I have so many questions to ask you. My symptoms are not obvious - left side - hand. I can move fingers easily - usually- but the cramps/spasms are lasting longer and it takes several seconds now to put my fingers back in place. Most days (and nights) the sole of my left foot aches for awhile, and sometimes the muscles atop the left knee quiver thus leaving me less surefooted. My next appointment with the neuro is not until August. I hope someone can tell me why the fasciculations are intense and non stop one day - and milder the next?:?::?: Somedays, they migrate intermittently to the right side (but this is a recent phenomena) - is that usual for ALS? :?:Sometimes my left arm feels so heavy, I sling it onto my purse for relief. Is that usual?:?: Somedays I feel so tired - I can barely function without a long nap and the next day I feel "normal". Is this usual?:?: My left hand and arm are getting downright bony looking - is this usual? :?:

I have a lot more questions - and if someone would please give me insight as to their early experiences, it would be most appreciated. I don't want to wait until August when I see the neuro to get those answers. (I never thought to ask him about the exact EMG results, though it sounded like I failed a number of tests)

BTW -my family & friends have so far raised almost $10,000 for this Saturday's ALS walk but I still won't be going with them on the walk as I am just too fearful.

Thank you!

Elaine

 

[glupavomomiche]

Hi Elaine!

So sorry to hear of your diagnosis, but glad to hear you are doing quite well and relishing life!

As for the fasciculations, mine seem to come and go and vary in intensity as well. My neuro says that some people notice them more than others... for some people they have to be in an annoying spot or particularly active to grab your attention. And that seems to be the case for me... it's not until I'm lying very still in bed at night or sitting around still that I notice them. So that could be the case for you too.

Fatigue is a constant companion in this disease. I often hear that if you overdo it one day, you "pay for it" the next day! I too notice that I need lots of rest and sleep compared to before!

As for my personal early experiences with this disease... my symptoms were just a clumsy right hand and then foot drop in my right foot. As the weakness became more pronounced and spread to other limbs and the bulbar area, the fatigue became overwhelming... it took about a year or so from symptom onset for this to become a bit of a problem... now, more than two years later, it's a HUGE problem.

As for the EMG results... I finally got one neuro to explain the results to me... it wasn't all that informative or helpful in knowing the results, other than just trying to understand exactly how they pointed to ALS, which is difficult without very advanced medical training!

Hang in there and welcome to the club! It's a very exclusive membership Please ask away... keep in mind many questions you may have have already been asked on here numerous times. It can be very helpful to search through old threads and read what others have shared... you get answers faster that way and it can help you ask better directed questions.

Oh, and congrats on the fundrasising efforts! Don't worry about not participating this year... do things as you feel ready. I myself have only in real life met three other PALS, and they were not much more progressed than I am. Still have yet to enounter a PALS late in the disease... not sure I want to yet either!

 

[ottawa girl]

Thank you so much. You're right about feeling the twitching - especially at night when trying to sleep. I did rscan some posts for the last few weeks ... a little at first and then a bit more.. but I'm not great at navigating the site yet! As I get braver, I'll dig deeper. I mentioned the EMG results, because it seems to me many of the folks posting know so much - and I felt a little stupid with the medical stuff. (funny cuz most of our friends are doctors as my husband is in the medical field)

The big (scary) question is about shortness of breath... do you get that sometimes? At times, I feel like I just ran too fast...and I used to run marathons (albeit not very fast!) up until my knees gave out a couple of years ago.

I know it'll not be easy - thinking of selling our 2 level condo for a 1 level unit... just in case. No point waiting until it's a rushed decision. (I think anyway). It's a challenge walking my 40lb dog... if she pulls, I have to let go!

Glad to know that my ALS is "normal!" I was feeling a little out of the loop - although I do recall my neuro telling us that he will give us lots more info at the next appointment. I lucked out - he's a great doctor by all accounts - and very caring. In fact he called about 3 weeks after the diagnoses - just to see how I was doing. I was very impressed with his level of empathy - the warm and fuzzy kind.

Thanks again, for taking the time to help me out - when you are also facing these challenges. That means more than I could ever express adequately.

