Denying ALS Diagnosis

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D

Dianabol

Member
Hi all,

The hallmark of ALS is weakness and cramping with fascis, and I have all of them. I am quite sure I have ALS but I am in a state of denial. I refuse to see a neuro or take EMG as I am sure that my self diagnosis is right and that my symptoms can't be caused by anything else. If I have only fascis, I will surely go for EMG to dispel my worry, but now, I think I rather stay in a state of denial than get the confirmed diagnosis. Do you know what I mean?

I started having pure fascis 2 years ago. I am not too bothered by it because I have read up about BFS and I think my condition is benign. 2 weeks ago, I started noticing tightness in forearm and slight weakness in my grip in my right hand. It is most obvious in the morning. When I brush teeth, for e.g, I can feel some soreness/slight pain in the forearm near the elbow and my fingers would feel weak. The uncomfortable feeling in forearm is constant the whole day. I know it is not functioning properly because I can't get a good grip on the toothbrush unless I concentrate. But yet, I can still make quite a good fist/grip. For sure, there is no clinical weakness yet BUT I can feel the loss in strength, perhaps, 10%. I know my own body. There is also occasional twitching/fascis in my forearm muscle when I use them. My own guess is that the muscle in this forearm is losing neurons and hence the cramplike and slight soreness, which leads to the slight weakness in fingers. I can't seem to find any other explanation for my condition. About a week ago, after I shook hand with a guy, the whole forearm muscle will twitch/fascis for about 10 seconds. Something is wrong. Can

And this is not all. About 1 week ago, I noticed tightness, stiffness in my right calf. There is no soreness, just a heavy feeling with very very tight muscle which is hard when compressed. If I don't stretch it out and walk slowly to warm up the muscles, they will cramp up when I walk. Even when I walk for about 200 yards, the cramplike feeling will come and I have to stop. I don't think there is weakness, but I definitely can't run now, whereas I had no problems before. Something is not right. There is also fascis in calf, thigh, body, shoulder occasionally, lips, chest, hips, face, back..all over but not frequent. But this fascis has been ongoing for 2 years. But there is increased fascis in right forearm and right calf. I feel that my right calf is so hard to the point of being slightly spastic.

I am looking for people who might have such symptoms. And please do not ask me to do an EMG. I rather do not find out so soon, so that my body might recover spontaneously. If I get a confirmed diagnosis now, I am sure I will spiral down very fast. In my case, I guess only time will tell and that's exactly what I intend to do. Medical science have nothing to offer for this debilitating condition.

I used to belong to this group, but I think my condition is slowly moving me to the "other" group. I really appreciate frank opinions on my conditions. By the way, I am 39 yo male.

Can bfs exhibit symptoms such as mine?
 
Hi all,

Thanks for the encouraging words. I don't know...I really hope that it's benign..but, my condition has not improved at all. Today, I was clicking the mouse surfing the internet, after just 2 - 3 minutes of clicking, the muscle in my right forearm becomes very painful and cramp-like feeling increases..kinda like lactic acid buildup. I have to stop clicking and after a good 20 minutes, the pain/cramp subsided. I know bfs can result in exercise intolerance, but this is not even exercise! I could click for the whole day before. I read some of your complaint about exercise intolerance but from what I have read it's just like feeling more fatigue after 30 minutes of heavy workout. At least it's from real workout kinda fatigue. I am really worried that this is dying off of neurons in my right forearm causing this. And I don't have other illnesses that might cause this. This is most frustrating and the feeling of helplessness is overwhelming.
 
You do not have BFS. I can bet my life because I also have these similar symptoms you describe. I constantly think about my forearms when I am brushing my teeths, using the mouse, typing notes at the hospital, even when I am checking on my patients. I constantly think about my perceive weakness to the point that I am hypervigilant and ask my 11 year brother repeat similar maneuvers for reassurance. As I am typing my fingers and forearm are sore. Take care and know that you are not alone
 
Hey Constante,

Sorry to hear about your issues. I have been twitching for about 15 months. i am a 37 year old male. Lately i have been struggling with my symptoms also. I do know how you feel. i can barely do anything w/o pain/cramping,twitching/fatigue. It is very very frustrating and scary. Your symptoms sound like mine and many others here.

