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MEGSTURN's Photo MEGSTURN Posts: 461
4/27/13 5:46 P

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thanks ladies....
my sister and family think I am being "impatient"...and I just need to wait....
they really don't get it...
we have had two other serious illnesses the last few years...and I think they are just burnt out on taking on another one....

the dr. called....at 6:30 pm....
I was gone...can you believe it...I waited all day for the call by the phone....
who would think he would call at that time on a Friday evening???

so...
I have a list of the meds you can't take now....
found those online....
I tried to give it to my PCP and she really didn't want it....amazing!
my sister tells me I am making it "more important" than it really is....
she has an older lady who she cares for that has it...and that lady has told her that it is really nothing and life is normal if on meds....
well maybe if you are 86 and everyone does everything for you...
I have to work....

so...
I'll check out the websites and see my options....
I do think I need to make some decisions here and not just let it "go"....

both my eyelids are drooping currently....
my speech does slur from time to time....
and the exhaustion level even on mestinon and prednisone is undescribable....

ok...ladies off to rest....Meg

no gain....no loss on the weight ...amazing with the prednisone....
annoying too....I should be losing with what I am eating...


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SHARON2014's Photo SHARON2014 Posts: 2,736
4/27/13 3:33 P

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Hi, my DH has had ups and downs since his diagnosis January 2012. He has had several sinus infections and a bout with pneumonia and then prostate infection. Each time the infection causes the MG to worsen. He was recently diagnosed with asthma and sleep apnea.

He initially had double vision, fatigue in the arms and legs and slurred speech. The Mestinon worked very well at first but the past few months he has had double vision and one droopy eyelid. The neuro gave him a prescription for Prednisone but he did not take it - decided to double up on his Mestinon and it is ok. Since he is retired, he tends to undertreat the MG as he can rest when he needs to. He takes 2 in the morning and afternoon and 1 at night.

Meg - I agree that you need a new neurologist -- you shouldn't have to wait so long and should be provided with a list of contraindicated drugs- where do you live? If you check with your state MG chapter they can give you some recommendations. Check out the MG website, you can request a packet to be mailed to you. myasthenia.org/Home.aspx There is also an emergency card for your wallet that you can download from that site. I would be glad to email you a list of the drugs that are contraindicated if you will send me your email in a Spark Mail message.

Keep in touch.

SharonLee
Michigan

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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (100,178)
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4/26/13 10:55 P

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When it comes to exercise listen to your body. Don't push yourself. I've had to cut back on a lot of my activities because of my balance issues.

When it comes to going on antibiotics for any reason make sure you consult with your neurologist first because many MG patients can't do certain antibiotics or it will make their symptoms much worst.

there was a time when i ahd to physically keep my eyes open with my fingers but that's in the past now.



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MEGSTURN's Photo MEGSTURN Posts: 461
4/26/13 10:02 P

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thanks Debbieanne.....

I just got the name of another Dr. today.....
I have tried to reach my current one for 3 days....phone tag...
unable to reach him directly ever....
and...
another Dr. in their group passed away last week the nurse told me....so they are taking all of his patients too....

so...might be a time to look for another one...

yes...I thought the meds should keep the eyes open from dose to dose...but it does not always....
the prednisone.....he said it is essential in my case....
that he would lower the dose to a maintenance dose...but he didn't on the last appointment...and now I cannot seem to get in for 3 more months...

I have to check blood sugars twice a week.....so far it is fine....
I get a lot of exercise...so probably that helps...

ok...off to rest..long day here....Meg

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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (100,178)
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4/25/13 7:42 P

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Hi Meg

I hope you get a really good Neurologist/MG specialist who really knows his stuff. I'm sorry you had such a rough start. My feet sometimes shuffle and kinda fumble around in a goofy way. Needless to say my balance sucks but that's to the fact my ears are bad and it's nothing new. Mestinon should be keeping your eyes open until the next dose. Prednisone... My Dr. is doing everything in his power to keep me away from that evil drug. It causes weight gain plus I've got diabetes. Even if you are tired and weak please don't give up on exercise. Do a little strength training like with resistance bands or dumbells. It will keep you stronger. Be around motivating/encouraging/loving people. You will need all the support you can get this is a tricky, sneaky disease. You might also look into getting IVig because it will be a life saver and keep you off a ventilator. HUGZ



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MEGSTURN's Photo MEGSTURN Posts: 461
4/25/13 7:24 P

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hey hi everyone!

