Leading towards MND

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Re: Leading towards MND

Postby DoubleD on March 28th, 2014, 9:30 am

Yeah I was pretty tired when I wrote that post. Kind of buggered it up. I went back and cleaned it up

I am not an expert at all but this just does not sound like an MND. It is moving to fast. Has to be a virus or something like Lyme. Keep getting tested

If I see that guy at the gym I will ask the name of the disease

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: Leading towards MND

Postby christo on March 28th, 2014, 10:31 am

If you have copper deficiency then it might fit your symptoms. Copper deficiency is known to cause neurological symptoms. We are all with you, crossing fingers that it's benign or a least treatable. Keep us updated !
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Re: Leading towards MND

Postby TDenver on March 28th, 2014, 10:37 am

I'm hoping for that too. I have noticed some slowing down in my right hand in the past few days. It's a lot stiffer than the left and I can't open and close it as fast.
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Re: Leading towards MND

Postby Little Lost on March 28th, 2014, 7:47 pm

I am so so sorry this has happened.
Last edited by Little Lost on April 4th, 2014, 5:44 pm, edited 2 times in total.
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Re: Leading towards MND

Postby TDenver on April 4th, 2014, 5:34 pm

I wish I didn't have to report this but I've been diagnosed with mnd, possible als. It's at the best hospital in the world for this. Thanks for all the support here, I'm moving my story to another forum. Should my situation change I'll be sure to report it.
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Re: Leading towards MND

Postby Little Lost on April 4th, 2014, 5:47 pm

I am so sorry this has happened. We were all hoping for a different outcome. Looking for some other explanation.
Hx
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Re: Leading towards MND

Postby ShawnW on April 4th, 2014, 6:32 pm

I'm so sorry to hear this...my prayers are with you and yours.
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Re: Leading towards MND

Postby wjjw on April 4th, 2014, 7:01 pm

Hey TD, sorry to hear this. I can only imagine what you're going through, and only because when I started with these weird symptoms 9 years ago, before finding this site, I briefly thought that might be my fate (as many of us have). My perspective on life changed, and I looked towards the univeral forces that "shine light through the darkness," so to speak. If an idea is real, and universal, and has any real value, it will help us at our worst times, not just when things are going well. I hope you find those things, and if you can't I'm sure they will find you, because they are real. Sorry you and your family have to deal with this, and wishing you the strength to get through it.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Leading towards MND

Postby Yuliasir on April 4th, 2014, 10:40 pm

Sad to hear that, hope always dies the last...
Join to all fellows in praying about you and your family.
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Re: Leading towards MND

Postby Xina535 on April 5th, 2014, 3:03 am

TDenver, I am very very sorry. I don't really know what to say. I will be thinking of you and your family often and always hoping for the best, and with as much laughter as possible! Hugs from Germany.
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Re: Leading towards MND

Postby TDenver on April 5th, 2014, 11:15 am

Thanks All. I am hopeful, my diagnosis is "possible" so I've been given a hope and I'll go on that, no fibrillation's on my EMGs yet and I intend to keep it like that. I have a lot of love around me and faith, I am not sorry for my diagnosis, I am thankful for my life.
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Re: Leading towards MND

Postby Gamindsoc1509 on April 6th, 2014, 4:59 pm

All the best TDenver... I really hope it all works out.

To all the others, this thread was obviously a little confusing and the symptoms didn't really seem to be in line with ALS. I am surprised there isn't more anxious raging considering this thread has 2000 views.

At the end of the day, I wouldn't stress. As per usual, this was different from the standard BFS case. (Benign diagnosis, get the fk out of my office) His doctors suspected something was going on and aggressively tested to find out what it might be.

Hopefully whatever it is, it isn't MND.
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Re: Leading towards MND

Postby Little Lost on April 6th, 2014, 8:13 pm

Hi Gamindsoc

I don't think there should be any raging anxiety in this part of the forum, on this man's topic. Decorum and respect is what he deserves. TDenver has conducted himself with dignity, and his courage in all this has been outstanding. This man has young children, a wife with ms and is now facing the possibility he himself may be ill. Despite this he talks about laughter and facing things head on etc.

I guess most members will feel this is a time to offer him support, not to use his case as a stage to get up and voice our fears. Not here and not now. This is a person that started this thread, as I said a father, a husband, someones son, someone who came here for advice. Someone whose profile didnt quite fit bfs, so I don't think many people would be so shallow or tactless as to use this very thread to debate bfs vs als.

TD, my thoughts are with you. There have been a few cases on here that have been as far up the ladder as probable (I.e. one up from possible), and have ended up being fine. I hope this will be your outcome, your story also. I will be thinking about you, and I know if your kids were old enough to realise what you are going through, they would be so proud of their dad for maintaining such a good attitude, proud of your strength.

Hx

Perhaps you could pop in some point in the future if it is of any use to you.
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Re: Leading towards MND

Postby TwitchyDoc on April 7th, 2014, 6:03 am

TDenver, I am verry sorry for your MND diagnosis and my thoughts are with you. You are an incredibly brave person and I wish you the best.

This is not public yet but I will tell - in one month a world-wide platform will be launched to connect people with ALS, hospitals and research centers in order to be always informed about any trials and easily be able to participate and share data with doctors and researches. The project is called Tricals. I am really happy I was present on their presentation because finally this beast is getting the attention it deserves.

Good luck, stay strong!

Docen
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Re: Leading towards MND

Postby veryworried123 on April 7th, 2014, 10:06 pm

can someone please summarize what the main differences were between this case and many others that experience the same symptoms
was it just a dirty emg? was there also things spotted on the clincal? i read that there was no weakness but still MND and ***

thanks
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