Case Study - Possible solution to our issues

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Case Study - Possible solution to our issues

Postby Pascal35 on December 9th, 2014, 2:41 am

Dear All,

I was thinking yesterday something that would probably make sense and i wondering if anyone has discussed this with the doctors.
Many of us had an initial body part where twitching started.
For example in my case it was the right arm bicep.
After that and after our google search we all started to have muscle twitching to several other parts, started worrying about weakness, worrying about bulbar onset etc...
My theory is simple.
Let's go back to the initial point where all started (at least in my case). If the muscle twitching on my right arm was the result of ALS onset mechanism in my body - i guess that we should have named my right arm, the onset limb.
So after 13 months if this area of my body is still strong and after several clean EMGs i guess ALL the other twitching areas and concerns are simply garbage and a result of my stress and fear.
Reading about ALS i realized that there is only one onset area - so how come someone starts with twitching in an arm, this arm remains clean BUT then worries about bulbar onset, leg onset etc...
I hope my English is good enough to express my theory and i would love to hear your opinions based on that and based on the experience gained by your doctors.
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Re: Case Study - Possible solution to our issues

Postby Yuliasir on December 9th, 2014, 5:45 am

Good point Pascal,
that is where doctors see differnce beween BFS and MND presentation, and we do not (because we are concetnrated only on the twitching thinking this is an omen). Among the whole MND picture, we have only twtiching which is non-specific symptom, and in the other course of disorder we do not follow MND clinical picture which is, as oyu correctly understand, a weakness in the affected limb up to full loss of usage.
Good that you got this, becasue this may be a turning point in your journey.
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Re: Case Study - Possible solution to our issues

Postby J4son on December 9th, 2014, 1:44 pm

Pascal, very good post and I’ve always thought in a similar way about the whole BFS issue. It also started for me 13 months ago with a very focal deltoid twitch, very strong (I could see my shirt jumping), very fast (1 or 2 twitch per second) and it lasted 24 hours to 36 hours non-stop. Then it stopped and never ever came back in that same location. But when I visited monsieur Google the twitches became widespread in a matter of a few days, but differently (one twitch here and there and not the hotspot I first experienced). I saw a neuro that did a short clinical and said everything ok no EMG needed. A month later my left thigh started twitching like my right deltoids did first. Means a twitch or two per second strong enough to move my jeans, and it lasted 15 hours then stopped and again never came back in that same place. That night I couldn’t sleep because of the fear and I was sure it was ALS, because two different places with such obvious visible strong twitches were too much for me to be just accidental. I Went back to the neuro and he told me: Well ALS is not going to start that way: twitching in the upper right part of the buddy (deltoid) , then twitching in the lower left part (thigh) and then stopping completely with no weakness. A that moment I understood that neuros have a firsthand experience about how ALS starts, and that’s why they seem to be able to dismiss the disease very quickly.

Today whenever something new happens (and it does) I remind myself about those two strong hotspots 13 months and 12 months ago which started this entire downward journey into terror. And I remind myself that if my deltoid twitch 13 months ago was due to ALS, well first it wouldn’t have definitely stopped after 24 hours and never came back in more than a year and second I would have witnessed weakness by now.

A month ago (at 12 months) I went back to the Neuro for the one year exam. It was my decision not his to do the one year exam because I had some increase in my twitches around that period and because I always wanted to do the one year follow-up. He made the same clinical, tested my strength (arms, fingers, neck, thigh, walking on heels and toes) then took a look at my hands (palms/thenars) and tongue, and finally the reflexes (knees, ankles, elbows, wrist) and said nothing changed in one year, everything is normal.

As a conclusion, BFS often starts with some focal twitches but is extremely emphasized by mild OCD and some depression and anxiety.
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Re: Case Study - Possible solution to our issues

Postby leaflea on December 9th, 2014, 8:26 pm

Absolutley correct. After having been cleared by a neuro, our chances of having ALS or any other neurological disorder actually, are less than the general population. Perhaps 1 in 100,000 something develops at some time. 1 in 100,000. It is not logical to keep worrying about this and getting repeat EMGs etc....

However, if anyone has looked into this Mayo study published in just March of this year, I don't understand why more of us don't investigate this or another more likely cause of twitching than ALS. Twitching is not a hallmark of ALS. However, it is a hallmark of some paraneoplastic or autoimmune things. According to this Mayo study - those of us with twitching and cramps have about a 1 in 3 chance of having a BENIGN tumor. 1 in 3.

http://www.ncbi.nlm.nih.gov/pubmed/23836298

So why are we not asking for simple blood tests for neural anti-bodies? Instead of a second, third, or tenth EMG.

