http://www.alsforums.com/forum/ ALSforums is a support group community that provides answers, tips, friendship, care and support to people affected by ALS, MND and PLS. en Fri, 24 May 2013 23:22:59 GMT vBulletin 60 http://www.alsforums.com/forum/images/misc/rss.jpg http://www.alsforums.com/forum/ http://www.alsforums.com/forum/general-discussion-about-pls/22179-new-forum-looking-aid-getting-up-after-fall.html Fri, 24 May 2013 15:25:17 GMT Last night my husband fell and for the first time we were not able to get him back up. Had to call 911. While the guys who came were fabulous, we'd rather find a service that we can call to come and help. Or is that not available? I've spent several hours searching for this type of service, but everything I find seems to just call 911 for you? ]]> General Discussion About PLS BridgetStahl http://www.alsforums.com/forum/general-discussion-about-pls/22179-new-forum-looking-aid-getting-up-after-fall.html http://www.alsforums.com/forum/do-i-have-als-als/22178-als.html Fri, 24 May 2013 01:06:45 GMT Hello , first I want to say thank you to anyone who reads this post and I am so very sorry for those of you that have been diagnosed. I have been... Hello , first I want to say thank you to anyone who reads this post and I am so very sorry for those of you that have been diagnosed. I have been having symptoms since january that keep evolving.
In January- I started having tingling in my feet then my hand and shooting pains through out body plus chronic right knee pain. I had an mri and emg and they were normal.
Now- since then more symptoms have developed the body pain has gotten worse plus I get an electric shock in one foot when stretched. Now both knees are in pain I am having foot and hand cramping . I also have muscle spasms sometimes you can see them sometimes just feel them. I get the spasms mostly upper arm and upper thigh but sometimes other places as well. I have also noticed my balance is off, and I will get sharp shooting pains in feet and hands , ears sometimes all different places. Any help would
Be appreciated I have myself very concerned. I do have an appt with an ALS specialist in 3 weeks but I'm worried sick. Thanks for listening . ]]> Do I Have ALS? Is This ALS? Itsimplymelc http://www.alsforums.com/forum/do-i-have-als-als/22178-als.html http://www.alsforums.com/forum/other/22175-what-my-parents-taught-me.html Thu, 23 May 2013 19:44:59 GMT 12 things my parents taught me...........



1. My parents taught me about WEATHER.
"Your room looks like a tornado hit it."

2. My parents taught me about RELIGION.
"You better pray that comes out of the carpet."

3. My parents taught me about TIME TRAVEL.
"If you don't straighten up I'm going to knock you into the middle of next week."

4. My parents taught me about OSMOSIS.
"Shut your mouth and eat your supper."

5. My parents taught me about the CIRCLE OF LIFE.
"I brought you into this world, I can take you out."

6. My parents taught me about ENVY.
"There are millions of less fortunate children in the world who don't have wonderful parents like you."

