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sadiemae

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Read this again!

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor.
 

plznotals

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Hi and thank you very much for that explanation. It really helps me understand more about it. Can I ask this question? Are appetite issues ever present? Lately, I feel like I am hungry very frequently and my last blood tests were apparently normal according to my docs. Latest bloods were earlier this month. Now, one of the more strange things is the feeling that I may lose stool. This afternoon while driving, a car cut in front of me suddenly. When I reacted, it felt like I did lose a little. My gf was in the car and I didnt say anything...but clearly something is wrong with my nerves.

Also, can you please explain the 3 out of 4 theory? Thanks.
 

Alyoop

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If you experience a loss of bowel control in the absence of any sort of tummy upset, and it's not happened before, I would take myself to the doctor and discuss the issue.
 

plznotals

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Hi, yes...the truth is that I have mentioned this to my gp and the neurologists before and they seem to not be listening to me. I know that they think all of these symptoms may just be anxiety, but come on, something like that is not normal. Additionally, what is spasticity? Aside from the fasics, I notice my wrists and feet jerk lately. Is that spasticity? What is hyperflexia?
 

plznotals

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Hi all, if I have never mentioned this before, my left leg goes through this weak period at least 2-3 times per week. It feels like something is tickling it from the insides from the hip to the toes. I wish I could actually speak with someone on the telephone and I understand that many people are unable to. Would it be too much to ask a caregiver or family member to allow me to call them? Or they can call me. I would gladly provide my number. Please advise. Thank you.
 

panguinjen

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How far are you going to take this? If things are that serious, take yourself to an ER, print out your posts and give them to the doctor... You have been told time and time again that it's not ALS. My husband HAS ALS and lives each day fully, doing as much as he can to stay positive and forge ahead... He is not wallowing in supposition and maybes. He got himself to the doctor and asked questions of the people trained in diagnosing symptoms. Do you have something wrong? Maybe, but you're beating the people here to death with your "yes, buts"... Please, give it a rest...

I wish you answers that help from doctors that know,

Jen
 

plznotals

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Hi Jen, thank you for your response. I am so sorry to hear about your husband and I am also sorry if my concern about my condition, whatever it is, annoyed you a bit. The possibility of any mnd has just been very stressful. As I have said, I am praying for all those afflicted and the family members as well because I understand that it is a real challenge in all aspects of the lives of everyone affected. As I continue my search for answers I will seek the opinions of various people when necessary. I have actually been to the ER of a great hospital in the area when this all started. They couldnt do much except refer me to my gp. So, again, the search for answers continues as do my prayers for everyone on this forum and those like it. Please accept my apologies for being annoying and hug and kiss your husband for me.
 

notme

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HOw many ways can we tell you that these aren't ALS symptoms before you believe it? THe EMG was negative--it would show damage months and months before you 'felt' symptoms.

With two of you having symptoms--it sounds like something environmental. Not our area of knowledge. You had the EMG this MONTH. It would have shown something if it was ALS.

There comes a point where we are beating a dead horse--it's become that with this thread for me. GOod luck to you
 

panguinjen

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Your condition doesn't annoy me, your approach is annoying. People have given you their best advice, suggestions, etc and you counter with escalating issues to wanting some of us to call you so we can tell you in person what's been written. The logical process says that phone calls wouldn't be enough and you'd want a visit from one of us to tell you face to face.

Jen
 

Popeye

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Hi Jen, thank you for responding and I totally understand your point. It is amazing what fear and anxiety can do to people(me). I will do my best to try to remain calm during my search. Thank you.
 

sadiemae

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When we took my husband to the Emergency Room when we realized he probably had ALS, they admitted him IMMEDIATELY, and we were there for 7 days while tests were run. Also concerning your leg going weak for 2 or 3 days a week. Read this again.

Do NOT confuse "perceived" weakness with clinical weakness, nor confuse fatigued feelings with true muscle weakness. True physical muscle weakness and clinical weakness do NOT come and go. It is permanent and on-going to the point where you completely lose control and can no longer use that limb, (forever), and then it MIGRATES from there to other parts of the body. ALS is not random, and it certainly doesn't come and go like BFS does.
 

sadiemae

Very helpful member
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And, our expert in this is currently away from his computer. Consider yourself LUCKY that TrFogey is not able to respond to you at this time. He will be back soon, so I advise you to take our advice and stop posting!
 

Grateful

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plznotals/popeye

I am not sure why you believe that changing the name you post under is likely to change the responses given to you on this forum.

Looking back at your posts it appears that you have reached the point where none of your doctors believe that there is an underlying physical cause for your many and varied symptoms. Even the doctors in the ER you visited agreed with your own doctors.

If you had bothered to read the stickies you would have known that your many and varied symptoms bear no resemblance to those of people suffering from ALS/MND, and if you had bothered to read the responses to your posts you would also know that.

It is wildly inappropriate behaviour to ask that someone caring for a loved one who is suffering from ALS/MND should take you on as well, and that is what you are doing in asking that someone should talk to you on the phone. You are abusing the kindness of the good people here.
 

bryant41

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May 28, 2012
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I'm new to this forum. I'm 39, and went to my primary care MD the other day for joint stiffness that's increasingly getting worse, and complete atrophy of my right bicep. He performed multiple strength tests for which I failed all. He's also astonished at the amount of atrophy that's occurred calling it a "complete waste of the muscle." I have no numbness, I feel fine otherwise, and I'm active on and off the job. The atrophy has taken place over the last 6 months, and I procrastinated seeing an MD. At this point, I am unable to even curl a 2 lb. dumbell with the right arm. He has referred me t a rheumatologist and a neurologist for further testing in which he did mention ruling out ALS. Unfortunately, my appointment isn't for another week and a half with the neurologist. My wife is a very upset, and a mess right now thinking the worse. My good friend told me the atrophy may be from an impinged nerve in my neck which feeds the bicep. I really hope that's what it is, but like I said, I have a good range of motion in my neck, no pain, and no numbness. Any thoughts/opinions?

Thanks,
Tony
 

laurel

Very helpful member
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Jul 19, 2007
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Tony the nerve impingement is a possibility. My husband has CIDP with major atrophy of the right forearm and right hand and footdrop. There are many diseases out there so it is best to let the neurologist figure it out. Best of luck with your appointments.
Laurel
 
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