Elaine

 

[notgivnup]

Elaine,
Welcome but I am so sorry you needed to find us but glad you did. Your progrssion sounds as normal as most of us, You are in our loop, sorry, But you will find so many loving and wonderful people here to help answer most all your questions. Mine started in left foot, wealness in legs, foot drop, then the other, now left hand an arm weaker. We are all so different but yet somehow the same. Prayers for you on this new journey we share together. {HUG}

 

[mich5]

Welcome, Elaine. Sorry to meet this way but glad you found the site. The twitching does seem to be more noticeable at night or resting. I had it show up in my 'good arm' on occasion when i was first diagnosed as well and it is scary because you wonder if/when it's 'going there'. But, the funny thing is, after a while you won't notice it. Like Glupamovomiche mentions, I only notice it now if it's in an annoying spot or particularly 'active'. Good to know you're seeing angels every day. The Search button here is great but it took me quite a while to really search much as I had to 'take it slow'. Go at your own pace. I will say quinine helps the cramping. i drink tonic water but I've heard in Canada you can purchase quinine pills over the counter.

 

[ottawa girl]

Thank you Mich -

I appreciate you taking the time. It's a most disconcerting condition isn't it? I am ever so grateful for the support I am receiving from my family - but I needed a "safe place" to verbalize my thoughts and concerns openly. It's hard to hold things in - at the risk of making a loved one sad. I don't want to suck the life out of people I care so deeply about. Sometimes it's akin to walking an emotional tight rope of sorts.

Sure am happy to have signed up on this forum - it took awhile to get the guts to do it!

Hopefully, I will in turn and in time be of assistance to someone else.

Have a great day - warm sunshine here today - so I'll go get me some of that!:razz:

 

[CathyP]

Welcome I too had "lurked" on this site for awhile before I signed up. I guess signing up makes it all more "real" and I tried to avoid that for a bit.
My symptoms started with "spraining" my right ankle ALOT. I didn't notice it was weak. I just thought I was stepping in a dip in the yard or not putting my foot on a rug just right. I did notice there was NO pain everytime my ankle would turn over and thought that was strange. The weakness spread up my right leg, then my right arm and hand, now my left ankle and leg.
The thing about ALS that bothers me ALOT is that is takes SO long to be told you have ALS. I wasted time & money for over a year before I was told for sure it was ALS. Being referred from doctor to doctor to doctor & ALL the different test... I even wasted money on a chiropractor. Since there is no test for ALS everything else has to be ruled out.
I have experienced so many emotions and have felt so overwhelmed with all this at times. Reading everything I can and hoping I could find ANY thing else it could be.
This site is AMAZING. It has the glue I need to help hold me together some days! I get so much encouragement from reading the posts!
Since you are in Canada I don't have a clue what type of services you can sign up for. Sign up for anything and EVERY thing you can to help you concerning ALS.
You are NOT alone in this. We are all here with you and just one click away!

 

[amyst]

Welcome ottawa girl, I was diagnosed in late march and it's all just starting to sink in with me also. It is great you signed up up this forum because so many great people are here for support and endless information.

 

[momap53]

Welcome to the forums. I'm so glad that you're finding what you need here. I lurked for a long while before joining too. There's so much good info in the archives. This forum has been a lifeline for me.

Fasiculations are random for me still, some here, some there, sometimes it seems they're almost everywhere, sometimes barely noticeable, other times I'm very aware of them.

Fatigue. WOW! This has been a chronic complaint for me since right before the first symptoms were noted. Busy one day then rest the next.

You may be seeing some muscle atrophy in your left hand and arm. I started out with R foot drop with weakness progressing up the leg to my hip. Meanwhile the left leg was slowly weakening as well. In the past few months I've started noticing the weakness in my R hand and arm and the muscle wasting is now quite noticeable in my hand.

If you have footdrop don't hesitate to get AFOs when your doc orders them. They will help to keep you walking safely for a much longer time. Falls can be deadly or immobilize us long before the ALS does.

Check out some of Wright's old posts for more info on the EMG. He's quite reliable.

