Bulbar onset

jmfl · 10-28-2009, 01:27 PM

My father is having difficult swallowing (especially liquids), slurred speech and sometimes unable to speak at all. He says it feels like his tongue gets in the way. He is 78.

He had a CT Scan yesterday to determine if he has had a stroke.

He is being treated at a major medical center that has an ALS clinic. My question is, if the CT Scan comes back negative (and I think it will) should I ask for a referral to a neurologist or should I ask for him to be referred directly to the ALS clinic?

Obviously I hope this is not ALS but my dad lives with me, I see him struggling and getting worse by the day. I've done the research and it does not look good.

laurel · 10-28-2009, 03:19 PM

Has Myasthenia Gravis been eliminated as a diagnosis? Good luck, and I hope it is MG and not ALS.
Laurel

BethU · 10-28-2009, 04:09 PM

imfl ... it is up to a neurologist to determine if your dad needs a referral to an ALS clinic. There are a number of things that need to be evaluated and eliminated before such a dx should be considered. I assume the medical center will tell you what the next step will be after the test results are back.

Keep a positive attitude as much as possible (I know it's really hard), and let the doctors make the calls.

jmfl · 10-28-2009, 04:57 PM

Thanks for the responses.

Myasthenia Gravis has not been eliminated. I am almost afraid to hope for that.

Yes, I am trying to stay positive but the reality is that my mother, who also lives with me, is physically disabled and my father is her primary caregiver. So I do need to do some serious planning for the worst case scenario. If it doesn't come to be, great. But if it does and I'm not prepared it will be a disaster.

So next step: neurologist. Anybody have any recommendations for neurologists in San Francisco, preferably affiliated with UCSF. Stanford is also in option. We live halfway in between the two facilities. We are extremely lucky to have easy access to excellent health care.

BethU · 10-28-2009, 10:39 PM

You're right, of course. We must always prepare for the worst and hope for the best.

Don't know any neuros, but UCSF is a great center, I hear.

Good luck.

jmfl · 10-29-2009, 01:01 PM

Beth,

Thanks for the support. I really appreciate it.

Dad got new glasses and they have not helped to alleviate his blurred vision. Also I noticed yesterday that his speech was much much worse in the evening than in the morning. Both of these things have me thinking it might be reasonable to hope for an MG diagnosis. Then again, I can easily find examples of PALS on these forums who have experienced these things.

It's easy to drive yourself crazy overanalyzing the symptoms, isn't it?

Julie

laurel · 10-29-2009, 02:13 PM

It sure is easy to over analyze, but the diurnal speech and the blurred vision are MG symptoms. Take care Julie.
Laurel

jmfl · 11-01-2009, 11:04 PM

My dad was admitted to the hospital on Friday after his symptoms worsened significantly. The good news is that he does NOT have ALS. Initially the doctors thought MG for sure but tests did not bear that out. Now the tentative diagnosis is Miller Fisher Syndrome, a variant of Guillain Barre. He is responding to gamma globulin.

I just wanted everybody to know that it is possible to have every symptom of ALS and still not have it. We are so grateful that my dad is getting better.

Thanks for helping.

Julie

BethU · 11-01-2009, 11:07 PM

That is so great! It sounds like a scary condition, but it seems to be treatable, and your dad is responding.

We need all the good news we can get around here. Thanks for letting us know.

Take care ...

laurel · 11-02-2009, 12:23 AM

Julie that is so much better than ALS, but he will have lots of hurdles yet. I wish him the best. The GBS/CIDP Foundation is very helpful with info. and they have some good forums. GBS/CIDP Foundation International
Laurel