Down that road again

BFS Online Support Group

Moderators: JohnV, Arron, garym

Down that road again

Postby German2 on December 14th, 2014, 11:19 am

Hi there,
- don't read this post if you are very anxious....-

I had a long time occupied with health problems the last weeks so I stood away from this forum (sick feeling, lung and breathing problems) and was not even able to think about ***. I felt so bad, that I had to stay in hospital. But now, after sickness is gone, my "old" problems develop and I am down that road of anxiety again. My left foot is twitching since 17 month know. Not nonstop now, but in the evenings or after sports. For a while I had a strange non stop buzzing in this foot. Then it was gone. And now, my left foot feels somehow weird. Hard to describe. Something inbetween uncoordinated and numb. It seems to me as it says goodbay more and more each day. And every day I have several hours where I have total weakness of my legs, so that I have the feeling, I can't go anywhere. And a total fatigue. In addition, I have problems to keep my balance...I do my exercises but cannot improve myself..

There is a famous ALS blogger in Germany. She experienced her first symptoms in 97 and was dx in 2000. I don't want to mention her symptoms but there is some accordance. She is still alive - was quite young that time...And this makes me feel so convinced now. that I have to go the same road one day.

Tomorrow I am leaving to a rheuma clinic (I was recommended) but I feel that it is not the right place to go. Ok, I can see a neuro there too. But it is not specific. My reflex status is not yet noticable. I have symptoms since 26 month and twitching 17 month. Those two years were partyl like hell. Now I had a "rest" due to other health problems.....it is back.

German
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Down that road again

Postby reanne2489 on December 14th, 2014, 11:52 am

I think the problem with ALS and why neurologists have such a hard time with it, is it is a disease diagnosed by elimination. There are many things which mimic ALS also.

I know we all worry [i feel like we never fully get over it] but the way to try and rationalise things is that in the most part, ALS presents itself with a failure to do something. Not just feeling things are harder, but not being able to do something we did before, or having a noticeable weakness doing something.

The way to look at it also is that for ALS patients who experience twitching as the first symptom, they make up only 6% of ALS patients, and not to mention that ALS predominates in the older age groups, and more so in men than women. So overall, the likelihood of it being ALS are very slim. Also neurologist reports have said the average time of an ALS patient experiencing only twitching to noitceable weakness was 7.2 months - you are well past that time period.

I know I too have read of a handful of ALS patients who have experienced twitching for a lengthy period of time before diagnosis, but they are so few, and have tended to be men and also older. Most younger people who are diagnosed with ALS tend to have the inherited kind, such as Anthony Carbajal, the young man making headlines in America raising awareness and fighting to find a cure for this disease.

The only other young woman I read of with ALS, was a 26 year old basketball player, but she didn't start with twitching- it was a feeling like her body was "off"; that she "couldn't get off the ground" and even when she worked out harder she still got weaker. So yet again, despite being young, she presented with weakness first.

I think explore other routes of what it might be- MMN is an extremely close mimic of ALS but can be treated. Also other disorders like fibromyalgia etc cause many many symptoms like twitching and tiredness etc, and are much more common in women, but can take up to 5 years to diagnose as the main diagnostic is pain felt when touching the joints.
reanne2489
Senior Member
Senior Member
 
Posts: 69
Joined: September 14th, 2014, 7:27 pm

Re: Down that road again

Postby SecretAgentMan on December 14th, 2014, 11:59 am

I used to have the feeling like I was a prisoner trapped inside my own body. Like my malfunctioning body was my prison cell and no matter what I did I could not escape it. I believe I have read others say something very similar on this forum. Do you ever feel that way? It is sort of like if we are in a place where problems surface, like at work, we can leave at the end of the day and go home for relief. We have an out, where we can escape and run away from our problems. BFS brings our problems so close to our doorstep that we have no choice but to face them. So with BFS there is no escape. What do you do? How do you handle it? Despite having no escape people tend to desperately try. We panic, worry, and mentally try to run away even though we are physically stuck right here in that body.

