Atsugi

Hi, how are you doing? I was wondering if there is a way of deleting my profile because since I changed my status I started receiving messages of people with bfs and I think this will happen more often not just for me but to the forum in general since I had bfs for years before and maybe this will make things harder for you to manage the messages that will come from people who will use my case as an "example" about what can happen to them. I dont care about messages directed for me, I will try to answer. I am worried with the scared people posting more and more here because of me. What do you think?

I have the appointment next Thursday, I just thought to ask if the addition of (mild) cramps raise any more concern.

I understand, but every source I can find says CFS is rare, much rarer than regular BFS, and that doctors take cases with fasciculations and cramping much more seriously than just fasciculations. And with all due respect, all I've heard from the doctors is that the EMG didn't show anything, but they think I should come in for another examination with a GP. One thing I read on the BFS forum (and I think it might have been a sticky), was a quote from a neurologist who said that EMG is only 60% sensitive to ALS changes, even in the best hands, which seems to contradict pretty much everything I've read about them elsewhere. Another sticky there said that "no true fasciculation can be strong enough to be seen trough clothes", and I've had a very strong and fast twitch in my left tricep a couple of times, which I could see trough a hoodie sleeve, and that seemed to move the whole muscle. Can I take this as a reassuring sign?

Hi Mike. I am very sorry to be back and I promise that my concern is not from hanging on this forum, I just cannot get rid of the anxiety. So, what I forgot to mention was that both my thighs (especially the back sides) are stiff, as confirmed by a physiotherapist in August. This has not really bothered me, but lately I've been having squuezing pain feelings in the thighs muscles, espescially on the right (I've also had this a bit in my right hand), which I thin is mild cramping, and lately I've been experiencing slight leg jerks when lying down, so I googled a bit and these appear to be consistent with spasticity. So my question would be: would als spasticity present symmetrically, and can spastic muscles be relaxed at all so that they feel more or less normal?

Mike,

WE sincerely hope that we can find value in the survey, and would appreciate your support.

As explained in our message, We have interviewed Medical Doctors (Neurologists), Pharma companies, Health Insurers, and Government health systems experts. One of the key findings amongst many is that diagnosis is a problem. There is no diagnostic tool out there to make a good definitive early diagnosis for ALS. As such, we're keen on following down this line of thinking, and evaluate the patient / customer experience during the diagnosis process. We will be presenting our findings at the annual healthcare meeting this winter, and would like to underscore the need for good diagnostic tools.

We believe that getting the valuable opinion form the forum will help us provide distinct data to support the proposed initiative.

Your assistance will be most appreciated.

Paul
PhD Drug Discovery.

Dear Sir.

I am a drug discovery scientist, with experience in blue-chip pharmaceutical R&D. I have been working at Novartis, developing medicines for rare diseases. My colleagues and I are doing a Project to understand some of the drivers behind why rare diseases do not have medicines inspire of the unmet medical need.

Or I can stop posting anything at all. I don't know

I will not start a thread again about something I tink can be usefull. I will try it by myself.
I will just post answers If I see a question where I already read something related in some research with the research link. I think this way I will not confuse anyone with things that I believe can help, only with things studied in researchs about the disease. What you think?

Well, the majority of things that I post is answering some questions and it is bases on things that I read on research that I read about the disease. But if you think it is better I can stop answering them.

Hi, Atsugi. I am now allowed to send private messages to you so I answered here and split the message due to word limit

I'm still undiagnosed. Last year I had what the doctors called "head drop syndrome". As I already had muscle cramps and fasciculations for almost eigth years at that time they thought it was ALS. But then I had an emg and there were no signs of denervaton so they said it was not als. After a period of three months my head returned to normal and I could go back to work. I don't know why that happened. After this I was cleared of als, but then this years, just about one year from what happened last year I started having it again. My fasciculations are still benign according to a new emg, but I now have cramps everywhere and everytime, unless I drink a lot of tonic water. My head started having the same thing from last year, it dropped again and I cannot lift it for more than some seconds. My left leg have muscle atrophy, something I didn't had before and I have weakness in my arms and shoulders. If I left my arms unsupported they do a kind of "crack" when I move them.

This started in my arms but now it happens in my legs too. Sometimes it hurts. The doctor told me this is called contracture. Although the fasciculations are still considered benign, they are very different now. Before I had them sometimes a day, now I have it nonstop specially in that leg where you can see the muscle atrophy. Even having all of this, when I go to the neurologist I can pass the strength tests they gave me and they can't find hiperreflexia. The last emg is still clean besides fasciculations. So the doctors don't know what is causing this but did all the other possible tests to try to find other possible causes but all of them came out negative. So at this point he said there is nothing to do but wait and see if the things got worse with time and thats what I am doing. While I don't have an answer I am trying to live as good as possible until I get some answer to all of this. Thats why I am reading researchers papers in order to try to discover supplements that can

slow down the disease, because if it is als in my case at least I can try to take than from now even before diagnosis to see if it happend slowing down if this is the diagnosis.

Thank you sir I will try