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


advertisement
Reply
 
Thread Tools Display Modes
Old 03-04-2014, 11:45 PM #1
pdsmith pdsmith is offline
Junior Member
 
Join Date: Dec 2013
Posts: 14
10 yr Member
pdsmith pdsmith is offline
Junior Member
 
Join Date: Dec 2013
Posts: 14
10 yr Member
Default Relapse

Fairly new to Mg. Diagnosed around this past Thanksgiving. Any how I finally got my eye functioning real close to normal by using 4x 60 Mestinon daily and 3 weeks ago I had a Bakers Cyst rupture in my Knee. After a week and a half of bruising and swelling in my leg I began to notice my eye start drooping again and this time my speech is being affected as well. My question is "Does other illnesses affect MG or does the does the MG keep getting worse and I have to keep re-adjusting my Mestinon?" BTW my leg is pretty much healed u now so can I expect the Mestinon to start working on my eye and speech again soon?
pdsmith is offline   Reply With QuoteReply With Quote

advertisement
Old 03-05-2014, 04:09 AM #2
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Default

A similar thing happened to me - I was finally diagnosed in September last year and put on 60mg 4 x per day of mestinon and it was great! I was able to build up my activity level and was finally able to do more than just barely make it through a morning at work and spend the rest of the time completely worn out!! Then, in December we had a trip to Disney booked which we had planned a year earlier and those 4 little days have thrown everything!! I have not been able to get back on an even keel since!! My mestinon is now less effective and it's effects more intermittent and unreliable, My dose was increased to 90mg 4/5 x per day but I spent 3 weeks getting rapidly worse and having chest heaviness/pressure (especially when standing) on that dose so I have reduced it back to the 60mg again while I wait to see my Neuro again....which isn't for another 8 weeks!

I'm afraid I don't know the answer to your question as to whether this means the illness is getting worse or I wondered whether we can get used to the mestinon (some quicker than others in our case!) and the effects reduce when that happens?! I know other illnesses can put our immune system to work which in turn is not good for MG and I did speak to my Neuro's registrar when I was really worried about my breathing last week and she said I shouldn't blame the trip to Disney, it's my immune system at fault and overdoing things is one of the worst triggers for Myasthenia so perhaps your knee put extra strain on your body as the trip did for me and that's why we're in this situation?

I look forward to seeing what others say here and wish you all the best - I hope you are able to feel better very soon
Unsure81 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (03-05-2014)
Old 03-05-2014, 04:36 AM #3
Bipedal Primate's Avatar
Bipedal Primate Bipedal Primate is offline
Junior Member
 
Join Date: Feb 2014
Posts: 32
10 yr Member
Bipedal Primate Bipedal Primate is offline
Junior Member
Bipedal Primate's Avatar
 
Join Date: Feb 2014
Posts: 32
10 yr Member
Default

I was just diagnosed in January 2014. So like you, I am also new to taking Mestinon.

From what I have read, Myasthenia Gravis affects every individual differently. So, it is difficult to know if a particular illness, medication, stress, etc. etc. etc. is the culprit for worsening symptoms. This makes it really hard for doctors and people with Myasthenia Gravis to know which treatment plan and which medicines will work best.

Everyone who takes Mestinon has to adjust their dose to their own needs. Some people vary their dose daily, depending on how they are doing that particular day. While, some people do better when they take the exact same amount every day at the exact same time.

Some people can't take Mestinon, even at small doses, because it makes their condition worse!

It has been frustrating trying to figure out if the amount of Mestinon I am taking is making my MG worse or if I am just getting worse. And if I am just naturally getting worse then I might need to take more Mestinon. Talk about confusing!
Bipedal Primate is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (03-05-2014), pdsmith (03-05-2014), southblues (03-05-2014)
Old 03-05-2014, 12:07 PM #4
Juanitad's Avatar
Juanitad Juanitad is offline
Member
 
Join Date: May 2009
Location: Eastern TN
Posts: 314
10 yr Member
Juanitad Juanitad is offline
Member
Juanitad's Avatar
 
Join Date: May 2009
Location: Eastern TN
Posts: 314
10 yr Member
Default

Any time you have a problem that causes your immune system to go into high gear (such as a illness or any type of infection), your mg will get worse. Remember that mg is caused because your immune system malfunctions and is over reacting. Many of us take immune suppressants to keep our immune systems in lower gear so it doesn't manufacture as many t-cells to attack the receptors on the muscles.