For me, the only way that I was able to finally start experiencing any type of relief came only when I began to face my problems rather than worrying and mentally trying to run away. We're talking about a mindset here, an attitude. I have done a lot of deep thinking after having had my experience with BFS. Why does BFS tend to manifest in people with such chronic worrying and anxiety problems? It was that personality trait that I had to address head on and change in order to enable the healing process. I needed help but help was available. I just was looking in the wrong places before.

I'll give you a little secret I discovered along the way that helped me. That feeling of being a prisoner trapped in your body? Do you realize the nugget of beautiful truth hidden within that feeling? What is the prisoner if the body is your prison? YOU are. And if you are the prisoner and the body is your prison then is not the body just a thing? Yes it is yours to identify with for this lifetime, but it is still just a thing. When you ponder more about the relationship between who/what YOU really are and your physical body there are other profound realizations to be made. The fact that the body manifests mental and emotional issues on a physical level is one. The fact that this process is reversible by addressing those issues and healing them is another. In order for that to happen though, you have to face your issues head on. Only you know your issues, what you need to face, and what needs healing. You may not even consciously know, but somewhere inside you know. Shed your fears and seek your truth. Leave no stone upturned and find them. Heal them by coming to peace with them. Do this and you will soon see the physical reflecting this back to you. It has worked for me and worked for others I know. Anyway, thanks for reading and for your consideration. I hope you feel better soon.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: Down that road again

Postby J4son on December 14th, 2014, 12:47 pm

German2, I have read some of your posts here and let me tell you that you remind me of a guy named Bart1 who used to post here before I even started posting. I’ve read all of his posts, some were greats, others extremely depressive, and the last one was the best.

His whole journey here was as if he was desperately seeking for a doctor who would tell him that he had ALS. He’s whole (unconscious) quest was: Where is that damned doctor who will prove that all the others who said am fine are in fact wrong. So after many years of seeking, his quest for the grail came to an end when he found a neuro who told him it could be ALS. So he freaked out. It’s like someone seeking for days and night for a wolf in the woods and when he founds one he freaks out. Of course Bart1 didn’t have ALS, he had depression, anxiety, stress and a very bleak vision of life. He had the courage to seek help, to stop internet completely and to come back 2 years later in a final great post to tell his story and that he was fine.

You don’t have ALS, you might become convinced of that now, in a year, in five years, ten years or never, but you don’t have ALS. Stop reading blogs. A long diagnosis for ALS doesn’t mean the patient was told for years that he was completely fine. Signs were present from the beginning but not enough for a diagnosis of exclusion like ALS to be made. None of the 5000 members here who received a benign diagnosis developed ALS. The 2 or 3 cases here of people who turned out having MND where all suspicious from the very beginning. It’s not what someone writes in his blog that counts but his medical record, and I doubt any medical record will say that a dude was running a marathon every weekend for 2 years and then suddenly was diagnosed with ALS. Even Dr. Eisen who made the famous study regarding the 6.7% of twitching before weakness said (in his email posted somewhere on this board) that probably these people weren’t correctly checked by a professional.

Health anxiety must be faced head on. You will never cure your health anxiety unless you seek help and stop completely the internet. Even one minute a week on an internet site related to ALS will keep your running in circles.

If you read under General Anxiety Disorder (GAD) on the Mayo clinic website, and in the DSM (Diagnostic and Statistical Manual of Mental Disorders – that gives the criteria for mental disorders) you will see twitching as one of the symptoms of GAD. GAD being an intense worry and preoccupation (on health, work, finance etc.) for more than 6 months. Another study links muscles twitching with chronic stress and stress hormones in the body. We are all a bunch of stressed anxious people here. What do you call someone whom despite being cleared by his doctors remains for years on this website doubting every diagnosis? A normal person would twitch, freak out after Googling, go to the doc, and then when cleared he would get back to his normal life and forget the whole story. Here no, it’s an everlasting spiral of fear, obsession, doubting, depression, anxiety etc.