Why aren't we talking about this here? We talk about rectal twitches, alcohol abuse, vitamins and all kinds of things, but studies like this seem to be Taboo.
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Re: Case Study - Possible solution to our issues

Postby physerv24 on December 9th, 2014, 8:36 pm

Cleveland Clinic did the paraneoplastic blood panel on me. Didn't show anything and was a VERY expensive test. They sent the blood to Mayo in MN. It took about 2 weeks to get the results.
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Re: Case Study - Possible solution to our issues

Postby leaflea on December 9th, 2014, 8:52 pm

So glad you have had it done. I have not but will be having it soon. I have a good neuro, but I would love to know how many of us have had this and how many haven't? It seems only done at the big clinics. Do you remember what they said about it? They must have thought it worth it to have ordered it. Cost should not be a factor. I am not sure if the paraneoplastic panel would show benign tumors?
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Re: Case Study - Possible solution to our issues

Postby Ghayes420 on December 10th, 2014, 12:03 am

leaflea, thank you for sharing this article with the group. I find it very informative and interesting. I have a question.

I noticed that they mentioned that they went to Mayo to look at CFS patients from 2010-2011. I am not a CFS patient because I tested negative for the CFS protocol testing (also known as RNS) that they do on patients that come to Mayo with twitching. Even though they found fascics on my EMG that same day, I do not have CFS/PNH and that is on my report. So even though I twitch everywhere all day, does this study then not apply to me?

I would go out on a limb and say only a few people here actually would test positive for peripheral nerve hyper excitability (PNH) using this CFS protocol done at the top hospitals. What do you think? They actually have a group on Facebook for people who do test positive for PNH/CFS/Isaac's and other similar conditions. This group is separate from the BFS group.

I am one of the lucky ones I guess because my general neuro ran blood tests for cancer markers as well as the VGKC antibody testing when I first saw him,just six weeks into twitching. I recall reading several cases of BFS patients like pshyserv24 who did have the VGKC antibody test sent to Mayo as well but I don't remember the total count. I can think of about ten off the top of my head is all. I do know we haven't had a cancer dx come back from anyone in the history of this website and its been up for 10 years with thousands of members so that's odd.
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Re: Case Study - Possible solution to our issues

Postby leaflea on December 10th, 2014, 12:19 am

Gregory,

Thank you for your thoughtful response. You post good points. However, the study was from 2000-2011 (not 2010-2011) so subjects over 11 years - before "Matt's test" was available.

I have said many times that our group does not match these studies, this one and the one Raindog posted the other day. I'd like discussion about that fact - a very reassuring fact indeed.

I have also read in many posts on many threads that many or most of us have peripheral nerve hyperexcitability. A clarification of that diagnostic criteria would be helpful. Wikipedia puts bfs and bfcs under that same umbrella with Isaac's being the worst on the spectrum of PNH. Maybe that is the only criteria they give for PNH? I don't know that answer, but it is a good possibility. So, I'd love to hear from Matt if they mentioned anything to him about the possibility of a benign (non-malignant) tumor? The same wikipedia article for public consumption mentions 20% of PNH have a pareneoplastic syndrome.

Yes, you and physerve are two of the lucky ones to have had this panel of tests even without a PNH official diagnosis. And without having to ask for it. Mayo gives these simple but expensive blood tests seemingly as a standard practice - otherwise only 37 of their patient's over 11 years would have had it done. Evidently, your neuros saw something of value in doing them even if their threshhold for suspicion was very low and it cost a lot of money. That is awesome medical practice in my opinion.

Lots to think about.
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Re: Case Study - Possible solution to our issues

Postby Ghayes420 on December 10th, 2014, 12:40 am

Leanne,

Excellent points. Thank you for pointing out the error in the years of the study I noticed. I do believe that the CFS protocol testing was available as far back as 2006 but I could be wrong here. Twitchydoc may have more info on the year that was instituted. So your point would be that the test subjects may or may not have had the confirmed CFS protocol testing, point taken.

