Five months this Monday- still doubtful

BFS Online Support Group

Moderators: JohnV, Arron, garym

Re: Five months this Monday- still doubtful

Postby leaflea on June 18th, 2014, 6:01 pm

nk - I also have the yawning and yawning in the morning is NORMAL. I also have the shaking first thing on awakening. It happened like clockwork every morning for weeks, then stopped for weeks, came back for a few days and is now gone again. It is not unusual with bfs, but never heard of it with als.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Five months this Monday- still doubtful

Postby Yuliasir on June 18th, 2014, 10:47 pm

but why do you read horror stories? what do you know about the people writing this stories? can you asses a population rate of those stories (how often they happen)? Do you know that people always distort a bit (and often alot) what they believe to remember 100 %?
look, ALS is the disease at which of course patients appear to be really reluctant to go to neuro (this is reported quite often) despite on obvious neurological loss, but still, it is so debilitating, that vast majority of patients nowadays (and this is at lweast the last 50 years or so) are registered in medical records so stats are very proven and settled. We all (and the doctors) know quite well how the onset of ALS usually happens (in all varieties), what age groups are more prone to ALS, we all know two or three exceptional outliers like Mr. Hawking (who both had unusually early onset and incredibly long survival). People having unusual ALS onsets or courses become a subjects of medical journals publications and are well known. So all this forms a stats which say: 4-6 months without any sign of specific neural damage - and you do not need even an EMG in most cases.
As for what you can read on the forums... I personally had seen on our local ALS forum tons of people obviously suffering with benign fascics and obsessive disorder, and moderating neurologist had really to push them out becasue they were annoying and persistent and full of belief they have ALS and just need a good non-stupid neuro to be diagnosed and get their death sentence. So you never know really who is writing such horror stories and why and if they are self-diagnosed or not.

We had here a fellow who was so much convinced he has ALS that our moderators really had to ask him to provide a copy of medical conclusion or so... Some time ago that person came back and told us that he really had severe obsessive disorder and that he apologises for mischief and misleading posts and comments, and that there is no ALS in his case and that he undergoes proper phsychological treatment for his actual disease (obsession).
so this is a good example of the fact that those horror stories must not be taken too close as they may be 1) not true 2) distort the real situation with the person writing the story 3) percieved by you in your case as horro and related to yourself while all people are not the same and what had happened to one person not necessarily may happen to another one.

unfortunately, in our diosrder, in BFS, anxoety is a very frequent comorbidity, and our criticality is low... so do not expose yourself to horro stories elsewhere. come here we have a lot of antihorror stories - tons of people suffering like you and now healthy
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Five months this Monday- still doubtful

Postby J4son on June 19th, 2014, 2:47 am

It’s incredible how people can spend months or years fearing a disease while never developing the main and hallmark symptom of that disease which is weakness. It’s like fearing deafness while hearing very well. If someone let’s say have a stomach pain and fears a stomach cancer. He goes to his doc, the doc undertake an Endoscopy and tells him “No Cancer”. If the guy still fears cancer, then his case stops to be a gastroenterologist case and becomes a psychiatric case.

It’s the same here. Someone can never develop the main symptom of ALS which is weakness, can get all the reassurance of zillion of neurologists, and still be freaked out of ALS. At that point I don’t think we can talk anymore about BFS, CFS, PNH, ALS, MS, or any other neurological condition, but we should start considering depression, hypochondria, health anxiety, general anxiety disorder, nospohobia, PTSD etc.

Yesterday on TV they were talking about the ex-number 1 French tennis player Jerome Golmard who was recently diagnosed with ALS at age 40. When I heard about his case I found how different a typical ALS case can be from all what we read here. It also joins what Yuliasir said about ALS patients being reluctant to see a doc. At no point Jerome mentioned anything related to twitching, cramping, or sensory stuff. He said it all started in July last year with extreme fatigue and balance problems. He described fatigue as being forced to sleep 14 to 16 hours per day, not the kind of fatigue where we feel a little lack of energy. Two months later in September he started falling, tripping and couldn’t run anymore. In November after 4 months of very concerning symptoms he started noticing atrophy in his left leg (Atrophy months after weakness, not like what people on this board seems to think: You can get atrophy everywhere and still climb the Himalaya bare hands) . He went to the doctor in December (5 months after very obvious and concerning symptoms), and was diagnosed mid-January 2014. In February he was in a wheelchair. And today less than a year after the onset of his symptoms his legs are completely paralyzed except for the big toes.