Most people here had exactly the same symptoms as you, so calm down and face your/our true problem: obsessive concern with health issues.
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: Down that road again

Postby German2 on December 14th, 2014, 2:09 pm

Dear all,

thank you so much for your support! I hope you are right, especially J4son. Thanks!...If it is just in my brain, my new therapist might help. He has told me that he will implement a strict plan with just one doctor's visit a month for reassurance, if he would see from my reports, that I am fine. But it is hard to believe that my strange feeling feet are just in my brain...Hope it is like that...Of course I am thinking that my lung problems were first signs of...it is hell, really. A hell you all might know.
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Down that road again

Postby German2 on December 14th, 2014, 2:55 pm

I mean, two years of symptoms and now I have weak legs and an instable hurting wirst, lots of herniated discs.... When my brain would produce those symptoms, why does ist start right know with weak legs and the feeling like walking on cotton batting..
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Down that road again

Postby LKP1231 on December 14th, 2014, 7:19 pm

I would think herniated disks would definitely give you problems in your legs! That combined with stress anxiety and some of the other health issues you've had would seem to account for everything you're experiencing.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Down that road again

Postby Ghayes420 on December 14th, 2014, 8:26 pm

J4son, that was an excellent posting. Thanks for taking the time to type that out.
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Down that road again

Postby misterjuanperalta on December 14th, 2014, 9:12 pm

How does one know if he/she was properly diagnosed with BFS?
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: Down that road again

Postby German2 on December 15th, 2014, 3:04 am

I am not diagnosed with bfs but with somatic disorder. My emg was not totally clean. The changes are identified as double sided sulcus ulnar nerve syndrom.
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Down that road again

Postby TwitchyDoc on December 15th, 2014, 3:22 am

J4son wrote: Even Dr. Eisen who made the famous study regarding the 6.7% of twitching before weakness said (in his email posted somewhere on this board) that probably these people weren’t correctly checked by a professional.


Pardon? These patients were checked by Eisen himself and his colleagues and on a few of them they performed a series of normal EMGs. So they were under the observation of Canada's best ALS specialiasts.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Down that road again

Postby crotwich on December 15th, 2014, 4:28 am

TwitchyDoc wrote:
J4son wrote: Even Dr. Eisen who made the famous study regarding the 6.7% of twitching before weakness said (in his email posted somewhere on this board) that probably these people weren’t correctly checked by a professional.


Pardon? These patients were checked by Eisen himself and his colleagues and on a few of them they performed a series of normal EMGs. So they were under the observation of Canada's best ALS specialiasts.


TwitchyDoc, but in this case there is an obvious contradiction with prof. Esien's reply to Helen's question about this matter (viewtopic.php?f=5&t=19728):

Helen
I am presently in the UK on partial vacation. I would be happy to write at length, but this may take a while. In any event from 40 plus years of clinical experience it is extraordinarily rare for ALS to truly present with fasciculations and in my opinion if after 8 months there are no other clinical features then it is not ALS. I do hope this reassures
Andrew Eisen MD., FRCPC
Professor Emeritus UBC Neurology

He also added regarding a question on fasciculation distribution
Andrew Eisen
Actually diffuseness is more likely benign since the onset of ALS is clinically focal. Please be convinced that ALS seldom begins as fasciculations. When (or of it does), the problem is that these patients have not been clinically or electrically examined by experts, so that subtle signs of ALS, are very likely to have been overlooked. The bottom line ALS does not present with fasciculations alone, VERY VERY rarely.
Hope this helps


If he (with his team) preformed that famous 6.7% study, and if some of his observed patients had several clean EMG's before developing obvious clinical signs of ALS, I don't understand why he would write:
1. ...it is extraordinarily rare for ALS to truly present with fasciculations.
2. ..the problem is that these patients have not been clinically or electrically examined by experts, so that subtle signs of ALS, are very likely to have been overlooked.

Maybe prof. Eisen doesn't think about himself being an expert. :D
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: Down that road again

Postby TwitchyDoc on December 15th, 2014, 4:57 am

No, you misunderstood. He was referring to a group of patients that allegedly had fasciculations for a long time and later got a dx of ALS. He was not refferring to his study! Because often non-MND specialiast do not perform tests that would reveal subclinical signs.