7. My parents taught me about RECEIVING.
"You are going to get it when we get home."

8. My parents taught me about GENEOLOGY.
"Shut that door... You think you were raised in a barn?"

9. My parents taught me about JUSTICE.
"One day you'll have kids... I hope they turn out just like you!"

10. My parents taught me about LOGIC.
"Because I said so, That's why."

11. My parents taught me about STAMINA.
"You'll sit there until your spinach is gone."

12. My parents taught me about IRONY.
"Keep crying. I'll give you something to cry about." ]]> Other olly http://www.alsforums.com/forum/other/22175-what-my-parents-taught-me.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/22174-what-can-i-expect.html Thu, 23 May 2013 19:26:06 GMT I began having a slight balance problem in Sept., 2001. In March, 2012' my foot dropped. It took until January, 2013 to get a motor neuron diagnosis. I use a walker and my left foot is now almost as week as my right. The doctor originally told me it looked like a slow progression but now my hands are slightly losing strength and my left pinky is twitching. Any way to judge how long I have until it spreads to my actual walking? Swallowing? ]]> General Discussion About ALS/MND Epsteinroberta http://www.alsforums.com/forum/general-discussion-about-als-mnd/22174-what-can-i-expect.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/22173-wondering-if-i-have-als.html Thu, 23 May 2013 18:38:00 GMT I ama 48 yr old female. In December started with shoulder blade pain. Went to chiropractor thru feb. at same time leg felt weird. Rubbery. I wasn't getting relief so I went to dr and checked my reflexes etc. shoulder blade pain subsided in April but still have arm and leg feeling not right. I have to rub them all the time. So went back to dr and he did an MRI. Found a faint 1.2 by 2 cm lesion on front parietal lobe of brain. Radiologist suggestion was demyelination disease or vascular low suspicion for tumor. Followed up this past Friday with neruo. Clinically found that I do have weakness in left arm and leg. I had asked about als. He asked if I was having swallowing or speech issues. I didn't on Friday. Two days ago i feel like slump is in my throat and can feel phlegm in throat seems weird to swallow. Would symptoms present this way. I also have twitching in various spots. I will be testing in 5 days. Emg and MRI of thoracic and spine. In 5 weeks a spinal tap will be done. Any thoughts. I did find an article that post mortum als found lesions in this part of brain. Also would I have left arm and legnweakness at same time as swallowing. This has been a period of 5 months. Thanks for any thoughts. ]]> General Discussion About ALS/MND jojo1964 http://www.alsforums.com/forum/general-discussion-about-als-mnd/22173-wondering-if-i-have-als.html http://www.alsforums.com/forum/do-i-have-als-als/22172-undiagnosed-update.html Thu, 23 May 2013 15:37:03 GMT Hello Everyone, I have posted here over a year ago and since then I noticed that there were a few undiagnosed people that joined the forum that are... Hello Everyone, I have posted here over a year ago and since then I noticed that there were a few undiagnosed people that joined the forum that are having similar symptoms to mine. I would like to re-share my story in case someone has any suggestions… I don’t mean to offend anyone on this forum, I have a lot of respect for your advice and courage. Thank you.

My symptoms started over 4 years ago at the age of 31 yrs old, I am 35 today. I noticed a lack of energy and unusual fatigue when playing sports. I attributed this to aging. Over the next few months I noticed that every morning I would wake up with sore legs, as if I had walked or ran the day before…despite not having done so. This condition progressed and the stiffness became greater and greater and developed into exercise intolerance. I can play sports but I am very drained after and my feet and hands get stiff and shake a lot for a good couple of hours. About 2 yrs ago I noticed fasciculations and random twitches. The twitches happen quite a lot and occur in many different muscle groups (thighs, quads, arms, neck, back, abs, eye, lip, etc…). The fasciculations are wavelike and mainly in my quads and thighs when I flex them. For example, a squat position will always cause them to shake and ripple under the skin. All these symptoms have been progressing very slowly (4 yrs +) but nothing seems to help. Symptoms have started pretty symmetrically in the upper legs but today I definitely feel more tightness/stiffness in the right lower leg (calf area). Most recently, I am getting a feeling of weakness in the left arm/shoulder area and my fingers shake uncontrollably after playing 5-10 minutes on the guitar.

I have been very anxious about ALS and got help (medication) for the anxiety / depression. This made me feel better psychologically. I have had a lot of bloodwork, I was seen by 4 neurologists, I had a number of MRIs and 3 EMGs. Everything came back mostly normal and doesn’t point to a specific condition. 1st EMG was clean, 2nd EMG showed some re-innervation and fasciculations but no chronic denervation and the last one was normal (done about 8 months ago). One neuro thought that I might have some weakness in my arms but the three others said my strength was symmetrical and fine. I do shake tremendously when flexing my muscles, pushing or lifting a heavy weight (say 30lbs or more).

