Old 01-12-2019, 11:39 AM #31 (permalink)
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Default Re: So worried

Some have asked for updates from my appts so I will do so if that's ok. I met with my neurologist and have had significant atrophy within last two months of seeing him, a trophy on my right leg as well as atrophy under my ribs on my right side. He took the measurements and was concerned with my manometry results and bulbar type symptoms and does believe it to be a MN disease however he is sending me to shands at neuromuscular clinic and could not understand how USF clinic could tell me I am fine. Especially with atrophy on top of my right foot, right quad and tongue, slurring speech. I will update you next week after Shands. Thank you to those who have reached out with words of kindness in this difficult time and thank you to those who have provided their thoughtful and warm comments.
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Old 01-12-2019, 12:07 PM #32 (permalink)
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Default Re: So worried

ALS does indeed have “mimics” and as we all know there are other MMD’s. I hope you find your answer soon. I chat with a woman who had a very complicated situation with diagnostics and is now finally on the mend from MMN with proper treatment. It took Mayo Rochester and the U of MN Minneapolis both to unravel it.

Best wishes and thanks for keeping us posted.
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Old 02-04-2019, 07:12 PM #33 (permalink)
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Update, this has been a very complex diagnosis process, at this time after an MRA, transcranial doppler indicating abnormally high pressure in my cerebral arteries and an angiogram the diagnosis is sero-negative polyarteritis nodosa an extremely rare form of systemic necrotizing vasculitis that has attacked my cerebral arteries, kidneys and other organs. Drop foot is most likely from the one sided weakness that this disease can causes as well as a newly discovered congenital defect of a missing carotid artery that is now showing symptoms due to the narrowing of my other three cerebral arteries. Thank you to everyone for your thoughts and opinions through this process. KAREN you were on the right track I had met with three rheumatologists and they all dismissed me, my neurologist dug his heels in and discovered this diagnosis along with a vascular interventional radiologist. God bless each and every one reading this.
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Old 02-04-2019, 07:26 PM #34 (permalink)
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Default Re: So worried

My goodness- that's very complicated and must have taken some very dedicated detective work from your specialists. I am so glad you have received some answers despite the severity of issues and can now work on mitigating some of the symptoms. Thank you so much for returning to let folk know the outcome of all the searching.

Please take care of yourself, and very best wishes.

~SK
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Old 02-04-2019, 07:29 PM #35 (permalink)
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Default Re: So worried

Thank you for reporting back. I am glad you have an answer finally and that your neurologist was able to figure it out. Best of luck
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Old 02-04-2019, 08:21 PM #36 (permalink)
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Default Re: So worried

Amy, thanks for reporting back. We knew it didnít sound like ALS. Iím glad you finally got an answer. Shame on those rheumatologists for missing it.

PAN is serious but can be treated. Yes it can cause foot drop and can cause failure in multiple organ systems, in addition to the central and peripheral nervous systems.

Anyway, I wish you the best, and Iím glad it didnít turn out to be ALS.
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