ALS/MND Support Group Forums

Tamoxifen

hkmke — Thu, 17 May 2012 06:58:54 GMT

Has any one heard of Tamoxifen which works to rescue the motor dysfunction of the TDP-43 mice? Apperently Rapamycin could also work, but Tamoxifen has less side effect.

Thanks

Advice from cals please!

ruthiep — Thu, 17 May 2012 03:10:44 GMT

I'm not sure what the crud to do...Scott decided Sunday that he "really" didn't' need either of his AFOs! He's decided that he doesn't want me to stretch or massage his legs and refuses to wear his hand braces at night....what the crap???? He absolutely needs his braces to walk and I'm petrified that he's gonna trip and "face plant" at some point. Advice please.....

Hugs and luv to all!

Ruth

Scared

WittyreaderLI — Thu, 17 May 2012 01:26:26 GMT

Hey all,

I've been experiencing some minor symptoms and was just going to ask for your thoughts. I've been feeling a strange feeling in my left hand. I often have pain in the fingers, and they feel "Tense". I havent' had any twitching. But the fingers do feel tight. I dont' have any problems lifting, but often when I am walking, they feel awkward unless they are in a fist.

Hope this doesnt' sound too crazy.

Having a hard time with a leg

Willow — Wed, 16 May 2012 21:00:21 GMT

Hi everyone,
I am having a hard time with limbs in general but one leg in particular is proving to be more difficult. If I stand or walk for a time it is an issue but if I sit on a chair of any sort, even just to try and drive the car a short distance somewhere it still proves to be a problem. Even at rest at night the limbs act up.
When I walk, I have put my hand on the back of my thigh and can feel (what I think is a tendon?) the snapping motion. I have little muscle left in the leg & the back of the thigh and the buttock area. I have lost about 10 - 12 lbs in recent months, which is a bit concerning as I now weigh about 125 lbs at 5' 9".
I can't really carry around a cushion to work etc. but would appreciate some insight as to what I can try and do to alleviate some of this discomfort etc. I am still trying to continue on with things as best as possible. My left side, while a bit compromised, doesn't seem to be as bad.
Thanks in advance for any advice anyone has.

ALS Walk article about me

Al — Wed, 16 May 2012 19:27:00 GMT

I'm only 62 not 68.

Orangeville Article: Against all odds

AL

Scared I have BFS

glupavomomiche — Wed, 16 May 2012 16:17:17 GMT

I'm, like, a 33 year old female, and I'm not in good health. I have a lot of weakness all over, I have foot drop, I can't walk anymore without a brace and a cane or walker, and I have trouble swallowing and eating. I went to LOTS of neuros, and they were like, OMG, you have ALS, you're gonna die in a few years. And I was like, no freakin' way, I don't believe you. I know how to use the inter web and I have a BS in geology where I learned how to use a search engine, so I looked it up, and KNOW I don't have it.

The things is, I have these twitches, like, all over me. They drive me insane! They bother me all day while I'm, like, brushing my hair and putting on makeup and stuff. They drive me crazy when I'm trying to eat and my tongue is twitching and doesn't move the food around in my mouth anymore. And they really make me bonkers when I'm lying in bed at night and just twitching away. I, like, can't even sleep anymore!

I'm REALLY REALLY scared that I might have benign fasciculation syndrome (BFS). I used my BS degree and looked it up on the inter web and it really sounds like what I have, especially now that I have anxiety 'cause I think, no I KNOW, I have it.

I would REALLY appreciate y'alls opinions. Especially those of you who have symptoms like mine. I'm sure y'all know WAY MORE than those stupid neurologists who told me I have ALS. SO PLEASE tell me you think it's BFS, ok? Thanks, y'all are, like, AWESOME! :D

ALS Raising Hope Walk

dldred — Wed, 16 May 2012 15:34:18 GMT

Doing this walk in memory of my mom, we have met our goal and are ready to exceed it!! So glad to have something in the upstate NY area finally to raise money and awareness.

