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lola64

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Hi everyone-
so I have some questions. My father was diagnosed in June with possible ALS (lower onset), but the neuro agreed with monitoring his progression that it would be useful to obtain a second higher opinion. So off we went to London, Ontario, and the chief researcher for ALS in Canada told us that he doesn't believe this is ALS as of right now. He is unsure of what it actually IS, but is some form of MNN or MND. No conduction block was FOUND by testing, but he said that doesn't mean it is not there. I believe there was something technical said about the neuron axons are not actually destroyed, just not firing. So now I'm confused, bec I don't know if I should be relieved or if it is basically the same thing? He explained that in the UK, MND is termed the same as ALS, but in North America they are differentiated as separate diseases. And not that he even has MND, but that something motor- neuron related is defiantely happening here (he has progressive muscle atropy in arms, hands, legs). I know there are no definitive answers. However, dad is on immunoglobulin IV for 6 months, and is two months into his treatments. Basically, it's a wait and see if his body responds to any treatment. Has anyone out there happened to have any success or heard of any success in reversing disease progression due to these treatments?
Thanks, and my heart is still with all of you touched by this disease.
 

TipaCow

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Lola,

First off, I'm sorry about your father. ANY motor-neuron disease is dreaded. This may help explain MND.

Different types of MND
There are four main types of MND, each affecting people in different ways. There can be a great deal of overlap between all of these forms, so, while it is useful to separate the various types of the disease, in practise it is not always possible to be so specific.

We talk here about life expectancy so you may not want to read any more at this stage
Amyotrophic lateral sclerosis (ALS)
This is the most common form, with both upper and lower motor neurone involvement.
This form of the disease is characterised by weakness and wasting in the limbs. Someone may notice they are tripping when walking or dropping things. Average life expectancy is from two to five years from onset of symptoms.

Progressive bulbar palsy (PBP)
Affects about a quarter of people diagnosed, and involves both the upper and lower motor neurones. Symptoms may include slurring of speech or difficulty swallowing. Life expectancy is between six months and three years from onset of symptoms.

Progressive muscular atrophy (PMA)
Affects only a small proportion of people, mainly causing damage to the lower motor neurones. Early symptoms may be noticed as weakness or clumsiness of the hand. Most people live for more than five years.

Primary lateral sclerosis (PLS)
A rare form of MND involving the upper motor neurones only, causing mainly weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Life span could essentially be normal, although it may be life-limiting, depending on whether it remains as pure PLS or develops into ALS.

From: http://www.mndassociation.org/life_with_mnd/what_is_mnd/types_of_mnd.html

Best Wishes and God Bless,
Dale
 

lola64

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Thank you Dale, for that information and the link. It's serving useful to see this other spectrum just outside of ALS. We were so focused for so long on the first diagnosis of ALS, that there is another world of information I see that we now need to consider. I appreciate your prompt response to my questions:)
 

Al

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Hi Lola. I believe there is someone that has posted here recently about success with the IVIGG treatment. Have you contacted the ALS Society in Corner Brook or the Support Group in St. John's? Either one may be able to help with information and support. Go to www.als.ca to get the numbers.
AL.
 

pmbenb83

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Hi Lola,
I'm sorry that your father is also having problems with this. I fully understand what you are going through. My husband recently had his first IVIg treatment and is showing some improvements. He is having the treatment to help the doctors figure out if he has MMN or ALS. If he does well with the treatment, then it will be MMN. If it does not work, then it might be atypical ALS. So far, he has more range of motion and strength of his right arm, which has atrophy and severe weakness. Today, he mowed the grass, bagged leaves and still has energy left. We are still trying to keep our emotions guarded as not to get too excited just yet.

One test that his doctor relies on to know if he is improving or not is a CPK blood test. If the CPK is elevated, it means muscle is still wasting. If the CPK level goes down, then it means he is no longer losing muscle or has slowed down losing muscle. He will go back for another CPK in mid December.