I was diagnosed last october....after going to various doctors for 2 years with no help!
finally an eye doctor caught it....I was so exhausted all the time I had decided to quit my job....I just cried all the time!
However.....started on mestinon....4X a day...that helped...then on prednisone for 15 weeks now....was supposed to lower dosage at 12 weeks...but I got sick and went on an antibiotic that my reg. doctor gave me.....which messed me all up again....
myasthenia doctor was very upset....however...he never told me I should not take them...and I had tried not to web search too much thinking it would be better not to....
well since then I am looking for all the info I can find!

of late....now both eyes are drooping....
I fell....(found out that is not uncommon for myasthenia gravis folk)...thought I tripped on something but went back and found the ground level.....weird...
sprained my ankle...
and my vision is giving me fits....keeps changing....sometimes I can read ....sometimes I can't...
and my handwriting comes and goes....
so....
its one odd thing to have for sure....
I find it odd that my eyes are drooping even though I am taking the meds....
finally decided to call the dr....but missed his call this afternoon...

I got mad over the prednisone weight gain...and I have lost 11....but I have to fight for every pound...its not coming off very easy at all!
and since muscle repetition is what makes the myasthenia worse....I am having trouble finding exercise that I want to continue doing....
so...
there it is...

taking the rest of the evening as a nuture evening.....long bath....nails...pedicure...and maybe some reading or drawing later....

so off to enjoy.....any help welcome....and support needed....
my family just does not get it....
Meg

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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (100,178)
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4/25/13 3:36 P

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Lee, has your husbands symptoms progressed to other areas of his body? Would you like to share what he is going through now?

To date my symptoms remain in my eyes only. the first week of January I started on an immunosuppresant called CellCept. Along with the IVig (3 days every month) and Mestinon 60 mg 3 tymes a day I continue to be symptom free at this time. In July when I see my neurologist homefully we will be taking me off of some of these drugs.

I'm getting ready to ahve Cataract surgery on the first of may and the 15th of ay.



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SHARON2014's Photo SHARON2014 Posts: 2,736
4/25/13 3:23 P

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Hi, welcome to all the new members. I do not have MG but my DH was diagnosed last year. We have gotten most of our resources from the MG website and various forums on the web - I believe links to these are posted at the beginning of this thread. We have found support groups to be a great help - just hearing experiences of others is helpful although each person responds very differently. There is an active forum on Facebook called Myasthenia can't stop me! - you have to request to join from the moderator.

SharonLee
Michigan

Fuchsia Beauties Inc. (FBI)
Leader: Physical Health
BLC 25
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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (100,178)
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4/25/13 3:14 P

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Good morning. I'd like to welcome our new members,. I've been inactive in this team due to lack of chatting but i am here. Feel free to introduce yourself.



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TWEETYKC00's Photo TWEETYKC00 Posts: 84,099
4/24/13 5:39 A

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I did post some info before. I don't actually have this, I am here for support. Our team leader Debbie Anne does have it. It can be hard to find good information all in one place as it seems that not everyone has many answers to many things. I hope you can find something to help you.

Kristy

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MEGSTURN's Photo MEGSTURN Posts: 461
4/23/13 9:01 P

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hey tweety....

aren't you the one that posted the info earlier???

do you have myasthenia???

I keep learning as I go....can't seem to find one spot with all the info....
more or less am collecting from various places...
thanks for answering anyway...

Meg

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TWEETYKC00's Photo TWEETYKC00 Posts: 84,099
4/23/13 5:37 A

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I am here, but I am sorry to say I don't have much information about this disease.

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MEGSTURN's Photo MEGSTURN Posts: 461
4/22/13 10:04 P

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hey....is anybody active here???

looking for someone to relate to about this weird disease!
I looked at the links below....
and mine is about as different as they are!

let me know if anyone is here....Meg

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PICKIE98's Photo PICKIE98 SparkPoints: (294,025)
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4/3/13 3:02 P

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Thanks ph!

SIX YEARS SPARKING!!

Lost 66 pounds!



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TWEETYKC00's Photo TWEETYKC00 Posts: 84,099
3/5/12 5:06 P

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Welcome to the team! We are glad to have you here and we want to be here for help and support whenever we can.

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3/5/12 9:47 A

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Those are good links. I was diagnosed last year (Dec) after 6 months of tests and uncertainty from my general doctor, eye specialists, and neurologists. I found the site www.mgfa.org that is full of information including the listing of local support groups that may be in your local area. I belong to one that's near my home in Columbia, MD. The local support group is one of the best sources of information and inspiration available to me. Some of the members have had this disease for several years and have been very helpful in suggesting treatment options that I can discuss with my Dr.

TWEETYKC00's Photo TWEETYKC00 Posts: 84,099
11/16/11 6:55 P

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