The Walk of HOPE, Walk of 1,000 Umbrellas & Spring Festival
Saturday - May 26, 2012 Trinity Park - Plattsburgh, NY

It's About:
�Raising awareness of ALS, Alzheimer's, Parkinson's, Huntington's and all neurodegenerative diesases
�Joining in solidarity with other local support groups to spread awareness
�Raising $100,000 to fund research for a CURE at MassGeneral Institute for Neurodegenerative Disease (MIND)
�A community-wide event, involving walkers, sponsors, volunteers, and local businesses, building community-giving and encouraging teamwork
�Celebrating the courage and determination of the patients and families who face these horrific disorders.
�ALL OF US!

i ran over my husband with my pwc

jb63 — Wed, 16 May 2012 14:20:10 GMT

:shock:well, it was a group effort. he forgot to lock the controls. somehow it was set on max speed. the controls were on the arm that we lifted to make my transfer. john was lifting my legs and my son lifted my shoulders and hit the joystick. the chair did a wheelie across the room pinned him under the motor and agaist the wall. i was still in the chair. it took 2 people lift the chair. john is now in a cast.:shock::shock:

janet

Bi-Pap and Oxygen?? Altitude change?

MLOx — Wed, 16 May 2012 06:34:22 GMT

Hi all, my mom has ALS bulbar onset. She moved to Colorado Springs a few weeks ago, has been on bi-pap for several months. The ALS clinic is in Denver --so we went to a local Pulmonary doc in town --he had her take a blood gas test and oxygen test. Her co2 is slightly elevated and oxygen in in the mid 80's he recommended oxygen. My mom had been told by the ALS clinic in Phoenix that they wouldn't recommend oxygen. This Colorado doc said yes, in phoenix but in Colorado not the case.....any thoughts?? How many folks do oxygen? Just at night or just with the bi-pap? Only if she continues to go in and get her blood gas monitored? what if it goes up (I'm guessing the disease process it will)?

Also, any neuro in Colorado springs you can recommend?

Thanks in advance, Monica

Almost certain I have ALS. Please help.

lionthunder — Wed, 16 May 2012 04:51:11 GMT

Hello. I am 22 years old and I am nearly certain I have ALS. I know the statistics, but that alone is apparently not enough to put me at ease. If it were, I wouldn't have come here. I am hoping someone on here will talk some sense into me. Here goes:

Three weeks ago while I was arranging books I noticed a strange sensation of weakness in my forearms. I examined my hands closely, and tried gripping tightly, which I could barely do. I was concerned for a little while, but I dismissed it as stress due to upcoming exams. And it went away.

Then a week later I noticed the same sensation again (trembling arms, weak grip). I thought the same as before, but this time it didn't go away. As the weekend came on and I had to go to work, I became more anxious after reading the symptoms of ALS online. I started sensing similar sensations in my legs: A sort of trembling infirmity whenever I knelt down, like they were about to give or something, and I had more of the same in my arms. Then as the night went on the sensations seemed to diminish, so once again I dismissed it.

Then the next day the symptoms returned, only this time they didn't go away. I had a feeling like I was losing my grip on things more easily, and my legs began feeling even weaker. I was so shaken that I had to call off work early. At that point I had convinced myself that I had ALS. For the next several days until my doctor's visit, I experienced odd fluctuations in strength perception: some days I would wake up feeling weak, and then I would improve as the day went on. Other days (usually the following) would be the opposite, I'd wake up feeling fine and then would gradually feel the weakness coming on again. It would always be the same places: arms and upper legs. At one point I went to the gym and did one set of moderate weight on each major muscle. I had little to no difficulty and felt better afterward, only to feel weak again later. Twitching in various areas also became worse. I began to feel twitching all over my body, mostly in my limbs. The night before the appointment my feet and lower legs were twitching so much they were practically having seizures. From then I noticed my shins and calves having weakness too.

Saw the doctor, who of course told me that ALS was highly unlikely and suspected either a psychological cause or a deficiency and ordered blood-work.
My symptoms would continue to fluctuate, until finally one day I felt like I had reached a plateau where I had gone nearly an entire day without any major symptoms. Then the next morning I woke up and everything felt worse. My calves were sore, my quads were sore, and so were my arms and forearms.

Now I feel as though the weakness has changed: where once it was a mere trembling sensation, now it is more like a true fatigue. I tried exercising again, and was able to pull the same weight, but afterward felt even more sore, far more so than what I'd usually experience after working out.

