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


advertisement
Reply
 
Thread Tools Display Modes
Old 08-22-2016, 12:49 AM #1
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
Default Worsening symptoms

I am double seronegative, diagnosed in 2013. I had been stable on Cellcept and Mestinon for 2 years. I was on an Alaska cruise in May of this year and was exposed to highly toxic marine paint. I had respiratory issues and extreme muscle weakness. I avoided intubation but was nearly airlifted off the ship. I had to use a wheelchair for the last 5 days of the cruise.

After that I continued to be weaker than before the cruise and started having other strange things pop up.
I have had 2 instances of unexplained angioedema(swelling) of my eyes, face and mouth. Also bouts of tachycardia lasting a few minutes to 3 hours.

I was recently hospitalized for the tachycardia and admitted to ICU for observation due to very poor pulmonary function tests in the ER. I was also having difficulty swallowing and a video flouroscopy showed slow epiglotis movement and pooling of food in my pharynx. I am now on metatoporol to control the tachycardia and have a referral to an allergist. Several doctors have suggested a thymectomy after a new study came out showing improvement in non-thymoma MG patients. The electrophysiology cardiologist thinks it may also fix the heart electrical issues. I am still trying to work it all out with my many doctors.

This change in my health has happened so fast, I don't know what to think. The metoprolol makes me weaker and I am now choking on my saliva at night.
Has anyone else had a major worsening of symptoms after a chemical exposure?
sandy56 is offline   Reply With QuoteReply With Quote

advertisement
Old 08-24-2016, 08:14 PM #2
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
Default

I am am being tested for complement C deficiency and Mast cell disorders. I don't know what all that means.
My allergist says the paint exposure and angioedema are not related.

I am feeling better overall. But my swallowing is still compromised. I am back on prednisone and may need Plex. Can't wait for summer to end!
sandy56 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (09-05-2016)
Old 08-26-2016, 05:11 PM #3
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

Sandy, I'm sorry you had that reaction. A causal relationship is really hard to determine. Do you know the brand of the paint and what type it was?

You were out in the sun, correct? That alone can tank MG. There is also a sun-lupus connection and lupus patients can get angioedema. Have you ever been checked for lupus?

Metoprolol: Uses, Dosage, Side Effects - Drugs.com

Beta blockers are relatively contraindicated in MG.

Did they determine the cause of tachycardia? Was it MG? Or did they just throw a drug at it?

When MG is worse, the heart beats faster to get us more oxygen. When that fails, the heart rate can go higher and oxygen saturation drops. Did anyone check your arterial blood gases?! O2?

You might also be dehydrated.

You may need to consult with an endocrinologist as well.

I hope you will seek out help in an ER if you continue to be so bad.

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ErinBear (08-27-2016), sandy56 (09-01-2016)
Old 09-01-2016, 09:47 PM #4
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
Default

Hi Annie
The paint I was exposed to is a Marine paint that has xylene, naptha, mineral spirits and other chemicals in it. I saw an allergist who thinks that there could be a possible connection between the paint exposure and my worsening condition. He did testing for complement C immunodeficiency and mast cell disease. Nothing definitive yet. I have to get my blood tested for Tryptase within fours hours of my next angioedema episode. I now carry an epipen, just in case.

My heart rate was spiking up to the 150s while I was monitored in the hospital. No blood gases were done.
The Cardiologist says he can use the monitor information in place of a holter monitor to determine what is going on with my heart. The working diagnosis is SVT. I could not take the metoprolol as it made me too weak. Next, they are having me try low dose Cardizem. Fingers crossed

I am also being evaluated by a gastroenterologist for my continued dysphasia.

I have been checked for Lupus many times in the past. My blood work is always normal although I have had many other signs and symptoms over the years.

