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DreaGrl 04-01-2012 08:02 AM

Questions about Bulbar onset
 
How fast can it progress? I've posted on here before with my symptoms. For five days now, I've had difficulty swallowing. It seems to get worse day by day. After that, I began to have twitches all over my body. Everywhere. Face, tongue, back, all in my legs, anywhere you can think of. Sometimes, all the same time. It only happens when I'm laying down. I have noticed a bit of muslce weakness, but nothing major. However, I have noticed my limbs on my left side feel weak. When I eat now, I can feel my food a lot; it feels sharp. It also feels like someone is pinching my throat glands. Is it possible for ALS symptoms to progress this quickly from throat to body, or even all at once, within a two months or within a few weeks?

TreeB 05-07-2012 08:15 AM

Re: Questions about Bulbar onset
 
My mother was diagnosed with Bulbar onset March 2012. At that point she was in late stage. As we look back on it now we think she started the initial symptoms about 2 years ago. In March 2011 she began having problems clearing her throat and was using cough drops constantly. In June 2011 she was hospitalized for problems with her legs but was still able to talk clearly. By fall of 2011 we noticed a great change in her voice and went to an ENT who found nothing and that was a waste of an appointment. I then got her into a neurologist because I thought she suffered a stroke and then that is how we came to the diagnosis of ALS. I guess each person can progress at various rates. My mother never had major twitching and never complained of feeling a pinching in her throat. Her main issue has been muscle weakness but she is pretty much on a liquid diet at this point due to swallowing issues.

[QUOTE=DreaGrl;4954128]How fast can it progress? I've posted on here before with my symptoms. For five days now, I've had difficulty swallowing. It seems to get worse day by day. After that, I began to have twitches all over my body. Everywhere. Face, tongue, back, all in my legs, anywhere you can think of. Sometimes, all the same time. It only happens when I'm laying down. I have noticed a bit of muslce weakness, but nothing major. However, I have noticed my limbs on my left side feel weak. When I eat now, I can feel my food a lot; it feels sharp. It also feels like someone is pinching my throat glands. Is it possible for ALS symptoms to progress this quickly from throat to body, or even all at once, within a two months or within a few weeks?[/QUOTE]

sac2hpt 08-13-2012 03:08 PM

Re: Questions about Bulbar onset
 
I'm in the same boat that you are - my mother was diagnosed with late stage bulbar onset ALS on 3-16-2012. Hospice started on 3-19-12. 24/7 in home care began 1 month ago. My mother does not want any life saving measures taken, hence no feeding tube, oxygen, etc. Her DNR document is on the fridge. Mother works to get down what she is able to "eat" at this point (from a spoon)...about 1/2 cup of mango smoothie & 1/2 cup of strained soup each dayOn mom has dropped from 229 to about 170. Mother is now wheelchair bound with assistance, but will still try to walk with assistance. On March 16, Mother's neurologist said that she'd die within 3 months...we're almost to 5 now. My mother cries for death - she was ready to go after 1 month into this journey. Hw is your mom now? And have you been given an idea as to how much longer she must endure thus agony? My mother fears running out of money - she's paid her bills through Dec. 2012, "just in case." Round the clock care is costing $10,000 a month. What to do?!

TreeB 08-13-2012 05:06 PM

Re: Questions about Bulbar onset
 
I am so sorry to hear about your mother. If she has decided to not do any life prolonging measures I would suggest finding Hospice care. My mother passed away on May 23rd so she lasted almost 3 months to the day of diagnosis. We could not have done it without the wonderful people from Hospice of Cincinnati. The very first day the came to visit they took a list of things we needed which were delivered within 24 hours. A new walker, wheelchair. recliner and an air mattress. Soon after we got a bedside toilet which was a life saver.

My mother was walking from bed to sofa up until a week before she died but with great difficulty. She weighed about 52 pounds at her death. Hospice provided a nurse once a week to check in and an aide twice a week but they were not there all day. My brother took family leave and I used vacation days toward the end. Call the ALS foundation and ask about volunteers instead of using private duty. Hospice also has a group of volunteers to help. It will be a tremendous weight off your shoulder if you let them help. My mom had very little bills left so I paid them off but we paid nothing for Hospice on her medicare plan.

My mom followed all the signs they told me to look for. She lost interest in food, slept almost all day, seemed confused at times and had very little urine out put of bowel movements. I could tell days before she passed that it was coming. She passed in her own bed surrounded by her four children. It was peaceful, pain free and a blessing. Keep me posted!

lege009 02-23-2013 12:17 AM

Re: Questions about Bulbar onset
 
Did u end up having ALS? I have almost identical symptoms to yours. I am scared

ALSGreyAngel 07-09-2013 10:59 AM

Re: Questions about Bulbar onset
 
In February 2012 my voice got slightly bad. By October I could barely speak and choking on the food. November my left foot was dragging. December 2012 I choked on almost every bite. I went to the ER on 12/14/2012. They put a feeding tube in on the 19th. By the 20th i knew I had Bulbar ALS. In February and March I climbed ladder to do a friends security cameras. In April 4 I was confined to a wheel chair or a hanging on something to walk. Last month my small muscles in my hands started to go.

i can't beat the disease but I can fight back.


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