How has your father been doing with the treatment? My husband was extremely sick for 3 days. Any signs of improvement for your dad? I truly hope this treatment works for your dad as well as my husband.

I wish you and your family the best for a positive outcome with this treatment.

Take care.
Pam B in Va
 

lola64

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Joined
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Messages
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06/2007
Country
CA
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Newfoundland
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St. John's
Thank you Pam and Al;
Al- I have been in touch with respect to registration, checking on support group times, etc., but as of yet still have not made too much progress with contacting the local ALS chapters on the island. It is something I will look into further however. It's good to hear there are others on this island that are having some good fortune!

Pam- I'm excited about your husbands progress, I hope you continue to see strong improvements. So far, Dad has undergone two rounds of 3 day treatments, and says he is noticing some small improvements, however because I am not around him 24/7 it is harder for me to see, but I do notice an increase in his energy levels recently. We are hoping and praying these improvements continue to a tangible vantage point so that we have a better idea of where this might be going.
I'd be interested in hearing of any further progress that you might make, and I will be sure to keep you posted on ours. Good luck and thanks for the encouraging thoughts.
 

lola64

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PS- Pam, I also recall Dad saying last week that he has noticed an increase in the range of motion of his arms as well, along with his slight increase in energy levels.
 

jean

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Hi Lola
When I first was investigated it was thought for a while that I had MMN and i underwent IV immunoglobulin treatment. My failure to respond was an indication that what I had was not MMN and later I was diagnosed with PMA. Response to Immunoglobulin therapy is part of the way the condition is diagnosed and worth going through , because it can make a big improvement for those who do have MMN.For those of us who present with only lower motor neuron symptoms , it can be an even longer road than usual to diagnosis. I hope that it proves to be MMN for your father, as it tends to be very slow in prgression as well as being treatable.
best wishes
jean
 

lola64

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06/2007
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Newfoundland
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Thank you Jean-
this info means alot to me. The last few months have been quite a rollercoaster, and it helps to know others are going through the same sort of thing. Emotions, relations, physical challenges for everyday things the rest of us take for granted, lifestyles being flipped upside down. Not having a definate diagnosis, though it leaves room for more hope for my family, also it some weird twisted way, is still unsettling. I'll be sure to keep in touch with you guys to let you know how this progresses, etc. I'm sure I'll have lots more questions sometime soon. Hope you all keep strong!
 

Peg B

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Hi Lola,

I have also been DX with Atypical ALS or MMN. I have been on IVIG since Jan 2007. I was first DX with ALS on Oct 31, 2006 and then got the two DX on Dec 7. I get treatment at home every two weeks for about 6 hours. My initial dose was given two days in a row.
 
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pmbenb83

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Hi Lola,
I'm just checking in to see how your dad is doing. I hope he is getting stronger and making some improvements.

Next week will be one month since my husband's first treatment and I think he is starting to get tired easily and his range of motion comes and goes again. Next week he will have his CPK done, so I guess that will give us a better picture as to what is going on inside of him. If the IVIg treatment just keeps him like he is now, we will be so very happy. We'll take whatever we can get at this point. :)

Take care.
Pam B in Va
 

lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
Hi Pam- sorry for the delay in replying, I was out of town there for a week or so.
Dad just finished the second day of his third treatment (round) today. So far, he says he's noticed a small improvement in the size of the muscle of his right hand between his thumb and index. He's also on an upswing in energy today (after a low-energy weekend), but smiled when I asked him if he's noticing much more improvement, just said 'I'm not saying anything yet'. God love him!
Hope your husband is doing well. I'll send out some positive vibes for good results. We're still technically without diagnosed, I suppose.. he has another neuro appt in Jan. and I guess that will be the follow up bloodwork results, etc. I try to keep things in perspective, but do you have moments where your thoughts just get the best of you and you just lose your grip for a few minutes? My poor boyfriend for putting up with me!
Best regards.
 
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