AngelaFlorida
New member
- Joined
- Dec 29, 2017
- Messages
- 2
- Reason
- Learn about ALS
- Country
- US
- State
- Florida
- City
- Tampa
I have a long story and I have read the stickies. I appreciate the information. This will be my only post. I just want your advice and expertise.
A year ago I woke up with my face numb all over but primarily my right side. I went to ER and checked for stroke. I was not having a stroke. I was told possible migraine. I went home next couple of days I was worse. 4 weeks prior I had received the flu and pneumococcal vaccine and had been on prednisone for a week. Anyway I started having a lot of all over pain which felt like I was hooked up to an electrical outlet. Then my balance was off plus terrible weakness in arms legs. I also had developed gastroparesis and severe nausea. I also couldn't walk for a week. I couldn't walk a block without collapsing and had to be in a wheelchair. There were more strange symptoms like orthistatic hypotension and tachycardia. All my labs were normal. MRI catscan all normal. Only abnormal was no esonophils my body had zero. So two months go by and in the first few weeks I had tons of twitching in my feet to buttocks but they subsided but returned in late January and were widespread. All over day and night. My gastroparesis orthistatic hypotension tachycardia went away after 5 months. I had lost over 20 pounds but improved after the 5th month started to eat again. The twitching never stopped. I went to neurologist had emg it was normal. 6moths later my twitches slowed down to what they are now I may have 10 in a day. I found a new neurologist in the 9th month who said I had had Guillain Barre. I want to accept this diagnosis but I had it in my head when the twitches didn't go away for so long I probably was going to develop MND. I am not so sure now. I want to ask has anyone ever heard of this happening to anyone who developed MND. Or has anyone ever heard of someone having widespread twitching for 6 months that slowed down to ten or less a day for the next 5 months. I want to move past this and have been on anxiety medication for months. So I am clear minded but the only people I believe who know this disease are those who have been affected by it. So your replies will mean the most to me. I will not reply or post again after today I just want your honest expert opinions. Bless you all.
A year ago I woke up with my face numb all over but primarily my right side. I went to ER and checked for stroke. I was not having a stroke. I was told possible migraine. I went home next couple of days I was worse. 4 weeks prior I had received the flu and pneumococcal vaccine and had been on prednisone for a week. Anyway I started having a lot of all over pain which felt like I was hooked up to an electrical outlet. Then my balance was off plus terrible weakness in arms legs. I also had developed gastroparesis and severe nausea. I also couldn't walk for a week. I couldn't walk a block without collapsing and had to be in a wheelchair. There were more strange symptoms like orthistatic hypotension and tachycardia. All my labs were normal. MRI catscan all normal. Only abnormal was no esonophils my body had zero. So two months go by and in the first few weeks I had tons of twitching in my feet to buttocks but they subsided but returned in late January and were widespread. All over day and night. My gastroparesis orthistatic hypotension tachycardia went away after 5 months. I had lost over 20 pounds but improved after the 5th month started to eat again. The twitching never stopped. I went to neurologist had emg it was normal. 6moths later my twitches slowed down to what they are now I may have 10 in a day. I found a new neurologist in the 9th month who said I had had Guillain Barre. I want to accept this diagnosis but I had it in my head when the twitches didn't go away for so long I probably was going to develop MND. I am not so sure now. I want to ask has anyone ever heard of this happening to anyone who developed MND. Or has anyone ever heard of someone having widespread twitching for 6 months that slowed down to ten or less a day for the next 5 months. I want to move past this and have been on anxiety medication for months. So I am clear minded but the only people I believe who know this disease are those who have been affected by it. So your replies will mean the most to me. I will not reply or post again after today I just want your honest expert opinions. Bless you all.
