Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby chrissi on September 18th, 2012, 10:20 am

Thank you raindog. I am sure he can need all your support. As I mentioned before, your case of BCFS sticks out of thic community, with all those problems and the EMG changes you have. So I am very very glad you still hang around here in full strength now and many many more yewars to give comfort to the few people that do not get the usual " all benign" stamp from their neuros. And show that even in cases like that, a dirty EMG does not necessarily mean the nasty but that there are many shades of grey. This should also be a reminder to the countless people on this board who have a CLEAR BFS diagnosis by one or several neuros because of their symptoms and their EMG, to be happy and glad to be brushed off by their neuros like that. See, Ian only has some minor EMG changes and no weakness and still his neuro is not comfortable with clearly diagnosing him with BFS....so please accept that you, having a neuro giving a BFS diagnosis, should stop worrying about having anything sinister and be glad and thankful every day that you are NOT hanging in there as he does.
Ian, as I already said, I really hope it will turn out like raindogs case for U. And I am sorry if you do not get the support you need so badly on this board. But we peple with BFS, we do not only suffer from some twitching but honestly we are a bunch of hypochondriacs and over-anxious people. So a post like yours does not really cause the normal reaction- being empathetic and trying to comfort the suffering person- but it causes an immense anxiety relapse in most people and they react anxious and in panic mode. That is the way anxiety works. And anxiety is the twitchers biggest problem, not the twitching itself.
So I just HOPE that you find a place where you find reassurance and support.
Take care
Chrissi
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Re: Diagnosed with BENIGN MND

Postby prattstar on September 18th, 2012, 10:53 am

Chrissi
Thanks. I am feeling better having spoken with raindog and the general feeling of empathy.

I don't have a malicious bone in my body so initially found reactions to my post incredibly hurtful given the nature of my dx.

Like everyone I am here to learn, support and be supported.

Fortunately some of the posts have been removed and cleaned up.

I believe in my heart that there is something wrong with me but I could more relate to the symptoms of bcfs than I could mnd because I have no weakness.

My stress at the moment is almost intolerable. I have a 2 year old that I am constantly hugging to bits, she thinks her daddy is nuts.

I intend to remain positive and am also tapping into some counselling just to lighten the load.

I believe my outcome will be positive, I just have some bridges to cross first.

Another EMG is being booked for mid October on or around my next clinic.

I thank raindog and Matt from the bottom of my heart for giving me the hope that was taken away from me last Monday.

Warm regards and best wishes to you all and again I'm deeply sorry if I upset anyone.

Ian
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Re: Diagnosed with BENIGN MND

Postby chrissi on September 18th, 2012, 11:03 am

Just an idea...maybe it would be a good idea to see raindogs doctor for your further treatment. I think by now he has developed some good experience with this condition you have and I think he might be able to bring some light into your case.
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Re: Diagnosed with BENIGN MND

Postby prattstar on September 18th, 2012, 11:17 am

It just so happens raindog is seeing one of the doctors that works with the Professor that gave me the dx. I am now booked into clinic for mid October and will have an emg date confirmed by the end of the week.

As he has said we share an awful lot of similarities, we even live in the same town in the UK.

Has been positive already just speaking with him.

Ian
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Re: Diagnosed with BENIGN MND

Postby chrissi on September 18th, 2012, 11:25 am

That is good. I am happy you get his support, he is a nice guy with a good sense of humour. He is the best support especially for your case you can get, so it is a great coincidence you guys live so close!
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Re: Diagnosed with BENIGN MND

Postby raindog on September 18th, 2012, 2:45 pm

Ian you can also tap into my support whenever you like its not a problem. It may also be worthwhile to make a written request for your records and results.... i asked the consultant who got them sent to me from his secretary , as it may just help to see how both of our EMG 's compare.

ATB

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Re: Diagnosed with BENIGN MND

Postby Noturnus on October 1st, 2012, 7:52 am

Abnormal nerve conduction studies points towards neuropathy and not mnd. Mnd is diagnosed when ncs is normal and the emg show changes. I cant understand why you got a benign mnd diagnosis when the only peoblem your neuro found was with your ncs.
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Re: Diagnosed with BENIGN MND

Postby chrissi on October 1st, 2012, 8:37 am

They apparently just counted the EMG to the whole picture of NCS , because the changes showed (fasciculations and changes in motor unit potentials) are EMG results, not basically NCS results. They sometimes do that here to, when they order an NCS this includes the EMG, even though it is something completely different.
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Re: Diagnosed with BENIGN MND

Postby prattstar on October 2nd, 2012, 1:59 am

Chrissi

The NCS and EMG were done at the same time and you are right and the results quoted most likely relate to the emg part.

