Old 03-02-2018, 03:03 PM #1
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Default looking for advice about my symptoms

Hi All, can't believe I have arrived at this point. First let me say my heart goes out to all that have been diagnosed with this awful disease. I have the a ton of respect for all who work hard to support people like me with whatever they may be going through. I will try to keep this short.
March 2017, I experience blood in my urine. I start the medical process and for the next 3 months I have cystocopy, prostate MRI, abdominal ultra sound. Two lesions are found on my prostate and a prostate biopsy is performed (btw, I am a 42 year old at the time and father of 4). I get the news in June that there is no cancer and I am diagnosed with HGPIN. I then have 2 épisodes of rectal bleeding that throws me into a tail spin. I have several scans and a colonoscopy to rule anything out. So basically I had a rough start to the year with a lot of stress and anxiety. What brings me here stated in July also. Went for a walk and for the first time I felt my legs were a bit off. Felt weird around my hips. For the next 10 days I find myself knocked on my butt. Lost a few pounds, loss of appetite, vomiting, depressed. What a way to spend my vacation. Started feeling a bit better but the legs were still off. Went camping and felt fine. Hiking, camping, all the fun stuff. Went to see my doc in October about my tired feeling and wobbly legs. The day after I see her was the day I first notice my left calf slightly twitching. Here comes dr. Google and from that day forward it has been a living hell. Within 4-5 weeks I can feel twitching all over. I would say they are 60% in my legs and 40% all over. Arms, stomach, butt, thighs, back, face, even 1 on my head! The past week I had my right quad going crazy as soon as I relaxed. It went on for 3 or 4 days straight before it stopped. A couple days later my left quad in the exact same spot is doing the same thing. Hoping it stops soon. And they a huge! I can see my pants above the knee actuall move. They come and go but are usually felt daily. Cramps begin in both calves but not the kind of cramps that will make you scream. Just annoying. This has now gone on for 4 months. I am completely consumed by trying to figure out what is wrong with me. I have no weakness that I can tell but I am tired and my legs still feel off. I have never dropped anything or tripped or fallen. other little things I have noticed are the shakes (I hold a water bottle and within 10 second I am shaking. All 4 limbs do it. My shoulders feel heavy at some points but I am always able to do whatever I need. My next step is an EMG next month which I know will give me some answers. I thought in the mean time I would ask the opinions of the people that have lived this. Any reply or opinion would be so greatly be welcome. The stress and anxiety is killing me and affecting the house. All I seem to do is stare at my legs and freak out every time they twitch. Help!!!
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Old 03-02-2018, 05:42 PM #2
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Default Re: looking for advice about my symptoms

Nothing you describe sounds like ALS to me. You do need to see a doctor and get some blood work done. Start with your GP and take a list of your symptoms and your past history.
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Old 03-02-2018, 06:16 PM #3
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Default Re: looking for advice about my symptoms

Agree with Kim 100%. You have something going on for sure but it doesn't fit the pattern for ALS. It's very clear your body has had a fair amount of shock, with all the procedures and illness. However, with all your symptoms, it's not coming across as neurological in nature.
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Old 03-02-2018, 06:56 PM #4
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Default Re: looking for advice about my symptoms

Thank you so much for the replies. I would say the scariest is the twitches. They are driving me mad. I wake up in the night and I am twitching. The problem with the internet is you get so many different answers. I would say 70% say you won’t have twitches before weakness. And then you hold on to those answers to feel better and then you read something opposite 😔. The tiredness is draining. Just want to be like before when I had lots of energy. Had tons of blood tests and all is normal. So frustrating.
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Old 03-13-2018, 12:39 PM #5
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Default Re: looking for advice about my symptoms

Thought a quick update would do me some good and maybe some other opinions will follow. Quick recap of symptoms and dates.
July 2017.....legs feels off
Nov 2017.....twitching first noticed in left calf
Dec 2017.....body wide twitching (70% legs/30% elsewhere)

New symptoms
Very tired over the past couple of weeks, shoulders feel heavy and legs still wobbly. All muscles seem fatigued (ex: right arm straight down holding a 5Lb bag of potatoes and within 10 seconds my arm is shaking).
I have noticed that my jaw gets tired from chewing. The facial twitching is happening more often. Sometimes just by yawning or rubbing my face.
I have caught myself searching for words. Almost like I know what I want to say but something else comes out.
And lastly (I have no idea if this is related)....I fainted yesterday in my bathroom! Got out of the bath and felt my heart was racing a bit. Went to my room and back to the bathroom and it's a good thing my wife was in the bathroom. Everything went dark and I fell to the floor. I don't remember a thing but my wife says my left arm was shaking pretty badly along with my entire body. I was out for about 10 seconds and my day was scraped after that. She said it looked more like a seizure than fainting. Guess I will mention this to my doc next week (

Had a NCS and EMG yesterday. NCS of left arm and leg. EMG on right leg only. Results in a week. Seemed pretty quick to me. Hopefully all is good (will that help with this mess I am in)?