I am feeling better on the prednisone (hate it) and have avoided Plex so far. It has been a real struggle to keep a positive attitude through these health challenges. I have always had a pretty well controlled disease course until this summer. I have a greater appreciation and understanding for all my fellow MGers these days.
The support here is awesome. Friends and family really don't get it.
Thanks
Sandy
sandy56 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (09-05-2016)
Old 09-04-2016, 08:21 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

Sandy, Did they do a D-dimer to check for a clot? Has anyone done any tests for clotting disorders? APS (antiphospholipid antibody syndrome) is common for those with AIs.

It can be hard for anyone to understand a disease who doesn't have it. You could ask them if they could run their car without gas. Our muscles can't run well because we don't get enough "muscle gas." Maybe that would help.

I don't think healthy people want to even consider what it means to be ill!

Whatever is going on, I hope they'll be thorough.


Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
sandy56 (09-05-2016)
Old 09-05-2016, 10:54 AM #6
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
Mad Exhausted

I don't think the doctors have a clue what to do with me. No clotting tests as far as I know. I will look at APS information. I really think I may have POTS instead of SVT. The electrophysiology cardiologist just wants to throw drugs at me instead of doing any testing. Ugh

I still have a Gastroenterology appt to go to for further evaluation of my dysphagia. The Allergist thinks I have some kind of Mast cell disorder. Further evaluation is needed for that.

Annie, what do you think about the new Thymectomy study?

Thanks for listening. This disease is exhausting.
Sandy
sandy56 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (09-05-2016)
Old 09-05-2016, 06:26 PM #7
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

Do you have a link for the new thymectomy study? Is it on PubMed? MGFA? I've been super busy lately (which means super weak) and haven't had time to do any research.

Dysphagia is a symptom of MG. Why are you seeing a gastro about that? Sorry, but unless you are having GI issues, how are they going to help you with a neuromuscular one? Or has someone said that they think the dysphagia has another cause?

Yes, MG is exhausting. There are days when it is too much to deal with. But most days are okay.

If you haven't had your thyroid checked lately, that would be a good idea as well. People with Graves have a high heart rate.

Graves' disease Symptoms - Mayo Clinic

Please don't become a medical mistake. Make sure they thoroughly assess what is going on with you, okay? Drugs are useful, but if they don't have a "why," how can they appropriately treat what is going on? No, you don't want to go around with a high heart rate, either.

MG that is not treated sufficiently can also cause a high heart rate, but not usually high unless one is doing an activity. I mean, not high while merely sitting still.

Let's hope they can figure this out soon!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ErinBear (09-05-2016)
Old 10-11-2016, 08:27 AM #8
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
Default

I am starting 4 days of IVIG today. This is my first time. Thanks to all for the help and concern. I am feeling hopeful.
sandy56 is offline   Reply With QuoteReply With Quote
Old 10-11-2016, 09:02 AM #9
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
Default

Dear Sandy,

I hope the IVIG treatment really helps. I just did 4 days of IVIG treatment last week also, and it really helped me. I'm sending lots of good thoughts your way!

Take care,
Erin
ErinBear is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
sandy56 (10-11-2016)
Old 10-11-2016, 10:53 PM #10
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

Let us know how it goes, Sandy! Don't forget to premedicate with acetaminophen and Benadryl. It helps if they run the infusion slow. Hydrate a lot, before, during and afterward.

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
sandy56 (10-12-2016)
Reply

Tags
cruise, doctors, issues, tachycardia, weaker

Thread Tools
Display Modes

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
Need help!! Worsening symptoms JBuckl Traumatic Brain Injury and Post Concussion Syndrome 5 06-25-2014 06:10 PM
New and Worsening Symptoms Lin_Z Myasthenia Gravis 4 12-11-2013 11:53 PM
worsening of symptoms susanj Myasthenia Gravis 5 04-18-2013 11:33 AM
Worsening TBI symptoms nate090 Traumatic Brain Injury and Post Concussion Syndrome 2 10-24-2012 05:33 PM
Worsening symptoms billy027 Thoracic Outlet Syndrome 10 03-12-2010 07:12 AM


All times are GMT -5. The time now is 04:39 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.