Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby prattstar on September 17th, 2012, 6:36 pm

I have changed the subject line to remove confusion.

Now I am going to be bombarded with people that claim such a condition does not exist.

I don't think this board is the place for me.

This diagnosis is distressing, particularly when I am told by the neuro that it is progressive and no cure exists. I am started on Riluzole and given a brochure on progressive motor neurons diseases, I'm not sure how that is a benign condition but I didn't have a lot of time to clarify and given the news I had just received, could be forgiven for not asking.

Taking some time out, I have enough to deal with.

My apologies to anyone I have unintentionally misled.

Ian
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Re: Diagnosed with BENIGN MND

Postby jpbw on September 17th, 2012, 6:41 pm

Ian,

I'm sorry for the aggressive nature of my post, I cannot imagine what you are going through. Benign or not, I wish you the best of luck.

My comments re: the title of your post were purely in relation to the 'community' here. I would recommend posting in the ALS forums, for no other reason other than they are experts on all things MND and will be able to help you possibly more than your neurologist could. I dont claim to be an expert on anything neurological and infact have had no dx or even a neuro consultation.

All the best,

Jon.
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Re: Diagnosed with BENIGN MND

Postby Shanny63 on September 17th, 2012, 7:02 pm

ok gonna give my two cents here....ian if u are taking riluzole then u do not have a benign MND...riluzole is prescribed for progressive MND which u now say u have...
you have my sympathies on your diagnosis and i wish u only the best, my only statement that i want to make regarding your post on here is that this forum is for benign fasiculation syndrome suffers..it is a support group for such suffers..u obviously dont have bfs..
when newbies and people struggling with their bfs read posts like yours they panic...they believe your story is their story, it causes massive amounts of anxiety and stress to them...
im sure this is not what u wanted to achieve, or at least i hope not..
and yes people will say im a heartless *beep*, ok i can wear that...but i have been a twitcher for a long time now and i know that every now and then a post like yours pops up, causes untold stress and damage and puts newbies and those struggling backwards again...
as jon suggested maybe an als board would be more helpful with your symptoms and ongoing problems..they are great people over there and they would understand your diagnosis more than anyone over here would...
as i said i wish u the best and i hope your neuro is wrong....shanny
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Re: Diagnosed with BENIGN MND

Postby mwagner on September 17th, 2012, 7:06 pm

Ian,

I'm so sorry that you are receiving so little empathy right now, because you deserve a lot of support. You have to realize that we're mainly a group of very anxious people on this board... so please forgive us for this being a trigger for worry/fear. It's an unusual diagnosis, that obviously no one was prepared to think even exists.

I personally am praying for you in the next 6-12 months that no weakness occurs and that you can be reassessed and categorized back to BFS or whatever else benign diagnosis they give you.

I think that the diagnosis is unusual and no one here has heard of it, and that's why you're receiving so many questions. Try to look up the studies Matt brought up earlier because it seems like there is much more hope since you don't have weakness yet, and may never have it.

Take care of yourself, Ian and my best thoughts and wishes go to you. I do hope that in the 6-12 months, when your symptoms have stabilized, and they re-assess you, that you will come back to let us know the good news.

Mitra
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Re: Diagnosed with BENIGN MND

Postby tessa on September 17th, 2012, 7:14 pm

Ian...Just want you to know that I am lifting you up in prayer and like so many others will be praying for no progression!!
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Re: Diagnosed with BENIGN MND

Postby Shanny63 on September 17th, 2012, 7:14 pm

hi mitra, i agree ian does need a lot of support, but is a bfs site really where he will receive the best support??
u and i both know how posts like this can be triggers for immense stress and anxiety in our bfs community..
i wish ian all the best and i pray that he can get the support he is obviously looking for...
i just dont believe that we as a group are equipped to give it to him...
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Re: Diagnosed with BENIGN MND

Postby wjjw on September 17th, 2012, 7:31 pm

Shanny63 wrote:hi mitra, i agree ian does need a lot of support, but is a bfs site really where he will receive the best support??

Maybe. Apparently, he got some support from raindog, and that may be just what he needed. But the core problem is that he was told something (?) by a specialist without any logical or detailed explanation. A bunch of people on a twitching forum can only tell him what we can observe from thousands of twitching posts since this site was started. If a specialist says something that does not make sense, or contradicts what we observe, then it is completely up to them to provide a detailed explanation to Ian. If I were Ian, I would have a very long list of specific questions and I'd make sure they were answered by the specialist, or else I'd find another one.

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 Shanny63 on September 17th, 2012, 7:35 pm

totally agree with u bill, i think ian should go back to see the neuro who has diagnosed him or find another neuro and take all his files with him so he can get straight answers to what is going on with him...
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Re: Diagnosed with BENIGN MND

Postby mwagner on September 17th, 2012, 8:03 pm

Shanny,

I agree with you, this isn't the best place for support for someone with Ian's diagnosis. I think we were posting at the very same time, because it sounds like I'm disputing what you were saying, which I'm totally not. I didn't see your post until after I posted my post.