This is how ALS works, Fast and obvious. Not months or years of odd feelings, unclear symptoms and wondering.
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 20th, 2014, 1:27 pm

Wow, I see. Hard to change your ways after months. I mean, even today I seem clumsy as I dropped two things in two minutes and have intense knee pain since yesterday. Somehow my mind instantly runs to the worst I can find..
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 20th, 2014, 1:28 pm

My anxiety seems a bit over the top since I couldn't sleep last night and the twitching got worse as the night progressed. I also seemed clumsy/somewhat sick at work yesterday. Knocked over some blood filled tubes twice.
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 23rd, 2014, 3:45 pm

Went to bed last night and my thumb twitched four times. Never had that before and woke up to my knee going crazy. This SUCKS. How can you be so sure it's benign?
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby J4son on June 23rd, 2014, 5:44 pm

How can we be so sure it’s benign?

Well for many reasons:

1) First because you had several medical exams, one of them done by a neuro. These guys have seen MND and ALS before, they know what they are talking about and if they are saying u’re fine so u’re fine. Seeing three doctors and then doubting what they said and coming here to ask non-professional people over a computer screen for a diagnosis is illogical :)

2) Because you are 21 and ALS at 21 is extremely extremely rare, and ALS at 21 starting with twitching without weakness would be a medical oddity, maybe the first case since Hippocrates of Cos.

3) Because you have a history of health anxiety….

I think that at 21 you have better things to do than wasting your time hiding from shadows…
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 23rd, 2014, 6:06 pm

I'm 22 now. Started a month before my 22nd birthday. I know it's rare, but how many 22 year olds do you see with bfs? With twitching like mine? That's also rare. I haven't had a medical evaluation in months. The last one I had was by the neuro and approximately 3-4 weeks into twitching. Give or take a few days. Does it matter when I had my clinical exams? As long as it's after twitching am I ok?
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby Yuliasir on June 23rd, 2014, 11:35 pm

holy crap, who told you that people of your age can not have BFS (or rather say, a combination of BFS ans obsessive disorder, as BFS itsef - only nonstop twitches obvious at the medical exam, like in Matt's bobajojo case, are really unfrequent)?
read this site. Most of the fellows are from 15 to 35, in their most fruitful years, and almost everybody twitch as a new year tree at some periods. Please get clear that you are not unique neither in terms of your twitching rate or type, not in the family story, age or course of disorder. I do not meant to undermine your personal onliness, but in terms of medcial condition you seem to have (may suggest a bout of obsessive or anxiety disorder, and the age of 22 is also typical for the onset), you present absolutely common case.

I am really sorry, I used to be a good nanny here for many months but now I am afraid I become too sarcastic... You say your thumb had twitched four times and this had get you crazy. Well, first I read "four hours", and I know some people here who could not sleep becasue of constant twitches. But having a sleepless hour or even a night becasue of four times twitching thumb means clearly that therer is something really wrong going in your nervous system, not neurologically but psychologically wrong.
You had seen a neuro, and neuro had cleared you on the basis of clear clinical criteria, not becasue he or she does not want to bother with you or does not want to tell you bad news, or whatever.
But I am 100 % sure, should you visit a psychoneurologist or psychiatrist, you would get a clear diagnosis, a treatment assigned and probably you would be cured (probably - becasue in that case cure depends strongly on the willingless of the patient, which is called 'patient's request"). Saying cured I mean not releived from twitches, but relieved from that really uncomfortable knid of living you have now - from fear, from feeling being doomed at young age, from wasting your life, etc. Maybe from the feeling that you are unique in your perceived ilness too (but insted it may geive you a great feeling of a victory on a real disaster going to eat your life. Many people live in OCD/GAD just wearing it as a millstone on the neck, and only a few decide to cut the rope and get free).
I do not know if you really want to be cured of all the aforesaid. I am GAD person since I was 6 yo, and I am twice older than you, ans I had lived almost 30 years in tortures of daily fears, it composed my personality and I know that we are the people who really need a disaster to be fully functional (or to feel we are fucntional). But I had 5 years of psychotherapy experience and it had changed me alot.