It's wonderful that you have a very personable and caring Neuro. That will make this journey so much easier for you.

I'm so sorry you received a diagnosis that led you to us. You'll find a wealth of information, comfort and friendship here. Good luck on your journey. You won't be alone.

With ALS it's always an excellent idea to plan ahead for future needs and to have equipment on hand before it is critical.

 

[HelenL]

Hi Elaine, welcome to the forum family... I'm like Cathy in that I kept spraining my left foot and thought I had "loose ligaments" which is why my foot kept turning on me. I don't notice many twitches during the day, but do at night... especially if I put my hand or something on my stomach and my muscles jump. Between the budha belly I'm getting and that, I almost feel like I should be pregnant.

There are all kinds of supplements that we use, from Creatine, Vit D, Vit B-12, along with alternative methods for controling pain, etc. Search the site, look into things for yourself, ask us for our opinions, but in the end choose for yourself what you think may help you. For instance, I use strong magnets for cramping and pain, and do Reikki after my SIL taught me... I feel they help me, but of course, not scientific at all!

A positive attitude is the best way to go, and its really hard sometimes, but then an angel in disguise comes along and makes your day. My angels today are my Mom and a friend from church (who was also my 4th grade teacher lol), Marge.

 

[pvtpilot]

Hi Cathy,

I noticed in reading your msg that you too had issue with your right ankle and not feeling anything. I'm also looking for answers as I have symptoms yet even after May 1st test reported abnormal EMG the Neurologist couldn't explain my muscle twitching all over. He said I didn't have ALS though. Yet my symptoms are weakness in legs, loss of muscle, muscle cramps/spams in both lower legs. Something is definitely wrong as it seems to be progressing as my right ankle has begun buckling on me and like you haven't felt any pain when this occurs. I'm surprised I haven't twisted it yet. The most recent concern was over this Memorial Day weekend when I took the kids camping and got on my bike. Both upper thighs felt so week and experiencing burning sensation as if I was pedaling up hill in 10th gear yet on was on level ground. I thought this would subside but everytime I'm on bike it's the same. Any advice on who to see as I didn't have alot of confidence in the Neurologist I was referred to. thx

 

[glupavomomiche]

Hey again Elaine,

The out of breath thing is cause for concern. I have asthma, so when this started happening to me over a year ago, I attributed the problem to that. However, when I mentioned to the neuro that I woke up with a headache every morning and didn't sleep well at night, the warning bells went off and she sent me straight down the hall for some pulmonary function tests. My FVC is ok, but the maximum inspiratory pressure was no bueno... so bad, in fact, that she was able to prescribe a BiPAP for me immediately without waiting for the sleep study business. It helps A LOT! So you should mention this problem to your doctor and make sure they keep an eye on those numbers and get BiPAP for you when you need it... who knows, that could be now even! And it's not nearly as scary or weird as it sounds. If you truly need it (which most PALS need it and they say the earlier you get it, the better), it will make you feel so much better you will not mind using it at all!

Hang in there!

 

[joni51]

Hi Elaine, I am so sorry for your diagnosis, but glad to here you are trying to be positive. Try to live each day in the moment, and we will be here for you...

 

[dragonflydi]

You have a wonderful attitude, Elaine and you've chosen the best place to get answers. Everyone who has already replied has given wonderful advice. My husband was diagnosed in 2007 and he's still talking but uses an external vent to breathe most of the time and he has a power wheelchair. There is no "normal". We feel blessed that his ALS is moving so slowly but we've certainly run the gamut of emotions and been through many changes. I'm not an expert, but I'd be glad to answer any questions about breathing apparatus since we have tried a few different kinds and about pressure sores, which we have under control. Bon courage! Diane

 

[HelenL]

I must have said something naughty, I could have sworn that I posted earlier! Oh well...

anyway, welcome to our forum, I also started with left footdrop... still going strong, well as long as I don't have to walk at all. But check out the breathing, I don't have any issues with that, but do have an issue with my cough... so learned about cough assist machine, and my wonderful clinic had one delivered to me a few weeks afterwards.

Good luck, and keep up the good attitude.