Status
Not open for further replies.

morningdew

Active member
Joined
Apr 22, 2010
Messages
50
Reason
PALS
Country
AUS
State
WA
City
WA
Hello, everyone,
I 've been following your forums for weeks, but have only just felt ready to take part.
I'm going into hospital for tests on 27 June, so the doctors are taking it seriously. I went to my GP about my cramps, weak feet, and fasciculations, and he had me booked in under a neurolologist who specialises in the motor neuron diseases by the following day.
I've had very bad cramps for about a year, experienced weakening feet at the end of February, started fasciculations soon after that, especially noticeable visually on the soles of my feet, but all over both legs.
Now I keep telling myself it's my imagination, but my arms seem strange, especially the left one. It didn't want to wash my hair this morning, and it aches and tingles a lot, in varying places, and feels heavy from the shoulder. I'm noticing a few twitches in my hands/arms and ,strangely, my abdomen. Surely it would be unusually fast if my arms go already?
I'm 75, and ready for what eventuates.I've had a good life. (But of course I'm scared.) I'm so sorry for younger people who are suffering these dread diseases.
I have seen one specialist already, a general physician, but he told me a) If it was ALS I wouldn't be able to feel the fasciculations b) If it was ALS it would be symmetrical, and my left foot is worse than the right c) If it was ALS the fasciculations would be so frequent he wouldn't have to wait to see them.
My reading makes me feel he may not be right? Anyway, I'm not really reassured by what he says.
I'm speaking from Australia. I have been finding find you all so helpful even though I have been a silent listener. Thank you.
Joan
 
Hi Joan and welcome to the forum from a fellow Aussie.
Re your symptoms
I cannot add much to them except to say mine were not symmetrical, nor are they now. Mine started in one leg/ foot and hand and have progressed from there.
Many people i believe are the same.

I am pleased you are going to see a specialist, the wait is the killer for us here though. I waited app 3 months to go to hospital for my tests.

Others might post their thoughts here as well.

cheers
Peter
 
Hi Joan,
I hope that one of the other causes of which there are many will prove to be your diagnosis... but I agree with Peter. One side (foot) began, progressed...followed by the other. That said, it can happen in so many combinations and begin in any area. There are slow and fast progressions, and sometimes there is slow for a time followed by fast, and vice-versa. I did have cramping, but honestly cannot remember how it tied in with the weakening, due to mine being so gradual. Fasciculations followed, however. I'm fairly sure of that. The tricky thing is that now I have the fasics nearly everywhere except where they first began, and in my head. So, it's hard to judge which comes first. We probably vary in the timing of fasics and cramps, too.

Oh, for the record, I believe I also waited about three months for the first tests... which were repeated the following year, when there was enough EMG information to diagnose (just have to wait for all else to be ruled out and the progression to show clearly, which varies widely). Joan, all the best wishes for your diagnosis. Ann
 
Joan, I don't want to concern you any more but your GP obviously knows very little of ALS. To a): It is entirely possible to feel fasciculations. I quite often feel mine depending on location and strength. To b): It's Amyotrophic Lateral Sclerosis. That's lateral as in: of or relating to the side. It is by definition not symmetrical. I believe c) is true but can't speak to that with certainty.

Now having said that there are many things which can produce this type of symptomology and they are both more frequent and benign. Try not to get worked up until you get to see someone who knows what they're talking about. ;)
 
Hi Joan, What sort of testing have you had so far? i.e. lumbar puncture, EMG, nerve conduction studies, blood work?
Laurel
 
Thank you so much for replying to my post, all of you. it's certainly a lonely situation to be in. When you folk were awaiting diagnosis, did you tell people?
Or is it better to wait till you know definitely?
Another question I have is, what happens to you if you have no-one to look after you? I remarried six months ago. We're both in our mid-seventies and thought it made sense to share a house and our lives. But it's not like being with a long time partner. I couldn't do this to him! Also, though I have a loving family of three children, they are all at the zenith of their careers, but are not monied. I couldn't expect them to look after me. Most people who post seem to have spouses or children who take care of them.
Peter, good to speak to another Aussie. I'm in the country too.
To the rest of you, yes, you confirm that this general physician did not know about ALS. He's sent his report to the neurologist I'm waiting to see, so may make a fool of himself.
I have my EMG at the end of June, and have told myself firmly that if it's clean I will believe it.f not, then I'll take it from there.
My love to all of you.
Joan
 
Joan, not much to add except well wishes, and to reiterate that there ARE many other things it can be. I hope the specialist finds that to be true for you.
 
When we were awaiting diagnosis, we just told people that it was on the table. It was too hard to try and deal with the possibilities without some support. I checked on the ALS Association in Australia, and here is the information that I found. You might want to go ahead and talk to them. I was in touch with our ALS Assn before the diagnosis. The information they gave me was really good.

Motor Neurone Disease Association of Australia Inc.
Carol Birks and David Ali, Alliance Representatives
Ralph Warren, Chairman/President

MND Australia
P.O. Box 785
Gladesville NSW 1675
Australia

Tel: +61 2 9816 5322
Fax: +61 2 9816 62077

Best of luck to you. I certainly hope they find it to be something else.
 