The arm issues could be carpel tunnel. It effects the whole arm. You could have an NCV instead of an emg to see.

There are many things that can cause these issues. Anxiety, OCD, Chemical imbalence, toxicities, metabolic the list goes on.

It is your body and your life. The decision is yours to make. However my advice to you would be to take the next step. Go see a neurologist. The chances of you getting better are FAR greater then you having als. Which you don't have. Never ever has someone twitched for that long without severe weakness by now. Isn't that worth trying?

trust me I struggle daily. Sometimes I want to give up. Even if you are scared, do it scared. Don't wait for the John Wayne inside to show up. Grap a stuffed animal, a bible scripture, lucky sock or whatever and get going.

I will pray for you.

DD
 
constante, it's most likely that if you have an EMG it will be negative for ALS, and that it still won't convince you that you don't have ALS. I know, because it didn't convince me, both times I took one. I didn't believe my doctors, I didn't believe my family, I didn't want to believe anyone. I had convinced myself I had ALS, and nothing, but time, would convince me otherwise. It sounds like you are in the same frame of mind I was.

Well, guess what? I never did have ALS. It's now eight years on and my symptoms are the same, minus the ones I imagined or that were brought on by anxiety and depression. It took me over three years to rid myself of the anxiety over ALS, and it was only with the help of medication and counseling.

So I hope that the responses here have helped calm you, but I would not be surprised if they don't. The odds of you having ALS are minimal but, as I found out, it is very easy to push yourself into believing the worst, and much harder to stop believing it.

My advice is, if you can't rid yourself of the worry, then do something about it. Get help from a psychiatrist or seek some counseling. It never hurts to talk things through. I wasted two years of my life dwelling on dying when there was nothing wrong with me physically. I'd hate to think you are about to head down the same road.
 
Hi all,

Once again, thanks so much for taking the time to console me. It's true that I have been twitching 2 years but the latest onset of cramp/pain is something new and it could be the start of something sinister. If it is there once in a while, I wouldn't bother too much, but the slight pain/cramp in forearm which increases in intensity shortly after use has not gone away for 2 to 3 weeks now. It is bothering my work and life. As it is, I feel that there is slight loss, maybe 10-20%, of strength in the right hand fingers and I fear that this could be the start of a downhill battle. I still can make a firm grip though. It is just the feeling that I need to apply more force to make a good grip. Hard to explain the feeling. What if the pain and cramp never goes away or if the weakness progresses? And my right calf is also feeling tight/crampy. This succession of symptoms is what is worrying me, not the fascis. I know, just as you said, that only time will tell. This is a very difficult period for me. I wake and pray that my pain/cramp will miraculously go away one fine morning, but so far the fine morning has yet to come, and my spirit is running very low. Do you think it will go away in maybe 1, 2 or 6 months time? I don't think I have carpel tunnel or ulnar nerve entrapment as there is no tingling, burning or numbness. Only pain in the forearm muscle. I don't strain them much and I can't find any other reason for its continued pain.

Thanks again for listening to my whining. Appreciate any further opinions and comments.
 
Great advise Tacitus! It is a mystery to me why with the symptoms we have that it is so hard to believe we are well even after the tests are done. Thank you for having the courage to say all that you did, because for whatever reason, many of us are still doing some of those same things and wondering why. There is probably an answer to it in our personalities, in the type of symptoms we experience and as part of the physical manifestation of the syndrome itself, but it's the big unknown right now along with why we have the symptoms at all.

And Constante, it's not whining. I always felt like whatever was expressed here honestly is probably felt by more people than just who is expressing the feeling, symptom or emotion. It's only be being really honest that we'll get to the root(s) of the problems we are dealing with.

I was having a very hard day and I am so glad to have all of you here to relate to :D)

Take care,
Sir_Trouserz
 
Constante,

"I fear that this could be the start of a downhill battle.....This succession of symptoms is what is worrying me, not the fascis."

I can feel the fear you're experiencing in your post, and I've been there. However, negative self-talk is a powerful and vicious cycle.

Start telling yourself that the liklihood your symptoms will improve is much more likely than the alternative. I read your story. I understand you're feeling scared. Early on, I couldn't go to a grocery store for fear the line would be too long and my legs would start shaking while waiting. Today I went on a 15-mile mountain bike ride with my wife.

