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valoree

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My mother is only 51, was an avid walker and a generally healthy person until she turned 50. She began with coldness in her fingers which was diagnosed as Reynaud's disorder, no big deal. Then she began to feel fatigue, trouble swallowing, trouble moving parts of her hands, thickening of the skin on her hands and high muscle protein counts in her blood. She was thought to have Scleroderma and treated with steroids and immune suppressants but continued to lose strength, weight and control in her hands. She had various steroid infusions when the initial treatments didn't help and was scheduled for a muscle biopsy to look for Polymiositis. The biopsy was what led her doctor to believe she might have ALS and she was scheduled for an EMG which still didn't convince the neurologist that it was definitely ALS.
My mom was diagnosed with probable ALS on June 30, 2011. On July 1, 2011 she was rushed to the hospital with side/chest pain and upon arrival was found to have double pulmonary embolism and clots in her leg. We have absolutely no family history of clotting disorders and she'd been working full time and still walking, driving and keeping house. She was not at risk for clots in any way and I haven't heard a lot about PALS with clotting problems.
My mother has never exhibited many typical ALS symptoms. She's never had any twitching or cramping. Her EMG results have never fully convinced her neuro of a definite ALS diagnosis. Her progression has been extremely rapid, she's lost 20% lung capacity every 3 months since her diagnosis and is now under hospice care with, maybe, months to live.
When mom was still trying to find out what was going on with her health she saw a cardiologist who did an ultrasound on her heart and she wore a monitor for 24 hours. All of her results showed the heart of a 20 year old. Her lung tissue was totally clear and all other tests showed her to be in great health. Again, no family history of heart issues.
Last Saturday mom was rushed to the hospital with chest pain and rapid heart rate. The EMTs were sure she was having a heart attack before she was even in the ambulance. The ER process was crazy. Mom is a DNR and does not want to be intubated or have her heart shocked so the cardiologist at the hospital explained she was not really viable to go to the cath lab and get a shunt. We had to ride out a heart attack. We did and her blood results showed that this wasn't her first heart attack. She'd had a previous 'event' earlier in the week and they said that it isn't uncommon not to know it's happening. Two heart attacks?! A week later the various medications she's now on stabilized her heart rate and rhythm and we were released.

For anyone still reading, have you ever heard of anything like this? I find it hard to accept that the ALS, embolisms and heart attacks are just totally separate problems when she's been so healthy in the past and is low/no risk for the pulmonary cardiac issues. Have you ever heard of someone with ALS having these issues? none of the doctors at the hospital seemed very interested in exploring these questions. She's just a lady with ALS who had a freak attack and a freak embolism. I just feel like I'm going to lose my mom and never really be satisfied with what's happened to her.
 

Ms. Pie

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It can happen that a person has multiple conditions. I've never heard of all that's plaguing your Mom being attributed to ALS. I'm so sorry for your poor Mom's troubles.
 

jb63

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164
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This is quite complex and frightening. I am not sure about your mother's ALS diagnosis. Most docs can tell MND before symptoms appear just by seeing EMG.

Last nov. I was diagnosed with a total acute occlusion of all the deep veins of my stronger left leg. I have not genetic history of hypercoagulation and was worked up by a hematologist. Results were abnormal, but I am anticoagulated. Tests are still being done, something may show, but it most likely will not effect my MND diagnosis.
Did not get it from sitting or being inactive. Now I cannot walk and can stand with assistance most times. The clots took their toll, bedrest just hastened my atrophy and ability to use my good leg. Was using a walker with difficulty prior to the event.

My personal view is that the stress of major illness brings out the beast of imbalance. I think of it as a house of cards....
 

Alyoop

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If your mother is not able to walk or cannot walk much, she is at a much higher risk of clots which can lead to having a pulmonary embolus. Blood moves about the body much more efficiently when muscle contraction is aiding it, on it's journey back to the heart. If that journey is slowed due to a person being inscribe or bedridden, then it can slowly form clot a, which can break off and travel to the lungs.

If a neurologist is baseing the ALS diagnosis on the el escorial scale, then many people do not fit into the " definite" als criteria, even aftercthey have died from it. That's one reason they are tending to use a new and more accurate diagnostic criteria for ALS.
 

notme

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PALS
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08/2011
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Hi

Thickening of skin and Raynaud's aren't symptoms of ALS.

The blood clots can be caused by various things, of course. But have they checked her coagulation? Thickness of her blood. Without atrial fibrillation, if it's been ruled out, they need to find the cause of the clots.