I try hard not to think about ALS given the EMG results but I read stories of people being diagnosed after 5 or 6 years and numerous EMGs. I have tried all sorts of remedies ranging from exercise to supplements and nothing seems to improve my condition. I have a follow up with my neurologist at the end of July, hopefully something will get sorted out then. I am feeling that this undiagnosed condition is starting to affect my ability to work… Anyhow, I just wanted to vent a bit and share my story with the undiagnosed crowd, helps to get things off my chest. ]]> Do I Have ALS? Is This ALS? Matt21 http://www.alsforums.com/forum/do-i-have-als-als/22172-undiagnosed-update.html http://www.alsforums.com/forum/do-i-have-als-als/22171-nerve-tests.html Thu, 23 May 2013 09:05:01 GMT Hello again,
I had previously booked an neurologist appointment which was cancelled by the neurologist, and I now can't get a spot for 5 months apparently they're really busy.
I have gone back and seen my Dr who has now mentioned wanting to rule out Als as atrophy has been added to the list and the fact that I'm using my non-dominate hand for quite alot now. But he doesn't do the nerve tests, does anyone know of any drs that do the nerve tests besides neurologists? ]]> Do I Have ALS? Is This ALS? Unsettled5 http://www.alsforums.com/forum/do-i-have-als-als/22171-nerve-tests.html http://www.alsforums.com/forum/do-i-have-als-als/22170-emg-qestion.html Thu, 23 May 2013 06:29:41 GMT Can I trust an EMG performef according to standard needle placement, in spite of the fact that no needles were placed in the area were I am... Can I trust an EMG performef according to standard needle placement, in spite of the fact that no needles were placed in the area were I am clinically weak (gluteus medius) and percieved weak (abductor hallucis)?
Is it enough to stick in side of tounge to assess for bulbar involvment?
Needle placement were thighs, calves, hands, fascial muscle and side of tounge. Qualified doctor performed the test and said no signs of ALS.
Thanks! ]]> Do I Have ALS? Is This ALS? Wonderer http://www.alsforums.com/forum/do-i-have-als-als/22170-emg-qestion.html http://www.alsforums.com/forum/do-i-have-als-als/22169-exercise-muscle-twitching-not-mnd.html Wed, 22 May 2013 20:42:01 GMT Am I correct in thinking that muscle twitching getting much worse after exercise is NOT consistent with MND? I can see this listed clearly as a BFS... Am I correct in thinking that muscle twitching getting much worse after exercise is NOT consistent with MND?
I can see this listed clearly as a BFS symptom, but not MND.
Thanks in advance x ]]> Do I Have ALS? Is This ALS? grgizi121 http://www.alsforums.com/forum/do-i-have-als-als/22169-exercise-muscle-twitching-not-mnd.html http://www.alsforums.com/forum/do-i-have-als-als/22168-upper-motor-neuron-plus.html Wed, 22 May 2013 03:17:18 GMT I have several of the signs of upper motor neuron involvement. Babinskis, clonus, hyper reflexivity. I have fasciculations in feet, calves arms... I have several of the signs of upper motor neuron involvement. Babinskis, clonus, hyper reflexivity. I have fasciculations in feet, calves arms chest. Feel and see them almost always somewhere. Right shoulder has very limited motion and is always very painful. See tone in right hand especially. Always aching in this area . Knees hips very stiff. Fast movement is very painful. Cannot make fist with right hand. Emg said continuous motor unit activity. Took ivig treatments for several months to rule out stiff persons.....no effect seen from treatments. Neuro now sending me to movement disorder clinic for second opinion. Can't see the point of this as nothing seems to fit there either. Anybody experience anything like this? ]]> Do I Have ALS? Is This ALS? Port http://www.alsforums.com/forum/do-i-have-als-als/22168-upper-motor-neuron-plus.html http://www.alsforums.com/forum/do-i-have-als-als/22166-not-sure-what-s-going.html Tue, 21 May 2013 21:06:30 GMT For the last 4 months I been experiencing twitching and jerks all over my body even places i never had them in my life like my stomach. I would... For the last 4 months I been experiencing twitching and jerks all over my body even places i never had them in my life like my stomach. I would twitch around 5 times a min. in random spots.

Also I workout alot and and Im starting to see a change . Im experiencing a lot more pulled and sore muscles after runnung and lifting weights and I also have to stretch . It would also take longer for me to recover from this. Im also going down in the amount i can lift

One last thing is I feel like my muscle are more soft and spongy in my arms and upper legs and I fell like my stomach is sticking out alot more . I felt like the stomach thing happen over night .

Dose this sound like ALS? If not any idea what it is ? ]]> Do I Have ALS? Is This ALS? Southern22 http://www.alsforums.com/forum/do-i-have-als-als/22166-not-sure-what-s-going.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/22165-ask-us-about-propofol.html Tue, 21 May 2013 19:03:09 GMT Re posting:

"Specific Improvements For Me: Improvement in right sided swallowing. Can eat and drink currently without coughing every single time I do either (which was the case before my biopsy). Also, a feeling of more right sided strength which is more subtle than my swallowing improvement. Specifically in my shoulder/arm/hand.

Duration: Coming up on a month with no changes either way. PFT came back normal (barely shall I say though).

