FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
07-18-2008, 10:20 AM | #1 | |||
|
||||
Wise Elder
|
My mom was told by her neuro that she does have mg. She isn't showing symptoms right now compared to her previous appointment. The blood work did confirm the diagnosis.
Her neuro has decided that if she isn't showing symptoms he's not going to treat her with the meds for mg. Her only possible symptoms right now are extreme tiredness after being out for a little while and eye twitching/blurriness. However, the blurriness seems to have lessoned since her last appointment. It's hard to know what is what because in February she had brain surgery to remove a tumor that was benign. It was a calcium tumor and they got it out. The hard part is figuring out what symptom is from the surgery and what is from the mg. For now, it's a wait and see game. Does anyone else have mg but not being treated?
__________________
. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
|||
Reply With Quote |
"Thanks for this!" says: | tkrik (07-18-2008) |
07-18-2008, 10:49 AM | #2 | |||
|
||||
Wisest Elder Ever
|
I'm sorry about the dx Sandy. I don't have any advice...don't know much about MG.....just wanted to tell you I'm sorry and give you a .
I know you've been through a lot with you Mom these past months. I hope things settle down for you (and her, too). I'll keep her (and you) in my prayers.
__________________
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
|||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-18-2008) |
07-18-2008, 11:12 AM | #3 | |||
|
||||
Senior Member
|
I'm so sorry Sandy.
__________________
Hi, I'm Julie and mommy to 7 little kids (ages 4 to 11). . DX with Fibromyalgia, 1998 DX with MCS (Multiple Chemical Sensitivity), June 2008 DX with Food Allergies, wheat, sesame, fresh pineapple . |
|||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-18-2008) |
07-18-2008, 11:14 AM | #4 | |||
|
||||
Senior Member
|
So sorry to hear that, I new they were considering it but hadn't heard anything so I thought they had ruled it out!
__________________
Renee One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered. |
|||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-18-2008) |
07-18-2008, 05:22 PM | #5 | |||
|
||||
Elder Member
|
Sandy you know you, jim, boys and mom are deep in debs and my prayers and thoughts,
so what is the neuro thinking perhaps the similar SX's might of been side effects from the surgery? and even though she tested + hopefully the MG isnt active? I am not sure if MG is like MS flare up and down or constant. Saying an extra prayer for strength for you hang in there friend
__________________
. History doesn't repeat itself, but it does rhyme.............................Mark Twain . ....... . ... . |
|||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-18-2008) |
07-18-2008, 06:07 PM | #6 | |||
|
||||
Fabulous Belizean Member
|
now I know how people feel when I say "Multiple Sclerosis"
like, I've *heard* of MG, but didn't know jack-squat about it. so I looked it up. http://en.wikipedia.org/wiki/Myasthenia_gravis my thoughts and prayers are with you and your mom, Sandy. I know they say God doesn't give us more than we can handle, but sometimes... it seems unbelievable just how much gets piled on our plates. hugs, and hopes that it stays relatively benign.
__________________
And the trouble is... if you don't risk anything, you risk even more. - Erica Jong |
|||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-18-2008), weegot5kiz (07-20-2008) |
07-18-2008, 06:49 PM | #7 | |||
|
||||
Wise Elder
|
Frank, I really don't know all there is to know yet but it seems to go in and out of remission. Honestly, I am not well versed in this disease at all and hope some others who are come in and shed some light.
Kay, I know what you mean. I too was wondering when they first said it could be MG about a month or so ago. :-(
__________________
. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
|||
Reply With Quote |
07-18-2008, 07:57 PM | #8 | ||
|
|||
Magnate
|
Keeping your mom in my prayers Sandy.
__________________
sox . . |
||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-19-2008) |
07-18-2008, 10:33 PM | #9 | |||
|
||||
Member
|
Hi Sandy
how very frustrating for your Mum and you. I had vaugue symptoms for a while, then full blown symptoms, so no I'm not in the catagory you're looking for. But be aware that symptoms can (and they vary hugely from person to person) go from not much to quite symptomatic quite quickly, well they did in my case. I hope things don't get too bad for your Mum take care redtail |
|||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-19-2008) |
07-18-2008, 10:38 PM | #10 | ||
|
|||
Junior Member
|
Sorry to hear about your mom.
I guess that being that your Mom is fairly stable right now may be the reason the doctor is holding off with treatment. I would say the most important thing is to have a good neuro, really good. One who is well versed in Myasthenia. There are some good links above to start reading. With M.G. everyone is different. I would ask the doc what he intends to do, what further testing has your Mom had, or going to have. Be familiar with the list of drugs to avoid, there are many. Heat can make you worse, you cannot overdue. A good neuromuscular doc can help sort out what is M.G etc. Did she have a chest Cat scan. Usually contast is contraindicated. As with M.G. the biggies to look out for are any breathing and swallowing problems. I hope your Mom's case stays mild and limited. M.G. is tricky though and just keep you eye out for other issues. I have had years of no meds{not diagnosed} and then went through other treatments, some aggressive. Right now I take high doses of Mestinon, trouble with other treatments and am pretty limited. Everyone is different. This is just a start for you. I am sure others will offer help, the board is a bit slow. I hope this helps and your Mom. I would say though at some point, treatment is started. Sometimes one also weighs the risk of the treatment also. ps try to avoid crowds, sick, colds coughs etc. M.G. is made worse by many things. I hope this helps, if you would like more info, links, we can help out too. Best to your Mom and family. Last edited by GUMBY; 07-18-2008 at 10:44 PM. Reason: spelling |
||
Reply With Quote |
"Thanks for this!" says: | SandyC (07-19-2008) |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
PD - yesterday and today | Parkinson's Disease | |||
Neurologist app. yesterday | Peripheral Neuropathy | |||
Yesterday was Sooooo Bad!! | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
Saw therapist yesterday | Bipolar Disorder | |||
Yesterday .......... | Bipolar Disorder |