Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby garym on November 5th, 2012, 8:54 am

Ian,

Sorry for the news you received on your condition. Your case is not the traditional course for als, so I would encourage you to look at all other possibilities (i know you already are). Lyme's disease is the first condition I would be checked for. It is very controversial, but I believe is responsible for some als like conditions, and can be treated with antibiotics. There have been reported cases in the U.S. of supposed als remission with ab treatment. Your lack of clinical weakness, the hallmark sx of als, tends to support other possibilities.

Don't be a victim, keep your face to the sun, and fight for normalcy as long as possible. I wish you and your family the best of luck, and I will pray for you and yours.

Take care,
Gary
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Re: Diagnosed with BENIGN MND

Postby Yuliasir on November 5th, 2012, 8:56 am

Agree with every words of Garym.
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Re: Diagnosed with BENIGN MND

Postby BFSBurger on November 5th, 2012, 12:33 pm

Ian - if you need any help finding Lyme resources, I went the Lyme route already and have a stockpile of information on where to start.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Diagnosed with BENIGN MND

Postby johnnythejet on November 5th, 2012, 1:20 pm

I also agree with Gary, 100%. My thoughts and prayers are with you.
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Re: Diagnosed with BENIGN MND

Postby wjjw on November 5th, 2012, 2:27 pm

johnnythejet wrote:I also agree with Gary, 100%. My thoughts and prayers are with you.

My thoughts exactly. I hope the only loss of strength you end up having is from getting old! Best wishes.

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: Diagnosed with BENIGN MND

Postby Floydian on November 6th, 2012, 4:48 am

Ian, sorry to hear that, as you experience no clinical weakness I hope and pray for you that it eventually turns out to be something else, at least something less serious. Best wishes for you, Floydian.
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Re: Diagnosed with BENIGN MND

Postby prattstar on November 6th, 2012, 5:49 am

Hi everyone

Thanks for your posts of concerns and best wishes.

I am not throwing in the towel just yet, I have a lot of living to do and hopefully many years to do that.

I accept that I have MND, I have to, it makes coping with it much easier.

I am comforted by the fact it appears to be very slow progressing form and whilst I feel weaker, I can still do most things for myself.

I don't want to alarm new people just arriving. My condition is atypical and not reflective of the majority.

Stay vigilant, if you notice changes do something about it but if you are just a twitcher, enjoy your life, get on with it and don't stress over the unknown.

We have one opportunity at life, it isn't a dress rehearsal, we have to enjoy what we have regardless of the obstacles we face on the journey.

For those interested in my journey, you can like my Facebook page, MND-One day at a time.

Thanks again for all of your thoughts, prayers and best wishes, I wish you well.

Ian
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Re: Diagnosed with BENIGN MND

Postby raindog on June 28th, 2014, 7:14 am

I am bumping this OLD post for those who had made comments on it.

Any new posters please please dont fret , as Ian is a very minuscule percentage of people who have developed this disease after an onset period of stable benign cramp fasciculations, while i on the other hand have remained stable and benign after 8 years THE same as everyone else here has who made comment on it

Anyway here is an article about his plight published a couple of days ago here in the UK

http://www.dailymail.co.uk/femail/artic ... d-you.html

I really hope you all put things into perspective and take on board that Ian was a very tiny exception and probably had MND from the outset as its a very different journey for all those who are affected by this disease.

He has my support empathy and in my prayers to have much more precious time yet with his lovely family.
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Re: Diagnosed with BENIGN MND

Postby J4son on June 29th, 2014, 3:04 am

The reason why a vet on this board is bumping such an old thread, and posting such a depressing link is beyond my comprehension…. Human nature has its mysteries sometime... :wink:
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Re: Diagnosed with BENIGN MND

Postby Yuliasir on June 29th, 2014, 5:01 am

j4son,
this one is one of two or three cases among 5000, and reading Ian's story we all amy see again how different is the real ALS case from the stories of benign fasciulations.