Jason"



"Originally posted by Cyprus in another thread I am just adding it here since it is relevant here. If it has already been posted,let me know and I can delete this. I boldfaced some key words. TIA OG

CNS Neurosci Ther. 2008 Summer;14(2):95-106. doi: 10.1111/j.1527-3458.2008.00043.x.
The experimental and clinical pharmacology of propofol, an anesthetic agent with neuroprotective properties.
Kotani Y, Shimazawa M, Yoshimura S, Iwama T, Hara H.
Source
Department of Biofunctional Evaluation, Molecular Pharmacology, Gifu Pharmaceutical University, Gifu 502-8585, Japan.
Abstract
Propofol (2,6-diisopropylphenol) is a versatile, short-acting, intravenous (i.v.) sedative-hypnotic agent initially marketed as an anesthetic, and now also widely used for the sedation of patients in the intensive care unit (ICU). At the room temperature propofol is an oil and is insoluble in water. It has a remarkable safety profile. Its most common side effects are dose-dependent hypotension and cardiorespiratory depression. Propofol is a global central nervous system (CNS) depressant. It activates gamma-aminobutyric acid (GABA A) receptors directly, inhibits the N-methyl-d-aspartate (NMDA) receptor and modulates calcium influx through slow calcium-ion channels. Furthermore, at doses that do not produce sedation, propofol has an anxiolytic effect. It has also immunomodulatory activity, and may, therefore, diminish the systemic inflammatory response believed to be responsible for organ dysfunction. Propofol has been reported to have neuroprotective effects. It reduces cerebral blood flow and intracranial pressure (ICP), is a potent antioxidant, and has anti-inflammatory properties. Laboratory investigations revealed that it might also protect brain from ischemic injury. Propofol formulations contain either disodium edetate (EDTA) or sodium metabisulfite, which have antibacterial and antifungal properties. EDTA is also a chelator of divalent ions such as calcium, magnesium, and zinc. Recently, EDTA has been reported to exert a neuroprotective effect itself by chelating surplus intracerebral zinc in an ischemia model. This article reviews the neuroprotective effects of propofol and its mechanism of action." ]]> General Discussion About ALS/MND EJTUNow http://www.alsforums.com/forum/general-discussion-about-als-mnd/22165-ask-us-about-propofol.html http://www.alsforums.com/forum/als-research-news/22164-genervon-s-multiple-target-als-drug.html Tue, 21 May 2013 18:03:13 GMT Multiple Target ALS Drug Ready for Genervon's Phase 2 Trial - Yahoo! Finance

Comments? ]]> ALS Research News mbmurray http://www.alsforums.com/forum/als-research-news/22164-genervon-s-multiple-target-als-drug.html http://www.alsforums.com/forum/do-i-have-als-als/22163-neurologist-v-s-neurophysiologist.html Tue, 21 May 2013 17:51:53 GMT Can anyone tell the difference between these please? Can anyone tell the difference between these please? ]]> Do I Have ALS? Is This ALS? grgizi121 http://www.alsforums.com/forum/do-i-have-als-als/22163-neurologist-v-s-neurophysiologist.html http://www.alsforums.com/forum/do-i-have-als-als/22162-numb-base-thumb.html Tue, 21 May 2013 07:26:59 GMT My maternal uncle died of ALS-MND some years ago. I am 22 years old and have been told that it is possible I may be genetically susceptible to the... My maternal uncle died of ALS-MND some years ago. I am 22 years old and have been told that it is possible I may be genetically susceptible to the disease. Since Sunday I've been experiencing a numbness in the base of my thumb, to the best of my knowledge (after consulting an palm anatomy map on google images) the opponens pollicis, and part of the abductor pollicis brevis muscles.

I read on Motor Neurone Disease | Health | Patient.co.uk that "You may also notice that the muscles in your hands (especially at the base of your thumbs) become flatter with time." listed as an early symptom.

I am also an alcoholic (binge drinker, not daily), and on Saturday I had an extremely large quantity of alcohol. Could this be alcoholic neuropathy? I doubt if it is diabetes related as a scrape on my arm that I got on Saturday has healed already. I've had cramps and tingling after drinking previously but they resolved after a good swim and workout, this has not. I have just taken a thiamine shot and have been drinking vegetable & fruit juice.

How long should I wait before consulting a doctor and getting an EMG, TMS etc done? I'm really worried and can make a small donation for a specific reply. ]]> Do I Have ALS? Is This ALS? indianguy http://www.alsforums.com/forum/do-i-have-als-als/22162-numb-base-thumb.html