At this point it is three weeks since this all began. I'm still waiting anxiously for the results of the bloodwork and praying that there's an abnormailty found so it can end there. I can still walk normally, run, go up steps, and ride my bicycle without difficulty, but I feel as though I am tiring faster. It is hard to tell since I was a little out of shape to begin with. My fingers and hands still seem fully motional and able to perform dextrous tasks like tying shoes, opening bottles, turning keys, buttoning, and solving a puzzle cube, but I am getting a paranoid sensation that my fingers seem stiffer than they used to be. Tasks that require very delicate motions like handling papers or unwrapping candies seem to require a bit more attention and slower motion (can't tell for sure though). Even as I am typing this one-handed, which I can usually do easily, I feel like I'm missing keys more frequently. I can feel the extensor muscles in my forearms tiring after using my fingers for just a little bit. Twitching actually seems to have diminished from earlier but it still continues, whenever my muscles are at rest, usually in my legs. I have suffered no loss of control, for the most part, just this increasing fatigue in all of my limbs.

I've tried long and hard to find some deficiency, some other condition that these symptoms could be attibuted to, but none seem to fit the bill. ALS seems to be the only one that fits, and needless to say I am very frightened. So does this sound like it, or is this simply the worst case of hypochondria you've ever heard?

In home care

deiter3433 — Wed, 16 May 2012 01:59:23 GMT

Hello,

My father has had ALS for almost 2 years and to this point members of the family have been able to care for him. However, due to professional work requirements of family members and progression of ALS we are in need of help in the home.

Can anyone share good resources we can go to that would be able to help out with his care in the home?

Thank you for your time.

Pls w/leg pain, Myoclonic Jerking, RA, or bladder spasticity?

Whitetiger — Wed, 16 May 2012 01:30:27 GMT

Hey All,

Haven't been here in a while. Curious as any Pls patients if you have any of these symptoms mentioned in the thread title? Leg pain caused by severe cramps, especially at night? Myoclonic jerking all night long? RA? Bladder spasticity?

ALS Awareness - Meet Kevin Swan

cervus — Wed, 16 May 2012 00:33:05 GMT

YouTube (Short URL)

A glimpse into the world of ALS - The ALS Association

After Diagnosis, Cellucci Aiming To Help Raise Millions For ALS Research

HelenL — Wed, 16 May 2012 00:10:27 GMT

Story on WBZ tv Boston about former Massachusetts Gov. Paul Cellucci... I go to my clinic at UMass Medical, and met Dr. Brown there last week at an MDA/ALS Evening of Hope Gala. Dr. Brown spoke of the research being done there...

After Diagnosis, Paul Cellucci Aiming To Help Raise Millions For ALS Research � CBS Boston

Just wondering.....

scotslassie — Tue, 15 May 2012 23:13:03 GMT

Hello everyone. I joined this forum a few months ago as my aunt had als (bulbar onset) and I found it to be a great source of reliable information. I'm now on to ask for your opinion on something. My aunt was diagnosed at the age of 68 in May last year, sadly she passed away in February of this year. She had a sister who passed away 15 years ago from bowel cancer. This sister had been diagnosed with Myotonic Dystrophy almost 10 years before her death, she also had learning difficulties. We (the family) were talking about this sister and started wondering if in fact she had MND. She had foot drop and walked with an aid until she had to use a wheelchair, her upper body was very weak - no strength in her arms, she had very little energy and wanted to sleep most of the time. She was still able to write and draw but we saw she was gradually becoming weaker. She was diagnosed with bowel cancer and sadly died just a few months later. There was also a brother, my uncle, who suffered from mild muscle weakness and learning difficulties but unfortunately died in an accident when he was 40 before he could be diagnosed. Now my mum (88) has informed us that she had an aunt who was unable to walk or talk and who died quite young but no-one knew what was wrong with her. It's maybe just co-incidence that Myotonic Dystrophy is in our family, yet my aunt was diagnosed with MND. I am wondering if they are linked somehow or even if there was a mis-diagnosis 25 years ago. None of the family have gone down the route of genetic testing. What do you think? I dont want to G o O g lE anything - I know where that leads! Thank you.