Ian's story includes rapid loss of weight with high CPK (significant muscle atrophy), dirty EMG with a lot of suspicious findings and weakness in 6 months after preliminary diagnosis. So we must again think about how differnt are benign fascics and a real MND.
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Re: Diagnosed with BENIGN MND

Postby J4son on June 29th, 2014, 5:57 am

Yes I know it’s different, I’ve read that thread many times in the beginning of my symptoms, so I’m aware that his case is very different from a typical BFS case. My question was about the point of bringing back an old post like this one, on a board where a lot of (if not most) people suffer less from BFS and much more from OCD, depression, hypochondria, nosophobia, health anxiety, GAD, extreme focus on body sensations, somatic disorders and conversion disorders...
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 8:16 am

Hmm I am missing how the article is reassuring - he mentioned he had noticed 'a lot of cramping and twitching' before they got married. Quite a similar pattern to Walton patients.

I am trying to see what you mean by clear differences from bfs - he had no weakness, just fasciculations and cramps and yet he was diagnosed with MND (based on EMG). It does confirm what I said earlier, EMG is necessary. The only clue was the weight loss but without weakness..

So I really think this is more worrisome post than reassuring.. hope I am missing something?
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 29th, 2014, 8:35 am

For me it is also extremest worrisome, it raise to question everything about fasciculations and cramps I have tried to put in my mind over the last months.
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Re: Diagnosed with BENIGN MND

Postby Bibi on June 29th, 2014, 9:38 am

nrwtwitcher wrote:For me it is also extremest worrisome, it raise to question everything about fasciculations and cramps I have tried to put in my mind over the last months.


It is The same here , i have only had this for 2 month now and my Right leg feels very stiff everytime i start to Walk , i am so scared , i am going for vacation in France for 16 days with my family and i try to Calm my selv Down .
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Re: Diagnosed with BENIGN MND

Postby J4son on June 29th, 2014, 11:04 am

TwitchyDoc wrote:Hmm I am missing how the article is reassuring - he mentioned he had noticed 'a lot of cramping and twitching' before they got married. Quite a similar pattern to Walton patients.

I am trying to see what you mean by clear differences from bfs - he had no weakness, just fasciculations and cramps and yet he was diagnosed with MND (based on EMG). It does confirm what I said earlier, EMG is necessary. The only clue was the weight loss but without weakness..

So I really think this is more worrisome post than reassuring.. hope I am missing something?


Twitchydoc,

Of course the article is not reassuring and I, from the start did not understood why Raindog who’s a veteran here not a newbie posted it.

Anyway to answer your question about the differences between Ian’s case and the case of most people here, well I see many differences and it is based on Ian’s first post on this forum not the article.

1) First of all Ian in his first post stated that in March 2011he started getting cramps in his calf muscles, thighs, biceps, and neck. The pain could last for days. How many people here had the same experience? I mean cramping in calves, thighs, biceps and neck with a pain that could last for days? Personally, from the onset of my symptoms till now I cramped once in my left calf after a leg stretching. The pain lasted 30 seconds and never came back…Obviously not the same thing.

2) Fasciculation in his case started in October/November 2011, so 7 or 8 months after the widespread painful cramps he used to get. How many people on this board followed the same pattern? How many people here had hell of cramps for months before twitching? So again twitching was not Ian's first sign. In my own case my average leg or feet cramp is one or twice a year…

3) In 4 months he dropped 18 Kg, weight loss started before the onset of his twitching. How many people here have lost nearly 20 kg in 4 months? Personally I’ve been twitching for about 8 months, during this period I’ve put on 12 kg, jumping from 98 to 110. And 2 years ago I was only 80 kg, so 30 kg in 2 years. Very different pattern I guess… BTW I’ve noticed that fast and severe weight loss is often seen in the beginning of ALS. The french tennis player Jerôme Golmard that i mentioned in one of my previous posts and who was diagnosed with ALS early january, said that one of his early symptoms was a weightloss of 12 kgs in a very short time.

4) From the start Ian got an MND diagnosis from his neurologist (first benign MND then MND). How many people on this board had gotten an MND diagnosis from the start?

So you see many differences...

In his email to Helen, Dr. Eisen mentioned the 8 months period of fasciculation without weakness as a sign for ruling out ALS. But of course if fasciculations is accompanied with other symptoms like weird cramping from head to toes with a pain that can last for days, plus if you lose 20 kg in a few months without being on diet, then surely you are in a different pattern than just twitching…
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Re: Diagnosed with BENIGN MND

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