Basically still going crazy with lots of anxiety. What is it with this disease that we are so drawn to?

Any comment or suggestion still very much appreciated. Don't be shy to tell me I am a nut!
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Old 03-13-2018, 01:02 PM #6
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Default Re: looking for advice about my symptoms

Still no ALS...I'm not sure how you correlate your symptoms to a disease with a completely different onset.

Why are people drawn to this disease? I can bet you that no one actually diagnosed with ALS was drawn to this disease until a doctor had pointed it out to them. From my short time on the site, it has only been individuals consumed with health anxiety that are drawn to ALS. I have yet to see anyone come back with a formal ALS diagnosis with symptoms like twitching everywhere, "feeling" weak, stiff jaw, numbness, all muscle areas "feel" tired, or tingling.

I'm confident your EMG will be fine. Maybe then you can close the chapter to a horrific, debilitating disease that you are so drawn to.
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Old 03-13-2018, 05:38 PM #7
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Default Re: looking for advice about my symptoms

Thank you for your reply. The internet is too much to process. You just don’t know what to believe and it is such a vicious cycle. You just don’t know what to believe. That’s why I ended up here where people have actually lived through this awful disease. I guess I am just looking for answers and want to be healthy with lots of energy for my family. I guess it could be other diseases but unfortunately I have fallen into this awful trap. Hoping for answers soon and I can get on with my life like you said. I pray that one day they will find a cure for ***. My heart goes out to all of you who have to deal with this every day. I look forward to posting good news soon. Any other replies are welcome or suggestions.
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Old 03-13-2018, 06:59 PM #8
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Default Re: looking for advice about my symptoms

My only suggestion is to not believe things you read on the Internet. Trust your doctor and work with her/him.

Anxiety can make everything so much worse. Try to enjoy your loved ones.
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Old 03-15-2018, 07:58 AM #9
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Default Re: looking for advice about my symptoms

I have a hard time believing anxiety can cause all this. First thing I thought of with my facial twitches and jaw tightness was bulbar! This is absolutely nuts. Has anybody here with bulbar onset experienced anything close to my symptoms at onset?
-bodywide twitching
-minor cramps in calves
-facial twitching and tightness after chewing
-tongue looks scalloped on both sides
I feel like I am wasting all of your time but am very thankful for a place like this while waiting for results. Any other conditions that people could think of with these symptoms?
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Old 03-15-2018, 12:03 PM #10
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Default Re: looking for advice about my symptoms

You may have a hard time believing it, but it's true anyhow. People are not dismissing your symptoms. They are clearly affecting you quite profoundly. What people are saying here is that it doesn't follow the pattern of ALS. Your continued listing of your symptoms and your disbelieving the answers you are receiving from knowledgeable members here repeatedly indicate you are unable to let go of believing you have ALS. However, this forum is not for you no matter how much you believe it does. No one saying you DON'T have a health issue, just that it's not ALS. Therefore, an ALS forum does you no good.
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Old 03-15-2018, 02:07 PM #11
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Default Re: looking for advice about my symptoms

My husband died of bulbar onset ALS and did not have a single thing you are describing. You need to accept you have asked and been answered and we wish you all the best.
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Old 03-15-2018, 02:28 PM #12
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Default Re: looking for advice about my symptoms

I have been diagnosed with Progressive Bulbar Palsy. I have none of those symptoms. Never have had. Mine started with slurring words and has progressed to difficulty swallowing. I know the symptoms are not always th same, but doesn’t appear to mirror mine at all...
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Old 03-18-2018, 09:58 AM #13
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Default Re: looking for advice about my symptoms

You are all right and I truly am thankful for the responses. Results from the EMG are tomorrow and there are 2 reasons I hope to come back to this forum for.
1) to say all was normal
2) to make a donation so that you all can continue to help out others
Thank you all.
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Old 03-28-2018, 01:24 PM #14
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Default Re: looking for advice about my symptoms

Atsugi, any way I can get in touch with you? I don’t have PM priveledges.
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Old 03-28-2018, 01:35 PM #15
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Default Re: looking for advice about my symptoms

Are you able to post your emg results? Your last post indicated you had emg scheduled for the following day.
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