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raystown90

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CALS
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My dad is a 76 year old, who was always the epitome of good health until about a year ago, suffering only from arthritis. In May 2007, he was diagnosed with a slow, irregular heart rate after a routine physical. He had a heart catharization and numerous tests done and nothing showed up other than the slow, irregular rhythm.

On March 30, 2008, he had a TIA, or mini stroke. Doctors couldn't really find a reason, so started him on some "preventitive meds." They also admitted him to the hospital because he had pneumonia. Two weeks to the day on April 13, he had a stroke that affected his right side. The stroke was caused by his heart being in an a-fib state where it was beating too fast and throwing clots. Thankfully, he recovered almost completely from the stroke and was doing fantastic. He did fall when he had the stroke, injuring some ribs and collapsing a vertebrae in his back. He continued to have aches and pains from these injuries and his arthritis got drastically worse after the stroke because they stopped his Celebrex arthritis medicine due to the risk of bleeding since he is now on the blood thinner Coumadin.

During a CT scan, lesions showed up on the bones of his skull. We were sent to an oncologist, since doctors feared bone cancer. However, all scans and tests came back negative and the lesions were contributed to numerous injuries to his ribs and spine over the years from construction accidents and falls.

A few weeks after the stroke, while still doing out-patient rehab, he started to get so short of breath and to feel sort of weak all over whenever he tried to do anything physical. He was always very active and being short of breath was not typical. We ended up in the ER one night when he could hardly breathe. Doctors at first suggested congestive heart failure, but ruled that out. Then they checked for a pulmonary blood clot and ruled that out. Finally, they treated him like he had COPD. That seemed to help for a little while, but not for long. They referred us to a pulmonologist, who said the COPD is mild. He continues to treat him with Advair and a nebulizer. However, his breathing has not improved very much.

He ended up having his oxygen levels monitored overnight with the company who set up the nebulizer. It showed his oxygen levels were dropping while he slept. So, we had a sleep study done on Thursday. It showed he has Central Sleep Apnea, which was most likely caused by the stroke.

While discussing the sleep study results with the neurologist, I asked if using a breathing machine at night would help with his shortness of breath and overall weakness. The doctor asked some questions, studied his hands, and asked him to stick out his tongue. He promptly told us that he suspects he has ALS. He ordered some blood work (I'm not sure for what...am still trying to get to the bottm of that one) and another sleep study. He also mentioned the possibility of rheumatoid arthritis that has moved into the muscles.

Whatever this is, it most definitely started after the stroke. I have researched a-fib, ALS, COPD, RA, CSA, and even Lyme Disease, because my dad had the vaccinations which have caused problems for others. They all carry symptoms that include muscle weakness and shortness of breath. I can find no mention of ALS being tied to a stroke, and was wondering if anyone else has had or knows of similar circumstances. Obviously, we're just getting started in the diagnosis process. We thought his weakness was just being caused by the arthritis taking control since the stroke. His arthritis is predominantly in his hips and knees (probably from years of finishing cement on his hands and knees). His fingers are also drawn from it too. It's the shortness of breath no one can explain. My dad is not experiencing any marked weaknesses (he's just tired/weak all over), fasciculations (unless the doctor saw one with the tongue), or muscle cramps. I know this is a lot of information, but if anything strikes a cord or anyone has recommendations on what sort of tests we should ask for, I would greatly appreciate it. It's all pretty overwhelming at this point.
Thanks for your thoughts.
 

BethU

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Joined
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PALS
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Hi, Raystown ... If your doctor suspects ALS and ordered blood tests, what he is probably looking for is evidence of Myasthenia Gravis. It is one of the "mimic diseases" that must be ruled out before a diagnosis of ALS is made. By mimic diseases, I mean something that has a lot of symptoms in common with ALS.

MG is an autoimmune disease, and shortness of breath and overall weakness are common symptoms. Respiratory failure is the most dangerous symptom of MG ... it is always a medical emergency when this happens. Fortunately, your dad survived his respiratory episode.

