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happy

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I am still experiencing twitching in my arm and randomly chest, back and occasionally one or two twitches in arm on opposite side. The increase in facisis is new to me it has been happening now for about 3 weeks. I have also noticed that my jaw is really tight. This clenched chin has been going on for about 8 months but it is just getting more intense. The last week I have had a really sore throat and noticed that my jaw and mouth area felt really stiff. painful to swallow. No slurred speach. My emg came out normal dont you think that since my atrophy in hand and up arm started 6/07 that it would have shown something if it was not benign? I am wondering also if maybe a botox injection in my chin would help keep it from tensing up? Any response would be appreciated.

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hopingforcure

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Spasicity, sounds like that is what it is, that can also be a UMN problem that is giving you grief. I am having the same jaw symptoms, they are pretty troublesome. I have also been to the ent, who feels like it could be tmj and osteoarthrtis, maybe we can see if anyone else is having similar issues.
 

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thanks for the reply, hoping.

Could the twitching be als related if it is occuring all over my body? Also, UMN is this upper motor neuron? Also, since I did hav an emg and the dr said I dont have als based on the results could it have been too soon to tell? Do emgs usually detect problems in the first year?
Sorry so many questions but I am starting to get really scared again. I need answers I can not understand my body and what is taking place. Aside from all you very wonderful people I wished I'd never found this site.
 

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I am scheduled for a LP today I had alot of twitching last night it mainly on my left side same side as hand atrophy and am feeling jittery on the inside. Is this als related? I want to be able to give some info to my neurologist. Could someone please help me with an answer. my biggest question is could my emg have been normal after 1 year of atrophy in my hand and I still have als? Also the increased muscle twitching? Jitters on the inside? I am a mess. My whole family is petrified. My husband has admited that he has been cruel to me because he thought I was making this all up until he sees my symptoms getting worse. I am supposed to go back to work next week...I dont know how. Please anyone, wwright, paul, hoping, your expertise answers I need you.
 

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Happy,
I know exactly how you feel. Yep, the stiffness spasticness is upper motor neuron related, ant the twitching, even it is benign(non Als related), can cause pain and stiffness. I do think your emg would have shown some things that pointed towards als. The test looks for certain characteristics that point towards als, if that is what they are concerned with. When the neuro said he did not think ALS, then that is a really good sign pointing away from als. I have learned a while ago that if your emg was clean at that time, well that is worth celebrating. I do think that your emg would have shown something, sounds like something else is going on to me.
We are here, we understand completely how you feel. Take a lead from are dear moderator Cindy on this one, she has chose to take everyday as it comes, and not worry minute to minute, and you know what, however long that she gets to live in the non-diagnosed. world is a gift, and I have learned that from her. She is a good role model, for living with an uncertain future, but not letting it take over her life.
Relax my friend.. We are here...
 

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hoping...thank you! I am trying so hard it is like a roller coaster one day I am okay and then I get a new symptom and it starts all over again. Thank you so much for your kind advice i will take it and do my very best. this is a huge inner battle. I cannot allow my self to be taken away by fear.
 

hopingforcure

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Oh goodness, I get that completely. I have what my husband calls breakdown days, I mean I cry for no reason, I tell my husband that it is part of the disease, which it is, but I think I would still have a few of these days without. I get it, take it moment by moment, and so will I..Hoping
 

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God bless your heart, hoping....I'm off for my Lumbar puncture.
 

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Make sure you lay flat afterwards, and drink a big coke. Only on this forum would be going for a LP, possibly good news, and a normal daily outing...Hpoing
 

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Hey Happy

Sorry it took me so long to respond. I really think you're jumping the gun with ALS. I went back and re-read your earlier posts and your symptoms sound like classic Parsonage-Turner syndrome (also known as brachial neuritis . . . neuralgic amyotrophy). There is actually someone else on here that has similar symptoms to yours . . . but your symptoms are even more classic for that syndrome. Please ask your physician about it and see what he/she thinks. It is a rare . . . often missed syndrome (it is not well known and not often seen, especially with local neuros). It is not life-threatening at all. All you have to do is wait to heal.
You simply had too many sensory symptoms when this all started . . . and the pain you had sounded like neuropathic pain, which is definitely not a symptom of ALS (pain can certainly be a symptom, but pain from muscle cramps, spacitity, joint stiffness . . . but not neuropathic pain).
I really think that many of your other symptoms are from stress . . . or could very well be from the virus . . . autoimmune response that causes Parsonage-Turner syndrome (at least those are the leading theories as to what causes it . . . they know very little about it).
Let us know how you're doing and if you need more help.
Take care
 

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Thank you, Wright, I am praying that you are correct. I looked up the symptoms for Parsonage-Turner Syndrom. I do have a lot of the same symptoms except I had pain in the trapezus muscle (severe) it radiated all the way down my left arm into forearm. Deep throbbing pain in arm and stabbing nerve pain in trap. Deltoid and bicep have been pretty much uneffected. After initial pain went away 7 days June 07 I have had atrophy ever since in hand and tricep. Thank you for responding I really am grateful..

Hoping, Are you having a good day? I missed my appt. yesterday I showed up at the wrong location. They rescheduled me for Fri. (darn) I was really hoping to get that overwith.
I am off to take kids to school...talk to you later

Robin
 

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You can have pain in any area of the shoulder girdle . . . down to your fingers. The internet doesn't always give the full picture. Again, you are almost a classic example of the syndrome. If I were a betting man, all of my money would be on that diagnosis.
 

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oh, thank you...
 

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oh, thank you...I will tell my neuro when I see him on Friday. thanks again wright.
 
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