Diagnosed with MND: Journey

Highlights Only
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, Fjordian.
 
Hi everyoneThanks 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
 
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 itAnyway here is an article about his plight published a couple of days ago here in the UK 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.
 
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... ;)
 
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.
 
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...
 
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?
 
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.
 
JoshSon, yeah I see your point, these differences I spotted too. But in the article linked (and somewhere else where he described his story, I guess it was FB) he said he had started to get twitches and cramps shortly before they got married in 2009, i.e. 3 years before it progressed and the weight loss occurred.
 
I had my 8 month check up with my neuro last week and had a discussion similar to this story with him. There was a guy in the local press who had bad cramps for a year and then twitching. Like this story he didn't go to a neuro for a year but anyway my neuro said cramping such as that would be a concern to him and he would keep an eye on the patient so different to someone with only twitching. He said the description of symptons when they started etc is so important when a neuro asses the patient
 
DaveCH: That is true. Cramps are generally known to occur in MND often as a very first sign, representing the beginning of denervation (denervated muscles are hyperexcitable and very prone to cramps), i.e. months before clinical weakness is present. If you remember this other unfortunate case on this forum (I cannot remember the nickname now), he too started with cramps in his hands.So yes, you are right (as well for JoshSon) but I still do not find that post really a positive and reassuring one. But on the other hand, I am sure that was not Raindog's intention.
 
Gary, i agree. Just to add - he was getting cramps in neck, biceps etc. which is concerning and quite rare even after workout. I remember from the college that cramping in any proximal muscles suggest neurogennic patology. That matches with MND onset patters, where cramps precede the other symptoms by 10-14 months (Eisen, 1990).On the other hand, there is BCFS, so it only adds more variables to the whole equation.
 
JoshSon, I would not say he was changing the story, somewhere he wrote that it started before they got married (2009) but probably it was just mild or occassional. Anyway, cramps are mentioned first in either case. I feel really bad about chewing over his story as if it was some unknown case in a medical textbook, I cannot imagine the hell Ian has been through. I mean, we all have had a glimpse of what it probably feels like and some of us - like me - cannot still get over it. Lets leave this thread and in case of need, we could PM.
 
Yes JoshSon, that is correct. Medical literature distincts between BFS and CFS/BCFS. But again it depends on the author, e.g. Eisen himself writes that benign fasciculations with cramps are rare and uncommon. On the other hand, with CFS, one could expect cramps similar to MND because probably the origin is the same or very similar.It should be noted that documented cases of fasciculations progressing to MND (including Walton study and Carvalho's individual reports) were actually cases of BFCS with the pronounced cramping component.But as the cramp-fasciculation syndrome is a well described entity, I would say it does not represent a higher risk itself, it is just more difficult to dinstiguish and possibly rarer than BFS.
 
Raindog, emg cannot pick up upper motor neuron signs, so you are talking about clinical? Maybe that is the piece of the puzzle we are missing here - I never know he had had any upper motor neuron signs. Thanks for bringing this point, that would explain a lot!
 
Raindog, but you do not have typical BFS as your neuologist confirms some kind of benign lower motor neuron disorder with abnormal emg reading. So I would not count you as a bfs case from this perspective, no offence):) in that case cramps are expected.,Could you elaborate on my previous post? I think it would clarify things ;)
 
Thanks, so there was hyperreflexia - that is new for me.Upper motor neurons do not refer to the upper/lower part of the body but rather to their origin - UMN originates in the brain and go down to LMN - all muscles (including tongue) are innervated through LMN. But that is just to make things clearer ;)
 
yelflowhunter, JoshSon only commented what is the common knowledge among MND specialist and quoted official papers...but you mentioned you were having cramps in your feet - that is normal!Cramps in feet or calves are quite common and should not worry you. His comment was aimed at cramps that are regarded as concerning, i.e. cramps affecting unusual places but it still does not mean that you are going to develop MND. As Gary confirmed, there are conditions where the cramps are common and still the condition is benign but you cannot blame the neurologists for being cautious - both fasciculations and cramps appear in MNDs and hence it is clear that patients with both of these phenomena will be followed up more cautiously.
 
I got really scared when reading this thread. Of course I try to be realistic and try not to freak out. I know the chance that this happens in someone with BFS is very rare, but... The more I read about it, the more I learn that the onset periode can be very different in anyone. MOSTLY you are safe after 6 months of twitching and no other signs. But sometimes you are not.... Those situations are very very rare. But what gets me freaking out is that I don't know if I will be that person with that rare type of onset of ALS. Do you know what I mean? This is what happens in my head. What if I'm the one that has that slow and rare type of onset? It could be...?I just hate that there ins't a bloodtest or something for ALS. I read so many stories of people with ALS having 1 or 2 normal EMG's and then the 3 is suddenly dirty. How can I be 100% sure I don't have ALS, when I only had 1 EMG? Internet is bad, because you can find all the worst case scenario's now. 40 years ago when you were twitching you just new nothing, the docter told you you had bfs and you stopped worrying....
 

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