What the MG blood tests look for are antibodies produced by the thymus gland that interfere with messages from the brain getting through to the muscles, hence the weakness. The good news is that MG is treatable, and in many cases can be completely arrested. It is very rare, however ... rarer than ALS, I think ... but it would be wonderful if what is happening with your dad is treatable!

It sounds like your neuro is being very thorough. There are SO MANY possibilites with these neurological diseases it takes a real medical sleuth to sort through them all.

I'm keeping my fingers crossed that ALS will be ruled out!
Good luck!

P.S. As far as being connected to a stroke, some people claim that trauma, surgery, or other things can "cause" MG, but there is no evidence to back that up. And there is no link that I have heard of between those things and ALS.
 

Zaphoon

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DX UMND/PLS
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08/2011
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When I was being examined by my first neurologist, one of the first questions fired at me was, "Have you had any kind of stroke lately?" I hadn't.

Evidently, a stroke can cause problems that mirror some of those found in ALS from what I've been told. For example, in the aftermath of a stroke, one side of the body can become weaker; walking difficulties may ensue; breathing patterns may change and speech may become slurred. These same things may also be a result of progressing ALS (or any one of a number of disorders/diseases).

It sounds like your dad is in very competent hands and the origin of his problems will soon be discovered is my bet. Like the others that have already posted, I've not heard of ALS being brought on by stroke (but I'm not an MD).

Best of luck!

Zaphoon
 
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BethU

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PALS
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My first diagnosed was stroke, but I've never heard it mentioned as a cause of ALS, or any other disease.
 

lydia

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My GP and neuro both originally wondered about stroke as well since I had left-side "issues".
 

freddiesnetty

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Freddie had bells palsy in 2000, I have often wondered about that........Just a thought
netty
 

ptich

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I beleive that head trauma, vaccinations, and stress attack were mentioned on this forum as triggers for ALS. May be now we should add stroke to this list. It is likely that incipient ALS was already there, and the trigger just moved it to a more obvious phase. Who knows...

It's a pity that no doctor is looking at this forum (or at least we have no evidence of that).
 

katekath

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CALS
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SG
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SG
I beleive that head trauma, vaccinations, and stress attack were mentioned on this forum as triggers for ALS.

I was told by one of the doctors caring for my mum, when she was in ICU that stress is a factor in aggravating ALS. It seemed true to a certain extent as my mum progressed faster after my verbally abusive father "attacked" her more viciously every day and night after she started seeing a doctor regarding her muscle weakness. Her neurologist wasn't expecting her to be placed on trach that soon.
 

raystown90

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CALS
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Thank you for all of the responses so far. I too was wondering if the stroke could have just been a trigger that brought on the other symptoms. My dad is starting physical therapy again today for the back injury he is dealing with. The neuro told us that should help with the overall weakness at the same time. I've spoken with the therapist, and he is considering some hyrdrotherapy. We next meet with the GP on 10/23 and the neuro again on 10/27. He did mention doing some nerve studies.
 

freddiesnetty

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Messages
239
Diagnosis
12/2006
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Tx
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I do also believe that head trauma wakes this up...........Freddie was fine, fell off of a stage landed on his neck and complained of numbness in his arms..We went to the gp and there was no injury to to spinal cord, he thought....Then we went to the neuro and they did alot of testing and decided that they would do a lamenectomy sp? and carpal tunnel, Well after 3years of being undiagnoised. We finally found a neuro that worked under the ALS specialist here. He was the one that gave Freddie the diagnosed.

Every time he would have a fall, the progression would speed up...This month will be 2 years since Freddie was on the stage, We literally carried him up there and he had several body guards in case he started to fall. Then they carried him down after the show....It seems like yesterday. At the end of the show I remember fireworks going off for hours it seem liked, They did a tribute to Freddie and our son played the National Anthem, Freddie was the next Hendrix and he was known for playing the anthem. We all knew that was Freddie's last.............Well things happen for a reason. I could go on for days about the good ole days..............But like I said things happen for a reason, I shouldn't even be typing this, Freddie had gotten signed to Sony and we were suppose to be touring in Europe. Oh well, I hear it rains alot there.................lol..................