His text:
Actually diffuseness is more likely benign since the onset of ALS is clinically focal. Please be convinced that ALS seldom begins as fasciculations. When (or of it does), the problem is that these patients have not been clinically or electrically examined by experts, so that subtle signs of ALS, are very likely to have been overlooked. The bottom line ALS does not present with fasciculations alone, VERY VERY rarely.

And this "rarely" he presented in his study - his study proved it can happen, though rarely.

Exact details, including methods can be found in his book ALS: A synthesis of research.

In addition, Eisen's more recent research yielded a bit higher number - 14%. Also to be found in the book I mentioned, page 55.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Down that road again

Postby crotwich on December 15th, 2014, 11:03 am

TwitchyDoc,
I have taken a look at the book you suggested, and yes, it is clearly written on page 55 that 14% of patients had fasiculations preceding other signs of ALS. However, it is also written that their fasciculations were USUALLY associated with muscle cramping, as the initial manifestation. So technically speaking, it seemed like they had BCFS, not just BFS. If in this context USUALLY means more than 75% then we get the number of LESS THAN 3.5% of ALS patients with ONLY fasciculations prior to other clinical issues. BTW, I apologize to people diagnosed with BCFS, it was not my intention to upset anybody. If you were diagnosed by an experienced neurologist, in my humble opinion you don't have to worry about MND.
Last edited by crotwich on December 15th, 2014, 1:19 pm, edited 2 times in total.
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: Down that road again

Postby Little Lost on December 15th, 2014, 11:10 am

Perhaps I am wrong but the 14% study was based on data gathered from 258 patients between 1987 to 1992, ( 22 to 27 years ago).


Quote : From Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice (revised edition 14th December 2006)

Out of a total of 258 patients with ALS examined by one of the authors (AE) over a five-year period between 1987 and 1992, 36 (14%) had fasciculation, usually associated with muscle cramping, as the initial manifestation of their disease. The mean time interval between developing fasciculations and other clinical manifestations of ALS was 7.6±3.4 months (3 to 11 months) (Eisen et al., 1992).

For those concerned please consider the following,

a) emg as a diagnostic tool in 1992 was not nearly as advanced or accurate as it is now, parameters were wider, measurements fewer, and certain software now routinely used, was in infancy.

b) Back then ALS criteria for diagnosis was still disjointed, and the disease itself not so extensively studied. One of the reasons for this book, and the studies it pools together, was to educate neurologists on identifying, diagnosing and treating this rare disease at an earlier stage.

c) 14% was Eisen's opinion way back in 1992, his email to myself was his personal opinion some 21 YEARS LATER in 2013. ( now with 40 years clinical experience and more advanced EMG). Interpretation and relevance of clinical examination for UMN signs of ALS were pretty basic then.

d) All this talk of 14% and 6.7% regards fasciculations, lower motor neuron signs but does not talk about the upper motor neuron signs that may have been present in these patients presenting with the fasciculations. This is what Prof Cav was saying ( remember in his email and although his first language isn't English you get the point)

Quote: As you can imagine I have many similar patients in Portugal, asking my opinion. I have observed many paients with bening FPs, I do not remember to be wrong about the diagnosis, benign FPs vs ALS. The reason is simple. ALS pts tend to have upper motor neuron signs at presentation.....etc etc ).

So one may argue based on Prof Cav statement that in ALS by the time fasciculations appear then upper motor neuron signs should be present and picked up on the clinical. This may indicate a different point of origin between benign fasciculations and pathological fasciculations. By this I mean they may not have the same physiological origins, they both may be generated by different pathways, different processes. Think lung cancer and the common cold, each produce a cough, but the origins of the cough are very different. Shared symptom, but different starting point, hence why benign fasciculations most often never become pathological ALS ones. As a cold does not normally become cancer.

Anyway those are just my thoughts on the 14% study.

Quote that I think TD was referring to

From Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice (revised edition)

Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice Paperback – 14 Dec 2006
by Andrew Eisen (Author)
Last edited by Little Lost on December 15th, 2014, 12:06 pm, edited 1 time in total.
Little Lost
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: July 3rd, 2013, 7:17 am

Re: Down that road again

Sponsor

Sponsor
 

Next

Return to The Support Group

Who is online

Users browsing this forum: Bing [Bot] and 3 guests