Good news. Well...

[Clearwater AL]

Monday I saw one of the most renowned ALS specialists... Dr. Richard Bedlack of Duke University Medical. This was just the 1st visit to Dr. Bedlack without any reports/MRIs & etc from my regular Neuro Doc but Dr. Bedlack said, "I don't think you have ALS." Dr Bedlack is the foremost contributor to ALSuntangled. He did just a physical exam but Dr. Bedlack knows ALS when he sees it. The good news. Now the other news, after my appt.
with Dr, Bedlack I had a long conversation with my regular Neuro Doc. He said he hadn't told me yet but he feels I am looking at PLS. A rare form of ALS. Along with being rare I have another rare thing that may have been clouding the picture. My Ortho Doc said that Ortho Docs can look at 10,000 MRIs before they see a ruptured disc in the Thoracic
section in the spine. This is a very complicated part of the spine. Few surgeons are eager to operate there. So for now... good news. Kinda. (I'm cornering "rare")

 

[ottawa girl]

Hopeful news for you Al. That's great.

You're not out of the dark forest, but closer to its edge where light shines through.

So tell me, is Dr. b. as nice as he appears to be in various interviews I've seen on you tube?

 

[Clearwater AL]

Yes, Dr. Bedlack is very nice and his dedication to ALS is above and beyond. I was very, very fortunate to be seen by him. We all can be thankful he is a leader in debunking these
people who claim they have the cure for ALS.

 

[Nikki J]

Hi Al
How confusing for you! I am puzzled by Dr Bedlack saying no ALS after an exam and the other neuro saying PLS. PLS as you probably know if a disease of the upper motor neurons. This is determined by history and exam. What differentiates it from ALS is the absence of lower motor neuron involvement which is seen on EMG. When Dr Bedlack examined you he would surely have noted these umn signs and commented on them to you? And seeing them without having access to your EMG would not have excluded ALS? What did he say besides not ALS? Will you be following up with Dr Bedlack?
PLS is certainly preferable to ALS but none of the above would be better still!

 

[Clearwater AL]

Yes, there will be another appointment. He had no info on me. All my records from my Ortho Doc, the Pulmonary Doc, the swallowing test and my Neuro Doc (his EMGs & NC tests) have been collected and will be delivered to his office next week. These are not VA (Veterans Admin) Docs.
After many years of dealing with the VA... I actually requested and paid for all these records and will be hand carrying them to his office. This appointment was through the VA Prime Care (because they provide my Baclofen) and he had no previous info/history other than me sitting on the examining table across from him. It's the way the VA works. But, from the exam and him saying, "I don't think you have ALS" was reassuring and a relief. It was MY Neuro Doc who felt from his info, exams and tests it was in the arena of PLS.

 

[Clearwater AL]

Nikki J, I'm not clear from your "Forum Interest" byline... do you have ALS or PLS?

 

[Nikki J]

I am preFALS presymptomatic familial ALS. I have my family gene but no ALS symptoms yet

 

[sadiemae]

Al, if you can get a Doctor to classify it as ALS, not PLS, you will get tremendous VA benefits. They will not give benefits for PLS.

 

[ECpara]

Dr. Bedlack diagnosed my husband Feb 2012 at the Duke ALS clinic and continued to see my husband until we moved to GA. He recognized ALS in my husband right away, confirmed through an EMG. His dedication and broad knowledge on the subject is apparent. He has a few interesting YouTube videos on ALS for anyone who is interested. Our visits to the clinic were highlighted by his wild and zany wardrobe!

 

[Clearwater AL]

Sadiemae... Thank you for the reply. I have been told of the benefits and please don't take this wrong... benefits have been the last of my thoughts. My wife has Alzheimers Disease. The last thing she needs (me too) is for me to have a fatal disease. Fortunately we are somewhat financially secure and have excellent insurance . My heart goes out to those dealing with any horrible disease who struggle financially have crappy insurance or none and deal with a disease like ALS. (For those of you who are... I think of you often.) My thoughts on the word "benefits". That word rings wrong with me... to me it's just plain "help". Thanks again Sadiemae.

 

[Clearwater AL]

See above.

 

[sadiemae]

Al, I understand. My husbands ”benefits” from the VA were taken away, as they made a mistake, since he was Army National Guard, as nd his Active Duty was for ”training” We made financial decisions based on the Governments promise of benefits, and when they took them away, it ruined us. Blessings to you and your wife.