Sorry for rambling...
netty
 

awieleba

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oh Netty,

It sounds wonderful the life of entertaining that you all had! You are a beautiful soul!

It is strange about the head thing, I was in a car accident when I was 8months pregnant. I was hit on the driver side door at 55mph and my expidetion was totalled. I hit my head so hard on the door and spent the next 12 hrs at hosp for baby. we were ok but that was the 2nd car accident that i hit my head in 6 yrs! who knows?
 

Brenda_W

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Mar 13, 2009
Messages
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Loved one DX
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US
State
OH
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Toledo
My husband Al had a stroke on 10/6/2006 in the vertex of his temporal and parietal lobes. He suffers from central pain syndrome and has gotten worse over the past two years. His muscles initially were twitching in his right arm and leg. Now his right backside, arm, leg and left arm and leg twitch as well. Additionally, he has been having times when he is lightheaded and feels like he's going to fall. Sometimes, he has a thing happen where things get dark from top and bottom (like a camera shutter) and then it goes away. His right foot has gotten stiffer and sometimes he drags it a bit. He was limping today. His forearm and neck cramp constantly to the point where he gets severe headaches and feels like throwing up. He also gets cramps in his leg. Along with that he has a problem in that he feels like he gets a kind of electrical shock that stiffens his entire back, typically when he's laying down. He also had to get his asthma inhalers increased because he's having more trouble with the asthma. He has also started to really snore at night.

Our family physician has ordered 2 emg's and an MRI of his neck. He's also going in for a tilt-table test for his heart.

When Al went to visit the neurologist yesterday, she told him that all of his symptoms followed ALS, not a stroke. He said that he looked stunned and she said "well, you don't have that because you'd be dead by now." What a weird thing to say. She then referred him to another neurosurgeon who will go down the same checklist.

To say that I am scared is an understatement. I feel like I grew up with ALS as I lost my dad to the disease when I was 9 years old. Any thoughts would be appreciated.

Brenda
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Hi Brenda,
I don't know about all the symptoms you describe, but my best friends husband had a stroke in 2006 when he was 47 yrs. old. He has muscle spasms and twitches constantly in his right arm and right leg. He really stiffens up easily in the cold and with lack of activity. And he does drag his right leg when he is stiff. His stroke was caused by "sticky blood syndrome"--sorry I can't remember the technical term, but he has to stay on blood thinners and has monthly blood work to ensure that his blood doesn't get too thick. He is followed closely by a neurologist who specializes in strokes, and he sees a hematologist twice a year too. It sounds like your husband's neurologist was very insensitive with her comment. Forgot to say that my friend's husband gets botox injections in his leg to help with the spasm and stiffness. I wish you both well and hope things improve for your husband. My friend's husband really gets depressed since he hasn't improved much since his stroke. From what you describe, your husband's symptoms do sound like they are related to his stroke and not ALS. And with the increased snoring, he could have some sleep apnea. That would be worth investigating with your family doctor as well. Sleep apnea can lead to heart problems, headaches as well. Take care and keep us informed of how things go.
Laurel
 

Brenda_W

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Mar 13, 2009
Messages
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Loved one DX
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US
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OH
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Toledo
Thanks for your reply

Hi Laurel,

Thanks for your reply. Al had an aneurysm in his internal carotid artery that was misdiagnosed as a blocked salivary gland. He had trouble swallowing and had a procedure to dilate his esophagus. While in the procedure, the doctor must have bumped the aneurysm and sent clots to his brain.

Al is on Zanaflect, Neurontin, Plavix, and about 10 other meds to help him deal with his issues. I truly appreciate your sharing about your friend's husband (Al is 46). It has made me feel much better. We are going to put him through a sleep study for the snoring to see if that helps.

Thanks again,

Brenda
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
You're most welcome Brenda. Keep us updated please.
Laurel
 
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