I know this sounds overly simplistic, but it helped me. I told myself that my body is strong and I will get better.

Also, I would recommend you choose to either get further testing or tell yourself that you've got BFS and these are the symptoms. It sucks to keep telling yourself that you've got ***. If you're going to avoid the testing, then at least get some positive benefit out of it (by diagnosing yourself with something less sinister). This way you can start enjoying your life again, and speed your recovery.

I hope you will try telling yourself that you're ok. Even if you don't believe it the first 10 or 20 times, eventually you'll start realizing that the only possible outcome of this is not the worst possible outcome! In fact, with two years under your belt, I'd say that what you're experiencing is a flareup of BFS symptoms. Also, when you freak out about it, your body starts producing adrenaline and all kinds of other chemicals that can make matters worse. To your body, constantly telling yourself that you've got some horrible disease is like panicking when you see a lion that's about to eat you, but then strapping a steak to your chest and going for a walk in the brush every half hour, calling “here, kitty kitty”. And not getting the testing is like constantly playing a scary-ass recording of a lion behind a curtain, and never opening it to see if there's really even one back there.

You're strong and you're going to get better. Allow yourself to consider this very likely possibility.

I hope you sleep well tonight.
 
constante, the problem is that some of your symptoms could be manifestations of you state of mind, and without seeing a specialist, you will never know.

As I mentioned before, I can relate to what you are going through. I was convinced I had ALS and nobody could tell me otherwise. I even thought I had started experiencing difficulty swallowing, feeling a tightness in the back of my throat that made me feel even worse. But guess what? It was all in my mind. The fasciculations are real (I'm getting them as I type, 8 years after this all started) but much of the rest of the symptoms were just part of my freaked out imagination.

You really should get help. See a neurologist first if you can, and they will be able to give you an unbiased opinion (you are too biased to do that yourself!). Then, if they say nothing is wrong (as is the most likely case) and you find yourself still in a panic, then get more help!! Go talk to someone, a professional, who can help you get through this.
 
Hi all,

I am really worried about the weakness in my hands and legs, ESPECIALLY in the morning. My calves are stiff, especially my right calf, which almost always cramp up when I take my first few steps in the morning. When I try to move my ankle up or down in a sitted position, I can move them alright but they feel a bit tight, like the calf muscle are not fully relaxed. This crampy muscle, mostly in right calf and right forearm, is really bothering me. I really fear that they are deteriorating. The twicthes are occasional in different areas. My weakness is more pronounced in the morning and gets better after I struggled to limber up, almost like once they are up and going, the weakness is less. I think the weakness is not perceived, it is real as my legs get shaky especially in the morning and my fingers will have trembling/tremors which gets better later into the day.

I do not know how long more I can last as the weakness and the tight cramplike feeling might begin to interfere with my ability to do things if they worsen. This board has been my only source of hope. I thank you all.
 
Hi Phistar,

I don't have objective weakness, meaning I can still do all the tests you described, but I have to strain a bit to do it. I am worried about the subtle loss of strength that only I can feel. And it is not imagined because, just yesterday night, I woke up in the middle of the night, and the muscle of my right forearm begins to twitch very finely, almost like a very small CONTINUOS vibration/tremble just in the forearm. No tingling/numbness. On top of that, there are 7-8 twitches in the forearm muscle. Is this a sign of muscle dying off? I am so worried and hope for some reassurance. Everything just points to something serious happening. Anybody has what I describe? If yes, please let me know.

Thanks a lot
 
hey constant...
in big letters for you:
PEOPLE WITH ALS DONT FEEL PAIN WHILE USING THE HAND
you just drop things ... and wonder why !
i see you in front of me: testing your arm over and over again. you wreck your forearm.
i have the same sensations you are describing... but i overstrained it, just as you did.
but we can talk for hours and hours, once again, you have to see a doctor to get your peace back !!!
 