Is the DNR because of the ALS diagnosis? Doctors can be hesitant to do more than treat for comfort when one is in place.

I'm 2 years older than your mom. Four years ago, I had sudden shortness of breath and went to an ER. They found clots in my lungs, brain and legs. I had a stroke several days after being released from the hospital from the clots. I have also had multiple mild heart attacks, though my echo looks fine, other than mitral valve prolapse.

They can treat clots with warfarin, and hopefully prevent more from forming. What did they say caused the heart attacks? Is there some reason they can't do a cardiac cath?

It could be more than one thing going on, but a very sudden decline in health just doesn't sound like ALS to me.

Signs of a heart attack in women can be nothing more than excessive tiredness. Some have back pain, and some the classic chest pain. Shortness of breath and nausea are also quite common.

Perhaps she might want to reconsider the DNR so they can treat the other issues aggressively, if otherwise the has a good quality of life still.

Best wishes to you all.
 

valoree

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Joined
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Messages
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Diagnosis
06/2011
Country
US
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WA
When the embolisms happened mom hadn't been sedentary/bedridden for more than a week and a half, the doctors were skeptical that a week and a half would have been enough time to form such large clots. She showed thickness in her blood and has been on Warfarin since the embolisms happened and has maintained a steady INR reading.
The echo of her heart last week showed no signs of clots in her heart and nothing abnormal in the way it's working (no valve issues etc) and only showed damage from the actual attacks with no evidence to point to a cause for the attacks. It's a mystery but none of the doctors seem very interested in why she's having so many non ALS related health issues with no prior risk factors. It's like they see her as a lost cause because of the ALS and have no interest in solving these underlying questions.

She signed the DNR after her lung capacity registered below 30% and she was put on hospice. She's made it known that she doesn't want artificial breathing aside from her BiPAP. Her quality of life deteriorated so quickly and so completely that I don't question her wishes at all.
She's still able to stand but not walk any distance because she gets so winded and it takes her a long time to recover, but this wasn't the case in early November. Her ALS progression has been aggressive and has taken less than 8 months to transform her from a working, walking, talking, laughing woman to someone who eats through a tube, can't speak (at least can't speak and be understood) can't walk, can't sit up or raise her arms enough to rub her own eyes. She went from using the BiPAP for 45 minutes just to get the feel for it to using it 24/7 in a matter of days. She was able to sit upright during my 30th birthday party on November 5th, and she stayed for hours without BiPAP and just sat in a regular chair with some pillows to help support her arms and back. 3 months later and she's unable to be off BiPAP for more than mere minutes and could never sit up like that for any amount of time.
I'm just frustrated and terribly sad. They tell you that the average is 2-5 years, not months and in July the doctor said he thought she had a slow progressing ALS because of her second EMG results. I know doctors aren't always right, but I wish one of them would pull a "Dr House" and write all of her symptoms on a white board and pop Vicodin until they figured it out.
 

Alyoop

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I shouldn't have laughed about your Dr House and popping vicodin, but it popped out. I can understand your frustration, can you go to your mums pcp and say, just that? You are correct I think, with the dnr and low lung capacity, they really don't care about the cause.......that's sad, but human nature.
You poor things. Unfortunately for some, ALS can be so rapid that it's hard to get your head around the progression. I think you mum is unfortunate to be in that group. Often once ALS starts progressing it's a bit like a stone rolling down a hill, it just speeds up as it gains momentum.
My thoughts and prayers are with you and your family. Sorry I can't say much to help.
Aly
 

notme

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Hi

I can tell you that my clots happened after an 18 hour car trip. They can happen fast if there are issues with thick blood. I'm so sorry she's deteriorated so quickly. All I can suggest is that they make her comfortable, if no cause other than ALS has been determined.

They've done lung scans to be sure she has no pneumonia or something treatable?

Best wishes
 

momap53

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Jul 2, 2011
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1,640
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PALS
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05/2011
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US
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GA
May god bless you Valoree. It's a difficult journey made even more so by the rapid progression your mom is showing. Spend as much time with her as you can.
 

LifesWorthLiving

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None of what i am about about to post is to sound insulting. I feel for you very much.

Embolisms and heart attacks go hand and hand. A heart attackis called a myocardial infarction...a myocardial infarction is basically when a coronary vessel gets cut off by a clot. Two types of clots.....embolic came from another part and lodges or thyrombotic, formed where it was found.....the stuff you shock is ventricular fib or ventricular tachycardia......the shocking stuff isnt a heart attack, its cardiac arrest.......cardiac arrest is frequently brought on by myocardial infarction.