Hi Joan,
Re the telling of your condition to people.
When I was going through the tests etc. (I had a diagnosed of Parkinsons for app 10 months before my diagnosed of MND) and symptoms for app 2 years before that.


If your symptoms are visible to people, then some of your friends might make comment, many wont though, this is just the nature of people.
Then all I did was let people know that I had a medical condition that they were unsure what it was and I was having tests to find out exactly what it was.

When i found out what I had, then when people asked I told them. By then I had developed a limp, which was quiet visible. As i am still working I was very open with my condition to them and as I live in a relitive small town it didnt take long to get around.

Re your support through this time, regardless of the outcome.
You might be suprised at what support your family will give you, including your spouse. Every situation is different as you have probably gathered from some posts here. Some families tend to shy away while others have great support from family members, who before diagnosed didnt have much involvement at all.

Joan, the main thing is to enjoy life regardless of the outcome.

cheers
Peter
 
Hi Joan

I am also a fellow Aussie. Re telling other people, the problem so to speak with us was that my husband was discharged with "probable" motor neurone disease. The drs did not think an EMG was conclusive and that other symptoms had to "develop". Then we saw a second neurologist who said the indications were there but it could be something that mimicked mnd. We then went to a specialist clinic at Calvary Bethlehem and they said he had lower motor neurone symptoms but not upper. Our probable diagnosis was in Jan 09 and it was "confirmed" 27th November 09. However, by this time his respiratory was 30%, on Bipap and in a wheelchair and the hands and arms had wasted. So the problem with telling people and the agony of it is that you are in limbo, like I think I have this horrible terrifying disease but I may not, but it looks like it. So we told people that it was probable but there was always the agony of hope and hope for our friend, that it wasn't. So be prepared that you may just get a probable diagnosis-I think they do that to cover themselves.

In terms of your new relationship, give your partner the benefit of the doubt. In our case we had only met 8 months before the probable diagnosis. We have since married and we are in this together. I don't know about services in your state (can only provide the exampleof our situation )but in Victoria the motor neurone disease assoc has been a real help with equipment. They supplied an electric hospital bed, shower chair, nebuliser, electic lift arm chair etc. The aids and equipment program run through the Royal Melbourne hospital has provided us with both manual and a reissue electric chair, roho cushions and shower commode. He is under something called and ISP package through DHS where motor neurone is a special category and we got the ceiling hoist, podiatrist, massage therapist and a quantity of carer hours through this. Melbourne City mission palliative care provided a one off grant of $2,000 which we used for back door ramp and portable ramp near garage. Yooralla has a service called comtec and they provided him with a control he can press with his foot to change TV Foxtell and also a remote mouse for the laptop which is on a tv table above the bed. I don't know what would be available to you but perhaps start investigating as we had no idea at the beginning that these things were available.

Re fasiculations: we didn't know we had them til my husband said the drs in hospital keep mentioning this word. So I googled it and found what thery were. When we looked at his chest we could plainly see them ripple across and later on I could see and feel them so just don't know how we missed them in the first place. For us my husband had incredibly painful cramps months before the diagnosis. He said it felt like somone was tearing the muscle from the bone, we just thought he needed to take magnesium tablets!. I thought though he had a respiratiory problem because he had this light niggling cough that would not go away, so organised to see a specialist. He was very thorough and must have had a suspicion because he organised the EMG which is what started us down the path to MND.
My best wishes to you

Take care

Chris
 
Hi, Peter,
Thank you for your advice.
I have a lot to enjoy in my life. I have my children and granddaughters aged 17 and 18 who although I have moved to the country keep in close touch. Email is so good.
I have two dogs that give my a lot of amusement, a miniature poodle and a flat-coated retriever, both black, and my new husband has a farm dog that looks like a dingo.
For myself, I am working on a PhD thesis in Theology, so it isn't too hard keeping my mind off my health - or it shouldn't be. Thoughts do inevitably creep back to what may lie ahead. I feel I need to get on with my thesis really fast just in case, but it isn't always easy to concentrate. It's getting better though as time passes.
My left arm puzzles me a bit, because it feels a bit like tennis elbow, but tingles - the hand too - and doesn't seem typical of it. The upper arm feels heavy. I believe tingling might be a case against ALS?
What stage are you at?
Cheers, Joan:)
 
Hi Joan,

My husband just went to an orthopedic doctor for the tingling and pain in his left arm. The doctor diagnosed tennis elbo and gave him a steroid shot. He put the elbow in a brace, and it is much better. Unfortunately, the symptoms you describe are not atypical of ALS. I have found over the course of the last year that some things are typical, but each individual often has symptoms unique to them. Trying to keep up with everything is a full time job!
 
Chriss, thank you so much for taking the time to write so much and so clearly. I can't believe how much help there seems to be! It certainly is reassuring!
it was my cramps that first took me to a doctor. They have been excruciating for the past year, seeming never-ending! Weakness and fasciculations came later.
Joan
 
Hi, Missy,
Your husband must have had quite a recent diagnosis. I'm so sorry!
About the tennis elbow, I'm wondering if weakening muscles strain easily?
Joan
 
Thank you, KTMJ, for your good wishes. Joan
 
Status
Not open for further replies.
Back
Top