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Felicia38

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Joined
Feb 5, 2009
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50
Reason
CALS
Country
US
State
Alabama
City
Phenix City
We went to Emory yesterday and we got some positive news. Dr. Glass thinks that Charlie(my husband)has Peripheral Neuropathy Vasculitis instead of ALS. He says that Charlie's immune system is attacking itself and that his nerves are having mini strokes.
Dr. Glass said he would do a muscle and nerve biopsy this week or next to confirm what he is suspecting and then we will begin treatment. As long as Charlie responds to treatment he should start getting better within 6-12 months. If he doesn't respond, than it will continue to attack his body in different areas and eventually it will be fatal. Dr. Glass said that his arm that he lost the use of 3 years ago may even heal to where he can use it again. WoW! If everything is the way he says it is this is the best news ever! The only thing is we have to wait for the biopsy to confim and then remain hopeful that the treatments will work. If the biopsy doesn't confirm this, then we are back to the ALS story. I sure hope it is what Dr. Glass thinks it is. I will let you all know when I know more. Thanks to everyone for all of the guidance, these past few weeks of waiting have been hard.
 
Felicia, that is fantastic news. I think a lot of Dr. Glass - he has always been very patient and professional with me, and they have not found anything to lead them in a direction for diagnosis, but I know if they do I will be in good hands.

Congratulations on a path to pursue. You're not out of the woods yet but that sounds very hopeful. Tell your hubby a good 'ol Georgia boy is thinking of him and has lifted him up in prayer.

God bless and keep us posted OK?

p.s. Enjoyed that Atlanta traffic didn't you?:p
 
Felicia,

That's great that he thinks it could be Peripheral Neuropathy Vasculitis. You and your husband are in my prayers....
Did Dr. Glass say what led him in that direction?
 
Ktmj, I hated the Atlanta traffic and thanks for praying for my husband. Dr. Glass does seem to be a good doctor, he didn't mind answering any of our questions and he seemed to be very concerned.

crystal, Thanks for keeping us in your prayers, and all I can remember him saying about why he thought Peripheral Neuropathy Vasculitis was because of his symptoms. He did say that ALS is not ruled out, its just that Charlie has I guess extra symptoms that suggest he could be having this other disease so Dr. Glass is going to biopsy the nerve and muscle (the way I understand it) to make sure. If the biopsy doesn't show what he thinks it will, then it is back to thinking ALS. While we were at Emory they did do the EMG test again and it took 3 hours, I didn't think they would ever get through with him. From what I can remember the emg test showed the same as the test that sent us there in the first place. I wish i could remember all of it and could actually understand all of it but I am still trying to wrap my mind around all of this. I can tell you his symptoms and maybe it might help. 3 years ago he woke up with his left arm completely numb and tingling like when your foot goes to sleep and it would not wake up, after several days he couldn't lift his arm far at all. He was diagnosed as having Parsonage Turner syndrom and told one day he would get the use of his arm back. Since then he has had severe fatigue in his legs, arms, generally tired all over. His pain is severe in his legs and hip area, sometimes arms, has had some night sweats-maybe even low grade fever, has to drink something with every bite of food, has had to sleep elevated, has urine problems, (it takes him about 3 minutes to start urinating and then his stream is weak and he has to go alot.) had severe headaches when all the problems with his left arm started. stumbles/balancing problem, has fell a few times, has had blinking problems, some twitching, and I am sure I am probably leaving something out. Dr. Glass said he thought it was PNV just by doing the test that he performs in his office, that was without any EMG test. I guess I should have ask more questions but I was so excited to hear that he thought it was something treatable that I couldn't think of what all I needed to remember or ask. THis has been a learning process for both of us. I am hopeful that we are in very good hands at Emory, we have heard great things about Dr. Glass.
 
Felicia, you can call his office and get a copy of the EMG/NCV that is very detailed. I know because I have done it. I called his secretary Jackie and she FAX'ed it to me within 15 minutes. You can also get a copy of Dr. Glass' notes from the visit if you did not remember everything. Always remember that test results and medical notes are yours - you paid for them and deserve to have them if you want them.

You can send me a PM and I will give you Jackie's number. I can't read the details of the EMG/NCV, but wright might be able to help you with some of the terminology and results.
 
Thanks for the advice, we have all of his other medical stuff we just didn't ask for a copy while we were at Emory. I guess because Doctor Glass said he was going to get us back in there within a 1-2 week time frame to do the biopsy, my husband talked to Marilyn and she said we should have our appointment time by Friday. I am not sure what Marilyn does there but she was the lady that took us to the EMG room.
She was very nice and she did give us the number to reach Jackie or Nicole and she gave us her number. Hopefully we will have the biopsy done soon and will know for sure what is going on and start treatment. If it is ALS, I am still glad that Dr. Glass is treating us, he seems very smart. Charlie did call and he left a message with Jackie.
 
That is great news Felicia!

It's rare to find a genius research doctor that is so compassionate and caring! Believe me you ARE in good hands! Dr. Glass and his staff will take excellent care of your husband. I hope and pray it's PNV and not ALS.

I hope you will keep us informed!
 
Thats great! Dr Glass knows his stuff.
 
I will keep you informed. Is there anyone that uses this forum that has Pnv?
 
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