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anderkling

Distinguished member
Joined
Dec 1, 2014
Messages
273
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
My name is Charlene. Yesterday I received my diagnosis of ALS. I had written on this forum in November, concerned about symptoms of leg weakness, tripping and falling. Some of you wrote back with words of encouragement and promises of prayer. Thank you.
My GP referred me to two neurologists. I have seen three, two of whom are ALS specialists. I have had all the tests, EMG, MRI, CT, etc. I'm just reeling, and can hardly fathom the news. Sometimes I think I'm falling apart. Two months ago I was an active 58 year old teacher, working full-time and managing a home. I am married with two teenaged children. I live in Canada, just north of the Washington State border in British Columbia. I asked my neurologist to test for Lyme, and he gave me the Elisa test, which I understand is not very reliable. I'm thinking of pursuing a more thorough test, perhaps in the US. I know it's probably a long shot, and unlikely. Does anyone have ideas about this? My condition has deteriorated significantly in the past month and I can barely walk. I just got a liver test to see if I can go on Riluzole/Rilutek.
 
Oh Charlene,
I am so sorry that you are here. I have no words of wisdom with regards to the testing for Lyme disease, but I pray that is what it is.
My 45 year old husband was diagnosed in June and has rapid progression ALS. He is still mobile, but has very little use of his arms, has no neck muscles and is beginning to have trouble with breathing and swallowing. It has been over 6 months and I still often feel like I am living a bad dream.
The people here and the discusions have certainly been helpful and informative.
Prayers sent your way.
Cheryl
 
I am sorry. I had hoped it would turn out differently.
Re Lyme. You will and probably have found there are people who believe much ALS is undiagnosed Lyme because people are not properly tested. Some go to so called Lyme literate doctors and get testing from a " special" lab where pretty much everyone is positive. They are then prescribed large doses of antibiotics and are told they will get worse for a while as the lyme works its way out of the body. As you can probably tell I am not a believer.
See this page on the CDC website on Lyme testing CDC - Diagnosis and Testing - Two Step - immunoblot - Lyme Disease

I am sorry you are having trouble walking. Please stay safe. If you need a walker,a brace or a wheelchair use whatever so you do not fall.
Welcome but so very sorry you must be here
 
I am so sorry to have to welcome you.

You probably already know this is a great place. I have found lots of support along with folks willing to share their knowledge to help make the road easier than it would have otherwise been.

A decision for additional testing is very natural at this stage. I see no harm in getting an additional test for Lyme disease, but would not be very hopeful it would change the diagnosis. I am still a bit in denial about my diagnosis, so can relate to the desire to pursue the potential for other causes. I don't believe it is harmful to do so, in general; but be aware that everything we do takes energy, and energy conservation is pretty important for us.

Steve
 
Greetings, Charlene!

I'm truly sorry that you have to find yourself here. This is a journey that none have asked for... but one we ride nonetheless. If it has to be ALS, I don't know of a better place to ask questions and get good information then here. Most of us are living this... either as PALS or CALS. My wife, Darcey, was diagnosed with CIDP at the age of 58. At 59 she was re-diagnosed with ALS. She is now 60 and has been unable to walk for about a year, now.

Why not turn the stone and see if a better answer is under it. We did. We tested for Lyme... and any and all other tests that might give a different result than ALS.

The first weeks after diagnosis are a whirlwind of emotions. For many, those emotions continue... we simply become better at understanding and working with them. Knowledge of what to expect and how to stay ahead of this disease can also help... but it is not an easy pill to swallow. Most importantly, I believe, is that you've just introduced yourself to a group of new people who are quite likely to become extended family. While we would rather that you not have to be here, our arms are open wide in welcome and support. Ask questions... share those emotions that no one else seems to understand... and let us help give the hand or shoulder should you need it. And please don't try to take it all in at once. You will work much better taking it all a day at a time. My best to you and yours...

Jim
 
Sorry that you have to be here Charlene, it is a great place to vent or ask questions.

Janie
 
So sorry to have to be welcoming you Charlene.

Please DO NOT FALL - you won't heal well and it will only speed up progression.

You are going to have a lot of emotions ripping through you over the next month in particular, we all know this well and the support here is invaluable.
 
Welcome Charlene, big hug from across the ocean.
Love Gem
 
Welcome to our family, Charlene. I'm so sorry that you find yourself back here, but under the circumstances there is no more supportive group of people. As you've read, the whirlwind of emotions is normal. I think it calms at times, but then picks back up. Come here to vent--it's safe and we DO understand.

My husband is 57 and was diagnosed last January (30th...the day is forever etched). So young...so difficult. It's easy to ask why. Every time I do I hear "why not" echoing back to me. Most days I've given that up and right now we are LIVING with ALS--as much and as long as possible. Denial is natural, but don't let it get in the way of preparing and obtaining the equipment you will need--before you need it. The fewer crises you have the more you can enjoy what you have now.

Hugs to you and yours.

Becky
 
Welcome to the club no one should have to join. You are among friends. As a fellow Canadian you will find out what a wonderful thing socialized medicine is. The extensive investigation to reach diagnosis would bankrupt most people without it. I can't imagine having this and having to deal with insurance on top of it. I find dealing with today and not looking too far ahead works best for me. Denial can be a happy place.
Vincent
 
I just want to say my heart is warmed by these thoughtful, caring responses. The comfort is particularly encouraging coming from those who know exactly what I am going through. What is particularly frightening to me is the rate of progression in just two months. I can walk a little bit with a cane, and I have a wheelchair. I am finding I need to conserve my energy. I have pain in my leg, and my neurologist prescribed Quinine Sulphate. Does anyone else take this? Thanks for the tips about Lyme disease. On the internet you read so much about ALS being diagnosed, and I find myself searching and searching for some other diagnosis, something with treatment and hope. It's hard to know what's true and what's not true.
 
Look at alsuntangled they have, under completed reviews a paper on "when als is Lyme"
 
I've had Lyme, Charlene. My husband had ALS. I very much doubt you have Lyme and would not spend a penny on other tests. However, if the Canadian system pays for the Western blot and you did not have the C6 ELISA, you could have one or the other for your peace of mind. Lacking evidence of a clinically-validated Lyme-misdiagnosed-as-ALS case report, it appears that legend is part of the overall Lyme-for-profit infrastructure.

We will be here to help you adjust and act on your ALS diagnosis, which I know all of us are sorry beyond words to hear.
 
I have pain in my leg, and my neurologist prescribed Quinine Sulphate.

Charlene, I was told that Quinine Sulphate is not available in US, they told me to drink tonic water for cramps.

Janie
 
Charlene, as you live in Canada you should definitely take advantage of all the home care and financial assistance (for equipment) that is available through your provincial health care coverage. Also contact the ALS society in BC for help and support. My aunt was diagnosed with ALS in Vancouver, and she was able to benefit from various forms of assistance – although, sadly and unexpectedly, she died only four months after diagnosis. I was diagnosed (and live) in Ontario, and found that lots of care is available through the Ontario health card.
 
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