Hi everyone I was wondering if someone can help me. On Sunday I had a bad day stumbling about I lost vision temporarily. Then yesterday I went to get my bloods done. I then went to the pharmacy and I became very pale. Then had an episode of crying and not moving only tears. They laid me down and they called the doctor. As my neurologist has not got back in touch my doctor is referring me to another one through private medical insurance. Now I'm in pain and my doctor is keeping a close eye on my symptoms. He's read my notes from Spain and they were looking at many things my immune system attacks itself from what I understand. So now I can't drive. I have also had the stroke's confirmed. My face on Sunday & yesterday was dropped on the right. I refused hospital treatment because where I live I'm terrified of going. They treated my mum so bad. Sorry if this doesn't make sense but the tears and paralysis yesterday scared me. I have had it before the last stroke was in December. So now my doctor is going through my notes. Anyone who can relate to these symptoms please can you help me? My husband gets home next week so this is scary for my children although I do have good friends helping.
My wife Kim has FND and can sometimes have stroke like paralysis on the side of her face because it can droop on the side, although she hasn't actually had a stroke I must confirm.
She sometimes can get the paralysis where she cannot move on the spot and this happened last week.
Unfortunately, the only thing I can do is just stand next to her until the symptoms start to subside.
It is very scary and it brought tears to her eyes too, just like you.
I'm sorry I can't help more, although I'm positive you'll get more replies.
You are not alone with this trust me and any help you need will come from this site Ali because we help each other.
Any further help then please don't hesitate to ask ok.
Loving wishes and prayers to you.
Tony & Kim xx
Hi I also have had several what I call strokes my entire left side is paralyzed any where between 10mins to an hour but my face has only drooped a couple of times.
My neurologist didn,t seem to worried about it although it can be scary he said its not causing any permminant damage my mri,s have also been clear.
• in reply to
Hi Rich65,
Nice to hear from you!
Yes they are scary my paralysis can last up to a week then I'm just worn out.
My MRI's have showed some leisions that was back in 2015. Now my legs seem unsteady and pain in both legs feet and honestly my right leg & arm burning sensation I just want them off. Well that's how it's felt since December since I had another TIA.
If my new neurologist is no good I'm going back to Spain to find out but because they kept changing my anti sezuire meds some sent me crazy. I kinda just wanted to stay away and keep on the tegretol.
Take care Ali x
Heck I am wiped out after an hour,s paralysis.
As far as a good neurologist it,s a post code lottery the first one I went to see was a complete disaster actually made me feel worse and I wanted to just give up. The one I have now in a different county is brilliant so don,t give up they are out there all the best Richard.
We have a Keebler over there who has similar symptoms . Let me see if I can find what doctor helps her and Inwill let you know. Might take a few days. I know Edwards and Stone are good.
Hi that would be great thanks xx sorry I'm upset right now by a post that saybrookgirl posted then took down. Saying I should think about my children. Well I do everyday not easy when you have no family around. Also my son is seeing some medical professionals.
Love Ali xx
Sunshine.
You keep in touch here if possible. We all want to know you are alert and OK when not sleeping. I am hopeful friends are close by if not with you now.
You are having real rough time and it is not real clear what may or may not be going on with you. Needless to say, seek medical help when you feel you need it.
Will monitor posts as will others I am sure. We want you safe and sound.
Much love from a friend.
Dan / Seattle
• in reply to
Much love and thanks Dan I'm ok today just tremors and headache.
My friend who I met though my daughter is a nurse and she drops by.
She wanted me to go to hospital but no not here. I'm afraid.
My husband is back home next week. So I'll wait.
My face is back to normal now just tremors & headache and a bit breathless. My right arm & leg is painful and heavy.
Much love from me to you my friend.
Ali xx
Hi Sunshineali
I have just read your message, I now it's hard to do. Try and relax, I do feel for you as the attack you have had was the sort of attacks I get at the start of garlic season, one of the triggers to me. Going to hospital each time, with tests and scans. My symptoms used to last a week, sometimes 2 weeks.
The more I talk the more the symptoms match mine. I even get Anaphylaxis shock for different foods, but when done tests nothing.
Take care
Try to stay calm and relax.
Thinking of you
Colin - Isle of Wight.😊
• in reply to
Hi Colin,
Thanks for your message.
Bless you'll know how distressing and I also feel embarrassed when I try to speak. Which makes me tearful.
My first is very bland because of ulcerative colitis. So I avoid everything with onion and garlic.
Please keep in touch.
And thank you!
Ali x
• in reply to
Colin - Isle of Wight.
You are always so steady and reassuring in your words. And, you are so very thoughtful to Ali. This must have been a long journey for you with these symptoms too. Sounds like it has been wide ranging in severity and presentation. Your experience with it shines through with your help to others.
Thank you for being here for us all. The garlic season effect is new to me. Is it an airborne allergen and has it affected you all of your life?
Write again when you can. Best to you and thoughts for a better day today for SunshineAli.
Dan / Seattle
• in reply to
Hi
No I haven't always been allergic to garlic, I have noticed that when garlic comes into season, my symptoms become worse. So from March when wild garlic comes into season til October when the other garlic comes to a end. Living on the island and having a garlic farm within 10 mile of me. I'm that sensitive to it, even smell etc effects me. Even to stage I had a anaphylactic shock to it. But test's came back clear. It also happened to with a bag of nuts, with same results.
I am going back to do a eating check to see if it happens again.
So I'm preparing myself for a bad time ahead.
Colin - Isle of Wight
• in reply to
Amazing Colin.
Going into state of shock really dangerous. Sounds like true hypersensitivity. I hope someone figure this out for you.
That is way too many months of exposure.
Regards,
Dan /Seattle
Thank you for sharing the information. Clues to this medical mystery are welcomed!
• in reply to
I'll keep you in my thoughts Colin.
Keep us updated when you can.
I want you to know also that I value every word you say along with some of the other very special lovely people on here.
Take care and we'll speak soon.
Your friend Ali x
Saybrookgirl... has sent me a notification but looks like she has decided not to post!
Mentioning my kids.
I should think about them! I do please no negativity.
Hi sunshineali, I know how frightened you feel and scared, when I got lost in my head and had to follow my partner voice to come out, I was out of control, I phoned my poor dad and cried as never been so frightened and lost, I keep thinking now what if my partner hadn't been here as most days I am on my own. I really feel for you and myself and everyone suffering this dreadful disorder. We just left to struggling alone in pain and fear, at least I know I'm not alone feeling like you do now you've wrote. It's so scary not knowing what's next or why things change so quickly. Your not alone, scared and crying, I'm there with you too. Big fat hugs coming to you 🤗🤗🤗🤗🤗
• in reply to
Lisa-anne.
Your reply to Ali was terrific. I so agree with the way you expressed what it is like in the midst of attacks. For years, I could never explain to others from the inside looking out.
You have helped me today understand how difficult the days have been. Thank you from heart.
May pain be less and may joy be just around the corner.
Your good friend.
Dan / Seattle
Hi Lisa-Ann,
Sending you hugs back I'm a bit upset right now but will message you later xx. But thanks your kind words have touched me xxx and biggest hugs back 🤗🤗💕
Thank you for reading what I have wrote, that is enough for me, to not suffer alone is a huge comfort when I'm down and crying where no one knows so I don't upset them 😊😊😊
This has been the most beautiful and heartfelt thread I have read. The love and support shown here is phenomenal. It makes me also feel not so alone. Xxx
• in reply to
Morning C-B-S,
Awww please don't ever feel alone.
There is some truly lovely & helpful people on here. You'll always have someone to speak to or help you out. Give you strength and some great support.
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