With the time I am also going to be free ffrom the feeling like all people like me need 'rectification' and therapy etc. But if your life becomes miserable (as was mine at my 37 when I had started a therapy), then correct treatment is what you would need :)
We can not find an answer or treatment at the neuro office. But if we cross the road and go to psychoneurologist, therapist and psychiatirst for evaluation and treatment, we may get both answers (however not 100% full) and a treatment which is quite efficient. But the discoveries and the findings on that way may be really shocking :)
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 24th, 2014, 12:05 pm

I'm crazy. I even worry about stuff I couldn't open in the past. Like having to use my hands and teeth to open a sealed ham package. I bought another and opened it with ease. I had an episode where I couldn't open apple juice and I asked my brothers gf and she couldn't ether. My brother got it easily. I also had to get my gf to open a package of chicken nuggets last week. I went back today and opened it from the other side. Tell me I'm nuts. She had me open a cereal box the other day but I don't care about that. That *beep* ham package, apple juice bottle and nuggets!
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby Yuliasir on June 24th, 2014, 12:46 pm

it happens to everybody (I mean difficulties with the bottles, boxes etc.). I am reading a book about neurologically impaired people and believe me hteir symptomes are not subtle at all. As for being nuts, ugh, I feel you are... but pick any of the fellows - once they were exactly like you.
Being nuts is a part of BFS circus (GAD or OCD part) and eventually it goes away... sooner or later...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 24th, 2014, 1:39 pm

Ugh, after five and a half months you'd think if stop. It's like I have nothing better to do. I just opened and closed peanut butter jars. The bigger jars are harder to open with thumb and pointer finger than the smaller jars.
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby Yuliasir on June 24th, 2014, 10:03 pm

ha, do you know what you did right now?
the jars are not intended to be opened with two fingers only unless you are Ivan Poddunby, famous Russian wrestler from early 1900 :))) so you got injured your thumb and index finger tendons and for a while you would have a pain, some twitches etc.

we had here a lady who was obsessed in the same way like you. she said she was moving a flower pot of about 20 kilo with two fingers to prove herself she is strong. Result was an injury.

I am sure on my owm experience and on the experience of the countless fellows from the board that selftests are really bad habit becasue they are obsessive and restless and we usually apply much more load to the muscles and tendons than it would be reasonable.

in fact, you do not need to open jars, lift the irons with the pinky toy or walk miles on the heels or toes. or jump 10 staircases just to have a dislodged vertebrae, like it was with another fellow here. true weakness tests, if ever, are simple. Doctros never ask you to open jars. they ask to hold their finger in your fist or pick up a small object like paper clip. They do not ask you to make one leg squats till the black stars in your sight, they just need to see if you can stay or walk three -four steps on the toes and heels - not miles.

self testing is a ruining activity, believe me.
especially consider that you are in obsessive mode of thinking and you would never be satisfied with the result. |You would repeat it until the major acute or chornic muscle injury, I had seen that already. Please just try to stop. you need to concentrate on how to get out of obsession not on how to get deeper in it.

AND OF COURSE BIGGER JARS ARE HARDER TO OPEN! They have bigger opening, therefore longer rim thread, therefore simple school physics says that you need more force to be applied... oh boy, does such simple finding worth your slepless night in the kitchen?
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Five months this Monday- still doubtful

Postby Nk904 on June 25th, 2014, 12:16 pm

The more I look the more I find. I swear my left hand is smaller/atrophied than my right. To make matters worse I can see a twitch in my left hand that I don't feel. None in my right. I'd upload a picture if I knew how.
Nk904
Member
Member
 
Posts: 22
Joined: April 30th, 2014, 4:02 pm

Re: Five months this Monday- still doubtful

Postby Yuliasir on June 25th, 2014, 1:00 pm

Honestly, had you ever considered a psyhological counseling?
I know it would not kill you (OCD seldom kills) but it is just a pity to see how you are getting in that self-torturing mode...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Five months this Monday- still doubtful

Sponsor

Sponsor
 

PreviousNext

Return to The Support Group

Who is online

Users browsing this forum: No registered users and 6 guests