I have treated a healthy 22 year old male for pulmo. Embs..........it was after a 6 hour flight

On a side not, would you be opposed to sending me a private message, i have a few thing to ask
 

valoree

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Jul 13, 2011
Messages
15
Diagnosis
06/2011
Country
US
State
WA
The House and vicodin thing was to make you laugh, but I mean it. I feel like, if I was a doctor looking at this woman who is so sick and missing key symptoms of ALS and showing various other systemic issues that I'd want to poke around a bit and solve the puzzle. Even if the solution is that she has crazy rapid ALS and also a separate heart/blood issue and also Scleroderma and also Reynaud's. It just seems so unlikely to me that such a healthy person could come down with ALL of those things in less than a year and have everything be unrelated.
It's pipe dreams but I keep thinking of all of the strange destinations she went to when she worked for a travel company. Guam, Micronesia, Auckland, the Aleutians... Is it crazy to think she got some jungle virus? Have I just watched too many medical dramas on tv?
 

trfogey

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Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
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NC
Have I just watched too many medical dramas on tv?
It's not that you've watched too many medical shows on TV. You've simply fallen prey to the idea that a number of health complaints that start occurring in a short period of time have to be caused by the same thing. You've also misunderstood some of the things that you've been reading about ALS and seized upon a couple of trees to hang your hopes on instead of seeing the entire ALS forest.

Contrary to what a lot of sites on the 'net tell you, twitching and cramping are not "key symptoms" of ALS. Everybody twitches occasionally -- some more than others -- and everybody gets muscle cramps -- also some more than others. The key clinical symptoms in ALS are: clinical weakness, pathological reflexes, changes in muscle tone, and muscle wasting (atrophy). Combine these with EMG evidence of chronic and active denervation in muscles that display the clinical symptoms of ALS and you get a diagnosis.

Those of us that are strongly lower motor neuron dominant often lose muscle function without ever having noticeable twitching or cramping in those muscles. The muscles simply weaken and stop working over a period of time. And once that muscle goes completely offline because of LMN damage (flaccid paralysis) before the UMNs controlling that muscle are damaged, UMN signs and symptoms can't be observed in it.
 

fitzroy

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Nov 28, 2011
Messages
98
Reason
Learn about ALS
Country
AU
State
VIC
If you'd like, I can list every country I've been to over the last eighteen years but it might take awhile. This includes three years in China until the end of 2010 when I began to become ill. In a period of 18 months, I've ended up with three auto-immune conditions and now the investigation into MNDs. My GP's even suggested Leprosy as a possibility, but he thankfully consulted an infectious diseases specialist and that one was struck off the list.

I sincerely doubt my world-hopping ways have had anything to do with my illnesses.

So yeah, it's possible to have multiple things happen around the same time in a previously healthly 48 y/o (at the time). The good, or maybe bad thing in my case is I've already been through an extremely thorough set of investigations and treatments on the AI front before seeing a Neuro.

Btw, you should visit Auckland. New Zealand has the strongest bio-security standards of any country I'm aware of.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
When my wife's legs gave out she began sitting, and that is when trouble came. She had a clot in Jan. of 11 and was put on coumadin. In August the clot had dissolved and unwisely the physician took her off the drug. Within 3 weeks she had a pulmonary embolism that almost killed her. Since then, her heart has ventricular arrhythmia and her BP is up also. She is stabilized now, but it took almost 6 wks. to do it. I would think that your mother had other issues going on besides ALS. I suspect the anxiety associated with the diagnoses did her no good. I do know that ALS affects other bodily mechanisms. Many other things seem to start going wrong with ALS.
 

valoree

Member
Joined
Jul 13, 2011
Messages
15
Diagnosis
06/2011
Country
US
State
WA
We are back at the hospital. Mom is septic from a severe UTI and mild aspiration pneumonia. The morphine she's been taking backed her up so we tried magcite to force a BM but she vomited instead and hasn't been right since. Less than 24 hours later and we are in the PCU again. Her EKG shows that her heart is working hard and at about half steam... Heart failure, sepsis and her INR (clotting) level was above ten (normal is between 2 and 3) so her blood is ultra thin.
On the upside, this hospital apparently allows dogs so we can have Dude in here instead of at home all alone.
 
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