There is much confusion over the years as to the definition of BFS/BCFS/CFS/PNH ect. My opinion is simply this, myself and Matt had the CFS protocol testing done. His was done at Mass General and mine at Mayo. one of us is positive and one of us is negative. Yet we both relate to the symptoms of everyone on this forum and more. We are both ruled benign. This new diagnostic testing can differentiate between BFS or 'benign fasciculation' and CFS/PNH. That's great medical breakthrough! Both conditions are benign, but those with PNH have more options to treatments like IVIG and yes, that is a very interesting fact about the 20% of PNH patients having a benign tumor.

Since 0% of people on this board have reported a benign tumor, that then may indicate my hypothesis is correct and most here would also test negative on the CFS protocol test as well?
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Re: Case Study - Possible solution to our issues

Postby Pascal35 on December 10th, 2014, 12:45 pm

Yuliasir wrote:Good point Pascal,
that is where doctors see differnce beween BFS and MND presentation, and we do not (because we are concetnrated only on the twitching thinking this is an omen). Among the whole MND picture, we have only twtiching which is non-specific symptom, and in the other course of disorder we do not follow MND clinical picture which is, as oyu correctly understand, a weakness in the affected limb up to full loss of usage.
Good that you got this, becasue this may be a turning point in your journey.


Hi Yulia,

The reason that we panic is mainly because noone can give us convincing answers as to what brings those twitches to our body.
It makes a common sense my earlier statement but each time i have a new twitching spot i cannot prevent my fear...
Over the last 4-5 days i have a constant twitch when i lay in bed on the right side of my upper back (close to spine) --- I can explain it because i am working out with some weight all over my body but then the question is simple: Why in the past i never had twitching after gym and now i do...? What is this all about? Is it going to stop?
But to be honest if i convince myself that this twitching is not the beginning of a terminal illness then i wouldn't mind... But there is always a but...
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Re: Case Study - Possible solution to our issues

Postby leaflea on December 10th, 2014, 1:07 pm

Pascal,

You may have reached an epiphany if you realize twitching is not the hallmark sign AND you have been checked by a neruo. Hold on to that and meditate on it now if it has sunk in. It is a turning point in the journey of getting over the fear! Congratulations!


Gregory,

I don't have that answer about people not reporting benign tumors (or malignang onet for that matter:-) Benign tumors don't turn into anything more, so its a possibility there are a bunch of us sitting here with benign tumors causing our symptoms and we don't have any reason to suspect it is there. The body makes antibodies against it because it knows it doesn't belong and is an intruder. Maybe a remote possibility, but there just is not a lot of research or information out there about this. That is why I'm hanging and pondering on this very new Mayo study published earlier this year. This review from Mayo looked only a those with CFS - it would be helpful to know their criteria for diagnosing that. Maybe a next study would be to look at all of us who are clinically similar and do not have the exact same CFS markers setting them apart and see if a number of those without the CFS markers also have a benign tumor because clinically they are the same. Put you and Matt next to each other and we might think you are twins even if your test results don't exactly match. Like the Oxford study posted in the other thread by Raindog - they divided groups based only on EMG results although all subjects had similar clinical presentation. They found little differences in the blood work between the two groups - so it was based more on clinical presentation than labs or EMG. Oxford study had kind of the opposite approach as the Mayo study in a way. I know its complicated. We need to put our collective brains together and think it through. Thank you for you patience and willingness to consider possibilities.
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Re: Case Study - Possible solution to our issues

Postby Pascal35 on December 12th, 2014, 6:23 am

The theory is correct and i guess it makes sense but unfortunately sometimes is very hard to convince ourselves that this is a benign issue that we are dealing with...
For example. In the past (6-7 months ago) i had an almost constant twitch in a specific part of my tongue. Like this small part was pulling pulling the muscle slowly and created a tingling feeling. This was lasting for a few seconds and happened quite a few times a day especially when i was using my tongue or put effort on it.
During that time i went to doctors had tongue EMGs and all clear.
A few days ago i noticed in the mirror a small line in the area of the this twitch (which by the way almost stopped since then). This line ONLY appears when i fully extend my tongue and its not there when my tongue is at rest. The twitch also came over again.
Now this is freaky. I am afraid that this twitch created an atrophy in the tongue... Obviously this is very scary.
At the same time i have a constant twitch on my upper back right side (almost behind my neck) which i feel it whenever i lay down on my back. This is present for around a week and freaks me out. Maybe due to the new weight training. I am not sure anymore but generally its a very stressful situation. You can't think logically
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