Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 06-10-2016, 04:40 PM #1
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

I know that many people love the NHS, but I keep hearing such bad stories!

Any infection can make MG worse. I wonder if your daughter might have some kind of immunodeficiency: IgA, IgG, IgE, IgM, and IgD. I know that kids get sick more often, but it sounds as though your daughter does more often.

I hope you will get her to the hospital right away if she can't move well, breathe well, or swallow, or is generally overall weak.

I hope both of you will be tested for B12 and D deficiencies. They're very common for people with autoimmune diseases. Watch out for any thyroid symptoms as well.

I hope your daughter takes naps after school. That would really help her.

Going to a pulmonologist is useful, too. They can do a baseline reading for breathing (MIP and MEP are specific to neuromuscular diseases).

Does she use two puffs twice a day while having a lung infection? I need to do that, which is written on my Flovent inhaler prescription. You might want to ask the prescribing doctor about that.

Washing hands a lot helps while in school too, to stop those germs from spreading! Or bringing a product such as Purell hand sanitizer to school.

I hope she will get some help soon!!!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 06-11-2016, 03:04 AM #2
vickypanda vickypanda is offline
Junior Member
 
Join Date: Jun 2016
Location: East Yorkshire
Posts: 23
5 yr Member
vickypanda vickypanda is offline
Junior Member
 
Join Date: Jun 2016
Location: East Yorkshire
Posts: 23
5 yr Member
Default

Quote:
Originally Posted by AnnieB3 View Post
I know that many people love the NHS, but I keep hearing such bad stories!

Any infection can make MG worse. I wonder if your daughter might have some kind of immunodeficiency: IgA, IgG, IgE, IgM, and IgD. I know that kids get sick more often, but it sounds as though your daughter does more often.

I hope you will get her to the hospital right away if she can't move well, breathe well, or swallow, or is generally overall weak.

I hope both of you will be tested for B12 and D deficiencies. They're very common for people with autoimmune diseases. Watch out for any thyroid symptoms as well.

I hope your daughter takes naps after school. That would really help her.

Going to a pulmonologist is useful, too. They can do a baseline reading for breathing (MIP and MEP are specific to neuromuscular diseases).

Does she use two puffs twice a day while having a lung infection? I need to do that, which is written on my Flovent inhaler prescription. You might want to ask the prescribing doctor about that.

Washing hands a lot helps while in school too, to stop those germs from spreading! Or bringing a product such as Purell hand sanitizer to school.

I hope she will get some help soon!!!

Annie
Unfortunately she gets far to much homework to do naps after school which would be good. Yes she doubles up on her inhaler when she is chesty and takes salbutamol when she moves around school. She takes a hand sanitizer to school and has done for many years. I will be asking the dr about doing further testing depending on his view on the neurologist and will be asking if she can be referred to see a different one if there is a different one. The NHS is under staffed and very poorly run hospitals are not as clean as they should be, hand sanitizer I is needed there too! there aren't enough Drs or nurses and usually the wait to see a specialist is around 6 months!! And then you get one that hasn't a clue about myasthenia gravis which is typical. My neurologist said that any positive blood test means she has it so I will talk to her too but I won't see her for about 3 months now. Thank you for your advice
vickypanda is offline   Reply With QuoteReply With Quote
Reply

Tags
drooping eyelid, gravis, myasthenia, ptosis


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Is this a symptom of TOS? gruvingal Thoracic Outlet Syndrome 4 06-19-2014 08:04 PM
New symptom, anyone else ever had this Sham Peripheral Neuropathy 9 12-04-2013 04:54 PM
is this a MS symptom? Synnove Multiple Sclerosis 5 02-07-2013 08:08 PM
my first MG symptom Stellatum Myasthenia Gravis 14 11-23-2011 02:27 PM
Can I have RSD only one symptom? bent98 Reflex Sympathetic Dystrophy (RSD and CRPS) 14 11-09-2011 01:58 PM


All times are GMT -5. The time now is 06:26 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is 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.