I have requested the reports and should have them today or tomorrow so will be able to read them for myself.

I am booked for another emg on 16 October and Neuro followup on 17 October.

I have purposely not posted on this forum other than this thread as I don't want to alarm fellow twitchers until I have had an opportunity to clarify my diagnosis with my specialist.

Thanks again for your comments.

Ian
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Re: Diagnosed with BENIGN MND

Postby prattstar on November 4th, 2012, 2:04 pm

OK Folks

Have had my latest EMG and results are not good

Conclusion is that the results support a diagnosis of ALS / MND.

So this board is not the place for me.

Thanks to those of you that made me feel welcome anyway.

I have found a home and support on the ALS Forum.

Had been a difficult few weeks. I still have no clinical weakness, other than some issues with my neck and my muscles in general feeling very fatigued.

I with you well but don't want to alarm any of you.

I am setting up a foundation in the UK to raise funds and awareness for MND.

My Facebook page is MND One Day at a time. If anyone is interested.

Warmest regards to you all.

Ian
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Re: Diagnosed with BENIGN MND

Postby BFSBurger on November 4th, 2012, 2:50 pm

During august 2011 to December I lost about 18kgs of weight. CK levels 236 in December.

Sorry to hear of your diagnosis.

The fact that you:

* Lost nearly 40lbs of weight
* Simultaneously had a high CK/CPK level indicating muscle wasting
* Had an abnormal initial EMG
* Had an abnormal initial MRI
* Had an abnormal initial Nerve Conduction test

... certainly were of concern.

I hope that your condition turns out to be something less severe than ALS.
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 tessa on November 4th, 2012, 4:45 pm

Ian, just want you to know my thoughts and prayers are with you and your family. Take it one day at a time and don't give up! Lots of love, Tessa
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Re: Diagnosed with BENIGN MND

Postby raindog on November 4th, 2012, 7:20 pm

prattstar wrote:OK Folks

Have had my latest EMG and results are not good

Conclusion is that the results support a diagnosis of ALS / MND.

So this board is not the place for me.

Thanks to those of you that made me feel welcome anyway.

I have found a home and support on the ALS Forum.

Had been a difficult few weeks. I still have no clinical weakness, other than some issues with my neck and my muscles in general feeling very fatigued.

I with you well but don't want to alarm any of you.

I am setting up a foundation in the UK to raise funds and awareness for MND.

My Facebook page is MND One Day at a time. If anyone is interested.

Warmest regards to you all.

Ian


Ian what can i say, I'm absolutely gutted that you have been diagnosed with this, but at the same time pleased that the clinical weakness is not yet showing up, which still might offer you a much less aggressive and slower disease process, that may give you lots more years yet.

I'm still up for a coffee if you ever want talk and vent just give me a ring.

Hoping and wishing that you stay strong in mind and body.

Guy
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on November 5th, 2012, 4:02 am

I am so sorry to hear that. I do believe can have a syndrome that raindog pointed out, I am in the touch with the neurologists who reported it. Basically it would mean that while you are now experiencing denervation and reinnervation (and hence fasciculations cramps and fatique) it is slow enough, meaning reinnervation compensate the loss well. And it might stop as for the case reported. The fact you have no clinical weakness but neurogennic changes would verify that.
As for benign ALS (duration around 30 years), term used by Forbes H. Norris:
http://books.google.cz/books?id=rq0qiZY ... 22&f=false

I would need to know the exact EMG results and whether or not the bulbar area is affected (tongue fasciculations).
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Re: Diagnosed with BENIGN MND

Postby prattstar on November 5th, 2012, 6:26 am

Tessa Thanks for your comments.

GUY, I will call you for that coffee and chat.

Twitchydoc, I can scan and email you the three emgs I've had done.

The latest emg says, extremely widespread motor neurogenic change with evidence of acute and chronic denervation in muscles in the cervical, lumbosacral and thoracic regions. In addition there is evidence of chronic denervation in bulbar muscles. The findings lend very strong support to the clinical diagnosis if Motor Neurones Disease.

I don't have the individual readings this time.

Thanks everyone for your comments and links I am maintaining my positive attitude.

Warm regards

Ian
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Re: Diagnosed with BENIGN MND

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