Constante,

I have similar symptoms you are experiencing. I feel like my forearms and calfs are going to cramp up if I do not move positions or stop what I am doing. These past weeks I have been on a medical rotation for 5 weeks. during this rotation, I average close to 15hr daily schedules and every 6th day I have to stay up for as long as 30hr per call with no sleep or rest. I am not sure if it is the long hrs that are responsible for my twitches, but I am starting to feel cramps as well. I am a little worried because I never have had cramps in the past. I can feel them coming but changing my positions helps them from getting worse. I feel as if I keep my position these cramps will only get worse. I am extremely worried becuase I notice that my twitches are superimposed on these cramp-like feeling. I would appreciate any suggestions. Anyhow, you are not alone on these symptoms. I also think about my fiancee and what life would be like if it is ALS. I am worried, but at the same time positive that I do not experience any clinical weakness or atrophy.
 
Hi constante,
I'm not sure how else we can help you. We've tried to answer all of your questions, but you don't want to go see a doctor, and you don't seem at all reassured by the multitudes of responses you are getting, telling you that we all have had similar symptoms and experiences.

YES many of us felt so shaky and crampy and weak that we, too were convinced that we were dying of something at some point in our journeys. Why do you think you are so different from the rest of us? Gary and I both told you we could barely even walk. The widespread (rather than focal) nature of the presentation you are describing points AWAY from it being **S or anything else serious, for that matter. One of my neuros told me just that-he said "you have too much going on at once for it to be something serious." You see, NMD's tend to start in one limb, and progress from there. Not in the arms and legs or the feet and hands concurrently. One spot. They generally do their damage and move onto the next spot.

You are 39 years old, and you have a beautiful family. You owe it to them and yourself to get your act together, here. How can you be an effective parent to your children if you are so freaked out about an illness that you don't have? What if your symptoms are caused by something treatable, like a thyroid disorder or an electrolyte imbalance? Or a post-viral syndrome? Or anxiety? Wouldn't it be better to just KNOW what it is, so you can get ON with living already?

It isn't that you aren't welcome here, it is just that we can't help someone who isn't ready to be helped. We won't give up trying, but you have to do your part as well.

There have been countless folks here who have even gone to the doctor, had the appropriate exam and diagnostic testing and yet STILL refused to believe that they were okay. Does that mean they were really sick? Did they actually have **S because they couldn't be convinced that it could be anything else? Of course not. Sadly, these poor souls wasted months, even years of their lives fretting and obsessing over a disease that didn't belong to them. What did they have to show for it? I'll tell you what they DIDN'T have, and that was **S.

Like you, there have been many visitors to this board with similar symptoms, myself included. Some "get it" right away and are immediately relieved and ready to roll. Others take a bit longer. I'm not rushing you, of course we all move at our own pace, but there is nothing more frustrating than watching someone struggle needlessly. What can we say to make you believe you are well? What can we do to convince you to go see a doctor and have an exam? Just say the word, and we will do whatever it takes.

Blessings,
Sue

ps-and STOP Googling. It is literally ruining your life.
 
Constante you have obviously read cramps can be one of the first symtoms of ALS but when it comes down to PALS, thier own stories cramping is hardly a first symtom and they suffer [only some]later in the desease with cramps that become extremely painful obviously caused by the whole process of the illness, dont worry about the cramping my wife and sister gets them all the time its can be down to deficencies.
 
constante,
I wasn't trying to scold you, just to shake you out of this.
YES, what I'm saying is that my symptoms were just as bad (if not worse) than yours.

I couldn't drive myself to work, my right leg just wasn't strong enough to step on the brake pedal. I couldn't grip finger foods to feed myself, my hands were so clumsy and weak. If I would try to stand up, my entire body would shake from head to toe. I would shuffle to the bathroom and go back and collapse on the couch. That was my day. I couldn't hold my head up, because my neck felt too weak to support my fat head. :mad: To get up and down stairs I had to hold the railing with both hands and pull myself up every painfully slow step. I felt this way ALL THE TIME, and NO, I never had a lull in my symptoms. Not ever. I would wake up in the morning and my limbs felt like lead, throughout the day...lead...when I went to bed at night...lead. It was an effort just to throw the blankets off of my body. A few people here on this board even told me they thought perhaps I didn't have BFS, because I was SO weak ALL of the time. So, believe me, I know how you feel.

Yet, my weakness wasn't clinical weakness. When the neuros checked me out, (multiple, MULTIPLE times,) I was shocked every time they would say "your strength is normal." I would think "WTF?"