This is going to scare a lot of people (including myself, because I'm always filled with health anxiety), but to no fault of Ian's who has some strange diagnosis that doesn't seem to not fit in any real category. Unfortunately, I am not sure the &LS boards are the right place either. So far, the doctor has left this open for reassessment. So, Ian's left in limbo somewhere, and my heart goes out to him. But, by the same token, I feel like there's a good chance he's going to be okay. I think the most encouraging factor is that it's been over a year without weakness.

Anyway, I think you are truly one of the most kind people I know, and no one is going to think you're heartless over your post. You're just being real. You know what the population on this board is like - we're not exactly the most laid back folks when it comes to news that's not encouraging.

Love,
Mitra
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Re: Diagnosed with BENIGN MND

Postby Shanny63 on September 17th, 2012, 8:10 pm

Hi mitra, I agree with u...and u are so right honey, we are not the most laid back bunch... :lol: ...and yes I hope Ian is ok..I hope he goes back to his neuro and gets some solid answers to his questions...it would be awful to live in limbo with this kind of diagnosis...
So we are both on the same page....hugs to u my friend..love shanny
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Re: Diagnosed with BENIGN MND

Postby jerry2 on September 18th, 2012, 12:23 am

Yes, I can fully understand Ian what he is going through. Seems he doesn't have BFS and seems he doesn't have full blown MND. So he doesn't belong not here not there.

And one member here told me here we "don't want bad news". And as we see it, the EMG shows some problem for this condition not to be benign, but there is only twitching with no weakness for a year. So that can scare only us without EMG.

But I think that raindog cleared the confusion quite good and Ian got support he needed there. Seems from my understanding that we do have one other member with benign MND and the condition stayed benign. It seems a rare thing in the first place and seems it stays benign. I hope Ian it stays without weakness for you also!

I was reasearching now and seems ALS patients also have problem with this diagnosis that is why Ian was advised he may have BFS.

As some other member said, there is more spectrum than BFS and ALS but it seems benign means no progressing. And that is what it matters to IAN and the rest here.
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Re: Diagnosed with BENIGN MND

Postby mary_cali80 on September 18th, 2012, 12:24 am

Hi Ian, I read your posts on another forum and am wondering if you're seeking another opinion? I read what you wrote about your specialist saying she could also diagnose you with BCFS, but just in case she's diagnosing you with Benign MND and proceeds to prescribe you a drug saying otherwise...just in case.
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Re: Diagnosed with BENIGN MND

Postby prattstar on September 18th, 2012, 1:22 am

mary_cali80 wrote:Hi Ian, I read your posts on another forum and am wondering if you're seeking another opinion? I read what you wrote about your specialist saying she could also diagnose you with BCFS, but just in case she's diagnosing you with Benign MND and proceeds to prescribe you a drug saying otherwise...just in case.


Maybe I haven't worded that correctly, she said that BCFS was an option but believed in her heart of hearts it was MND and she should treat it as such, otherwise valuable time could be lost if we didn't do anything.

I have no idea which category I fall into. Raindog has sent me some really useful info to discuss with my neuro.

I have a list of questions for my neuro so that I am better informed.

I am so very sorry if I have upset/distressed anyone, this was never my intention.

I registered on MND forum (UK) and am getting positive support there. Someone on that site suggested I register here as well.

This is all very fresh folks, I got my DX a week ago and am trying to make sense of it.

I also saw my neuro nurse yesterday so had some pretty raw emotions exposed.

I am determined to fight this whatever it is and I will know more myself in a month after I have seen the neuro.

Thanks again for the positive comments, again apologies for those I've upset.

Warm regards and best wishes to you all.

Ian
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Re: Diagnosed with BENIGN MND

Postby chrissi on September 18th, 2012, 2:37 am

Hi Ian,
I am very sorry what you are now going through. Havent been able to read the whole thread. I have immediately been searching a lot but I could not find it, but I know out there exists a paper sometime about people with exactly your progression, meaning very strong painfull cramps of long duration , dirty EMG and then followed by twitching some months later that were diagnosed with some "in between" dx of Motorneuron disease and BCFS and I KNOW that this stopped at one point.I will try to find it again whe I have a bit more time. I wish you only the best, especially as I figure you must be going through hell right now.
Maybe you want to sign up in a MND board as well, because those are the "specialists" for motor neuron diseases of any kind.
Take care
Chrissi
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Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Diagnosed with BENIGN MND

Postby raindog on September 18th, 2012, 4:42 am

Ive spoken to Ian over the phone here, what is amazing is that we share more than a few of the same results but he also lives nearby in my area and our onset was very similar in age and that we both had a young child. Ive told Ian that the neuro is adopting a wait and see policy and i'm hoping like myself that his muscle strength remains constant and unaffected like mine has done for over 6 years. We plan to keep in touch and ive even given him permission to mention my case to his specialist when he see's her and even my records for her comparison if she needs to.

My fingers are crossed for you Ian.... try and keep positive and strong.

My best wishes.
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Re: Diagnosed with BENIGN MND

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