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marymunson

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Apr 28, 2015
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CALS
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US
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az
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phoenix
I need any insight I can get my dads symptoms started in may 2012 with weakness in his right hand now he is a complete paraplegic but his breathing is totally normal and he swallows with no issues. Back in 2012 my dad had a cancerous tumor removed from his vocal cord, the cancer scare made my dad quite drinking. My dad is not a drunk by any means but he has suffered with Rheumatoid Arthritis since he was 17 years old so his joints are shot for the most part, he has two artificial hips and other artificial joints. My dad would drink to calm the pain but when he found out that he had the cancer on his vocal cord he stopped drinking cold turkey and that is when the weakness and falling started. My dad was referred to a neurologist and they thought Wernicke–Korsakoff syndrome (WKS), anyways that was wrong so he went to another neurologist and after a couple tests that doctor said my dad had CBGD which is in the Parkinsons family. So after that diagnosis we went to the Mayo clinic and they said that it is not CBGD but classical Parkinson's so my dad started to take sinemet and other parkinson's meds but my dad continued to decline. After several months of going to the Mayo clinic the neurologist finally sent my dad to get another EMG (ones in the past came back negative)because she said that she was noticing weakness after the results from that EMG came in she told us that she could no longer help and she referred us to an ALS clinic and my dad has been going there for almost a year and yesterday at his appointment while the doctor was examining him he was very confused then he had the Physicians assistant come in and she was super confused my dad said that he was seeing double vision and his vision is blurred so she examined his eyes and was saying something about his face no longer being symmetrical. I am so frustrated because we ended the appointment with my dad's ALS doctor saying he wasn't sure if my dad had ALS or Parkinson's he said for diagnosis he would keep ALS but that my dads case was so off and confusing that he just doesn't have an answer.
I am the one that takes care of my dad with my mom and things are already so hard but the uncertainty is killing me PLEASE HELP
 
I am sorry you are going through this. Are you going to Barrow? If you are in a good place with a doctor you trust a question might be what are the possibilities remaining. If it is ALS versus advanced Parkinsons as you said is there ANY difference at all in treatment now if you decide one of the other? Sometimes the label really does not change the treatment or the prognosis. It sounds as if you have been going there for a year and were satisfied with the care? And got scared by the visit and the uncertainty? Sometimes doctors get a little carried away by an interesting case and forget to communicate well with the patient. If this is all the case call the clinic and talk to someone. Maybe the PA. If you don't get the answers or if you are not comfortable with the PA you could insist on the doctor calling you back
 
I just feel so confused has anyone ever heard of MG (Myasthenia gravis)
 
Certainly. There are specific tests that would be done if that was on the list. Who mentioned it and in what context? Related to the eye issues I expect? If they are seriously considering it as opposed to mentioning it and discarding it while talking between themselves ask if he should be tested and if not why not. You need to talk to the clinic tell them the things that were said yesterday that worry you and have them explain.
 
no they never mentioned MG I came across the disease with my own research but they were so confused yesterday at the appointment that I now feel uncertain MG is an autoimmune disease and my dad has suffered with RA which is an autoimmune disease
 
I'm so sorry you are distressed this way. You must listen to Nikki and call the clinic and find out exactly what they are considering or you are going to worry yourself into a real state. You've already done that really by the way your distress shows in your posts.

We can only guess, but your clinic and doctor have a responsibility to explain it all to you. Please contact them and let us know.
 
Mary -- a clarification, pls -- one post you said your dad is quadriplegic (arms/legs paralyzed), this later post says para (one or the other still works?)

Your dad certainly has the right to continued workup if/as treatment and support could benefit. Does he have Medicare? SSI? Are there programs that hinge on the answer you seek? Is he continuing to decline or has he plateaued?

So if everyone where you are is throwing up their hands, you can go to another hosp. or ask for a clinical conference where the neurology folk convene and agree on a diagnostic plan. "Assuming" something like ALS doesn't make much sense. Do you keep copies of how they are coding his visits? I would get all his tests, reports, chart notes, etc. together so you have that documentation.

As Nikki and Tillie say, worrying isn't going to help. I feel certain there is a path to a more definitive answer, but knowing what it is may not change the future. Still, your mom and you do that every day, by caring for your dad.
 
I really not trying to worry I am mostly trying to find answers :) my dad has no use of his arms and legs cognitively so he doesn't walk or stand or really do anything we have to do everything for him but when he gets the muscle spasms his arms and legs will lift straight up. We had come to terms with the diagnosis of ALS and we have developed a fantastic home health care group and we had come to "it is what it is" but after my dads appointment yesterday and the obvious uncertainty I am wondering if there is a glimmer of hope with this disease Myasthenia Gravis. The doctors at the ALS clinic never mentioned this disease I came across it in googling ALS misdiagnosis. Right now they have my dads diagnosis as atypical ALS with Parkinsonism. The newest symptom is the eye weakness my dad can no longer use the eye gaze and he is having double vision which really had them scratching their heads yesterday. I did call both Mayo clinic where my dad was seen for parkinson's and I called the ALS clinic to see if they have done any testing to rule out this myasthenia Gravis ..... I still have not heard back from them. even though my dad has no mobility he still can breath fine with oxygen levels at 98 and he swallows no problem. Also when I am with him I can tell there is a missing connection like he wants to move but his brain won't let him
 
Mary, I hate to suggest Googling any disease, but take a look at Progressive Supranuclear Palsy. It is often mistaken for Parksinsons, with inabilty to focus eyes being one big difference. It's also extremely rare. I have a friend whose husband suffers from this, and his journey sounds a lot like what our PALS go through.
 
we have been told that it is not PSP because of positive EMG showing muscle weakness
 
also the complete immobility is very strange and doesn't match PSP CBD Parkinsons or parkinsonisms
 
gosh I am so sorry. but it sounds like the doctors are trying to figure it out and you are at a good hospital. Honestly, you will get yourself worked into a tizzy trying to self diagnose or trying ot get us to diagnose. It sounds like a stressful situation for sure, but for now all you can do is keep on the doctors and keep taking good care of dad and mom. I sure hope it is something that has a better out look than ALS.

Hugs to you
 
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