Heck, my husband had bfs and he even had the same fatigue you are describing (still does, sometimes.) He has to switch hands when he blow dries his hair or speaks on the phone. He used to complain about it ALL the time, but now he's gotten used to it.

It was the anxiety and obsession over my physical symptoms that was escalating my weakness. Your mind is very powerful, my friend.

There was another poster, Val2, who had a doctor actually tell her that she had atrophy. :eek: She felt exceedingly weak and was certain of her impending demise. Puggriffey is another who went all the way to Mayo Clinic and had as severe symptoms as any. Both were ultimately dx'ed with bfs. Do a search on their posts, and you will see.

Please trust me, you are not alone here. And no, I'm not frustrated with you, I'm frustrated that we can't seem to help you, and that you are suffering.

Blessings,
Sue
 
Hi

Seeing as your are not comfortable or ready to see a Neurologist, I suggest you run your symptoms past a reumatologist (excuse spelling).
Not nearly as scary and you might find you get a perfectly reasonable explanation as they are well versed in the muscles and skeleton.
It's disturbing when your symptoms are giving you so much trouble, but something simple could be found that could be corrected. I wouldn't focus on ALS as you stated that your feelings of weakness improve as the day goes on and this most certainly doesn't happen with ALS symptoms.
I really don't think you will find your answer on the here or any other forum for that matter you really need to run your symptoms by a professional and then you will have peace of mind.

All the best
Sharon
 
Constante,

My feeling of weakness was like yours, not just tired, not just fatigued after exercise, it was like yours. Listen to Sue because I remember her telling me how weak she was and it was pretty bad. I myself was pretty weak could barely walk up the stairs and if I held anything in my hands or arms then I would shake like crazy and not just externally, internally as well. One night the shaking woke me up out of a sound sleep, it was like I was having an internal seizure. I held my hands out and there was nothing on the outside that showed I was shaking so bad on the inside. I still shake when I hold a phone or anything like that, my arms still get fatigued easily but I was like you in the beginning.

Pain IS NOT associated with ALS, they do not get pain. Think about it for a minute, what is the main symptom of ALS? CLINICAL weakness and they first notice symptoms of foot drops and when I say foot drops I mean it literally drops cannot use it whatsoever, ankle turns in and is dead cannot move it..Also clinical weakness means you cannot use the limb AT ALL.

I know what you are doing to yourself, I did it to myself for way to long. I was one of those that did not catch on to quickly like Sue mentioned.. :) but thank God I did start to listen.

I do know that once my anxiety calmed a bit my arms were not so tight, not so fatigued and the same with my legs. I was so tight from anxiety that my reflexes came back abnormal, and the Dr. looked right at me and said it is because you are so anxiety ridden over this. He was right, they did calm after my EMG and they came back normal , well not my left completely but much better.

You are holding yourself tight I guarantee it. Now I am not saying this is all of your problems but you are making this worse, I promise. Take some time today to watch or feel how tight you are in certain muscles. I had my whole upper body so tight that even my hands were clenched most of the time and I bet this is your problem, and you wonder why your hands hurt or are fatigued....your muscles are constantly being clenched. I was even holding my chest a certain way which was screwing up my breathing and my upperback muscles.

Now call the Dr. today because you will be so happy after you get a clean bill of health....God Bless..Hugzzzz..Jenn
 
constante

You have had great inputs from others with your same sxs. I could pick all your sxs and see that I have experienced every one of them at one point or another. Maybe see another neurologist but it won't make a difference it is BCFS/BFS. THERE IS ALOMST NOTHING NEW IN ALL YOUR POSTS THAT WOULD BE DIFFERENT FROM EVERYONE ELSE ON THIS BOARD...MAYBE VERY VERY VERY VERY LITTLE!

The wrist, hand and forearm thing. I have had that shyt from day one! Move on! LET ME KNOW WHEN YOUR TONGUE CRAMPS. You provide absolutly nothing new other than refusing to go see doctors to get cleared from by different doctors.

Occasionaly we need a kick in the rear to get us back in line. I get frequent kicks in the asssss by others on this board since I tend to drift into theory land. Does your rear hurt now?
 

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