It may get back to where you were over time - but that's the key thing...it takes time. I know, I hate that too.

Good luck!
Juanitad is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (03-05-2014), pdsmith (03-05-2014), southblues (03-05-2014)
Old 03-05-2014, 06:09 PM #5
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

Yes, any stress on the body, as Juanitad said, can adversely affect MG. So many things can.

Examples of things that can affect MG: Stress, not enough sleep, not enough protein in the diet, lack of B12 (we need it to make acetylcholine), extremes of heat and cold, too much potassium or magnesium, nightshade foods (potato, tomato, peppers, nicotine, eggplant, etc.) and caffeine are cholinesterase inhibitors like Mestinon and MIGHT make you better or worse, infections (viral or bacterial), surgery, crying, not resting enough in between activities, too much nonstop activity, not enough hydration (water intake), an overactive or underactive thyroid or other endocrine problems, allergies, food sensitivities, and so many other things that might contribute to an imbalance in your immune system.

Mestinon doesn't necessarily "fix" facial and speech issues. If you are not getting better, you should make a call to your neuro. You might need to consider additional medications that address the immune issue (antibodies attacking your tissues). Although, what you do is your choice!

MGers need to balance activity with rest. Mestinon only goes so far. Even if you're on other drugs, having MG is still about being sensible. It sucks to have to reduce activities or alternate them with rest but it's a smart thing to do.

The more you do, as Unsure said, can push your MG too far to the more severe state. The worse MG gets, the longer it takes to recover. It's best to maintain an even strain.

I really think you should call your doctor. Ask him/her about the Mestinon dose amount and the spacing between doses. Maybe you guys can figure something out that works better for you.

I hope you feel better soon. Keep asking questions. This is a very unpredictable and rather frustrating disease!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bipedal Primate (03-06-2014), pdsmith (03-05-2014), rach73 (03-15-2014), southblues (03-05-2014)
Old 03-05-2014, 08:11 PM #6
pdsmith pdsmith is offline
Junior Member
 
Join Date: Dec 2013
Posts: 14
10 yr Member
pdsmith pdsmith is offline
Junior Member
 
Join Date: Dec 2013
Posts: 14
10 yr Member
Default

Yeah I have been seeing the neuro each month until last month. I go again on March 19th. I went from 2 60mg dosages a day to 3 and then 4 where I am at now. Besides the Baker Cyst incident almost 4 weeks ago I have been oncall for work the past 3 weeks which also puts on added stress. I go offcall on Friday. Now that the swelling and bruising is almost gone I am hoping to have a nice quiet weekend and hopefully the Mestinon kicks in. If it's not better by Monday, I'll try bumping up to a 5th pill daily. I am still in the adjusting period to see what works best for me. If that doesn't work I'll drop back down to 3 pills as that seemed to work fairly well. I was only on 4 pills daily for 3 weeks before I noticed the worsening but I still think it was the Bakers Cyst problem that cause the relapse. I told my neuro already that I will refuse predisone already as I have been on that before for another issue 30 years ago and I don't need the added weight gain it gave me before.
pdsmith is offline   Reply With QuoteReply With Quote
Reply


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
possible relapse mykxt202 Traumatic Brain Injury and Post Concussion Syndrome 0 09-16-2011 01:04 PM
PCS relapse??? jbird1722 Traumatic Brain Injury and Post Concussion Syndrome 5 07-07-2011 11:49 AM
PCS relapse oaklandrichie Traumatic Brain Injury and Post Concussion Syndrome 1 03-26-2011 10:19 PM
Is it Relapse?? eponagirl Traumatic Brain Injury and Post Concussion Syndrome 9 08-12-2010 03:51 AM
MG Relapse? AmyTrinidad Myasthenia Gravis 8 05-16-2009 10:36 AM


All times are GMT -5. The time now is 02:10 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.