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DgtofTNfan

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My dad is 69yo and has had progressive coughing and swallowing problems for over a year. He has lost a great deal of weight - 20+ pounds. His symptoms have progressed to include slurred speech and poor breath support. His PCP kept treating him for a cold and thought that his history of severe reflux problems were a contributing factor. His GI and PCP told him there was nothing more they could do and he just had to deal with his thickened liquid diet.

I then set him up with a rehab doc I know who likes to dig a little deeper. His physical exam revealed some weakness in his hands and some fasciculations in his tongue and right bicep. The hand weakness impacts fine motor control that dad thought was arthritis. He has had a CT of chest, MRI of the brain, EMG/NCS and was referred to a neuro muscular specialist in Lexington which he is to see this Tues. The EMG/NCS was not "particularly remarkable" however the bulbar aspect of ALS is highly suspected.

We took this info back to PCP and GI and now they have found he needs a G Tube and oxygen at night.

Today he started to have blurred vision. I have been reading about Myasthenia Gravis and given that it has a treatment protocol with good prognosis, I am hoping the specialist will find he has this or some other neuromuscular disorder that is treatable. The blurred vision does not seem to be highlighted in research that I can find as a symptom of ALS but seems it is possible in some cases.

Does anyone have a similar case as his or can you offer any suggestions for questions to the NMD physician at the appointment?

Thanks.
Dana - worried in KY
 

BethU

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Dana, I am so sorry for your dad's suffering. I hope they find that it is something treatable.

Myasthenia Gravis can often be detected by blood tests looking for certain antibodies, but even if your dad tests negative for those antibodies, he may still be diagnosed with MG on the basis of clinical exam. About 10% of MG patients are negative on the antibodies.

I presented with blurred vision and slurred speech, but I think it is quite rare to find visual problems in ALS. There are other neurological problems that have blurred vision as a symptom, so this symptom opens up many possibilities other than ALS.

Good luck on finding the answer. Always keep your hopes up ... these conditions are really difficult to diagnose.

And welcome to the forum. There is a special place in heaven for our caregivers!
 

Zaphoon

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Blurred or double vision is something that can occur with MS.
 

DgtofTNfan

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Thanks to both of you for responding.

BethU - I had read about the blood test for diagnosing MG. I asked him to make an appt with PCP and request the test but when Dad went in the PCP deferred the blood work to the specialist. Urgh. I had to work and could not go with but I will make sure I am at the rest of his appts with my parents. It is probably just as well since his appt with the NMD specialist is in a couple of days.

Zaphoon - I had not really looked at MS as he has no sensory deficits although I did see inappropriately cold body part listed which he has had intermittently so I added that to his list of symptoms.

The blurred vision does give me hope that something else is going on. I have been crying all week since I found out he is getting a G tube and was not breathing well at night. The blurred vision just started past couple of days.

I want the MD appt to hurry up and get here so we know more, but then I don't because we may end up with a definitive diagnosis we can't deny.
 
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