Newbie -- Just diagnosed July 2009
 

Hi all,

I'm so glad I found this forum. I was just diagnosed with MG this month. At this point my sypmtoms are minor (only ocular) compared to a lot of you, and for that I am thankful. My diagnosis was swift and actually I had found out about MG by doing a google search for droopy eyelid + double vision before my first doctor's appointment.

My story / background:

Female, 56 (well almost 57) -- aren't I old to be getting this?
Homemaker (took "early" retirement 8 years ago after working in office environment for 30 years)

First noticed "eye" problems on July 2 while driving to do some shopping. Had hard time focusing and almost called my husband to come get me, but I didn't. While I was in the first store, I felt like I was a bit drunk and everything around me just seemed weird. I just thought I had overdone it on the computer. I had just been to the optometrist for an eye exam the month before and everything was OK. Even did a trial of the multi-focal contact lenses, but didn't like them.

Over the weekend the vision didn't improve and I noticed that my right eyelid would droop and double vision was definitely there. I called to get a re-exam with the optometrist which was scheduled for 2 days later. That morning before the appointment I had found MG on my google search and thought "that's me." I printed out the fact sheet for occular MG and put it in my purse. My exam showed no problems with my eyesight (when I could focus), but she wanted me to see a neuro opthamologist. I told her I was scheduled to leave on an 18-day vacation that Saturday (2 Alaska cruises). She got me an appointment for that Friday (one day to spare). I asked her if it could be MG and she didn't say yes or no.

At the neuro opthamologist appt. he said he thought it was MG and ordered a blood test for acetycholine receptor antibody. He gave me a recommendation for a neurology group to see for a neuro evaluation. He hedged on whether or not I should take my vacation. I told him we had trip insurance and that if we cancelled he would be required to fill out a physician's statement for us to get reimbursed. He said no problem. If we were only going to be gone a week and be land-based I probably would have gone, but to be on a cruise ship for 14 days with stops in small Alaska cities, I just found that too unsettling. So we dediced to cancel.:(

The following week I got the results for the blood test and they were positive. I still had almost a week before my visit with the neurologist, but at least there was no question.

Met with the neurologist earlier this week and he has put me on Prednisone 40mg (4 10mg tablets) and Mestinon 60mg 3 times a day. I started on them 4 days ago. The first day I took them I noticed a vast improvement later that day in both my double vision and eyelid droop. A miracle I thought! I do notice that my eyelids twitch from time to time. I drove yesterday for the first time in 2 weeks -- just about 3 miles to church and back. Still don't feel comfortable driving longer distances, esepcially with lots of traffic.

The neuro also ordered a CT scan for thymus and blood test for thryroid (THS #4 I believe). I had the CT scan this past Friday and should have results in a day or 2. Keeping my fingers crossed there is no problem with the thymus.

Sorry this is so long-winded, but it's just good to get it all out. I have been keeping a daily diary with symptoms, doctors' appointments, etc., so that I don't have to rely on my memory.

I haven't read this entire forum yet, but feel like I already know some of you. Some of you are dealing with so much more than I can even imagine, you are my heroes.

Kathy

Kathy,
Welcome to the best MG site on the web. You are not to old to get MG. I am glad that you were DXed so fast. most of us took years, but then 18 years ago they just didn't know much about MG. As for the Thymus gland, I did not have a thymoma but they removed it anyway and I went into a full medication free remission for 17 years. {My MG is back now} My MG is mostly in the eyes and arms. when your vision starts acting up, tilting your head helps. You will meet some wonderful peopl here. :)

Kathy,
I agree, you were lucky to be diagnosed that fast. I was diagnosed pretty fast but with questions....my tests have been negative..but clinical symptoms have be dead on the mark! The neuropathy in my legs have thrown everyone for a loop...don't have a clue as to why this has occurred at the same time. Mestinon is good stuff!

Since going to Maryland for a second opinion, I have started (on the advice of the doc)...a daily journal of graphing my fatigue as well as graphing the times of my dosages of Mestinon. This has helped me to keep track as well. I have found a great website Livestrong.com that I can do a online food intake journal as well. I can graph my weigh and my progress with that as well.

I am determined to try to understand this disease better and improve my overall health at the same time!:rolleyes:.....The diet part is really hard....:Sigh:...I have been using caffiene to combat the tiredness....and now I am really feeling the fatigue part of MG...I am 9 days completely caffiene-free. .Honest to God, I was drinking about 6-8 sodas a day...high in sugar and high in caffiene just to make it through each day!

Hi Kathy,

Welcome to the group! I too agree you were diagnosed very fast...good for you! It took me 2 years, which is still rather fast compared to many here. I have both ocular & general and had a thymectomy in Nov. 02. I take only mestinon, but may reluctantly starting pred soon...haven't decided yet. The twitching you mentioned is a common side effect of the mestinon. Mention this to your neuro the next time you see or speak with him. Feel free to ask any questions you may have. Everyone here is very supportive and helpful. Take care.;)

Hugs,
Pat

Thanks, Pat, Cricket and Joanmarie for the warm welcome. I almost hesitated posting since my symptoms are so minor compared to others suffering from MG.

A question concerning Mestinon. I'm supposed to take it 3 times a day. I was taking with meals, but noticed my eye was acting up when I got up in the morning (maybe because it had been since dinner the night before when I took my last pill). Yesterday and today I am taking them 8 hours apart to see if things are better in the morning.

I'm beginning to see living with MG is all about seeing what "works" and making adaptations. I had already learned before starting meds that tilting my head when watching TV helped, as well as closing my right eye. Have also found that looking downward such as when cooking, laptop compupter vs. desktop monitor helps a lot.

Kathy

Hey Kathy,

All the things you are learning, we did too. You will learn more as you go along. As far as the mestinon goes. I would call my neuro and let him know what you wrote here. He may increase it by one more a day or prescribe a time release at bed time. Please don't increase it on your own. Too much mestinon will make your symptoms worse. It's good that you take it after a meal. If you have stomach issues it helps a lot. I am so glad you decided to post. Everyone here has varying degrees and symptoms of MG. Always feel free to ask any questions and someone here will be more than happy to answer them. Looking forward to hearing from you more. Take care.;)

Hugs,
Pat

Hi Kathy,
You have to find by yourself what is the best shedule for your Mestinon intake, your neuro is not in your shoes...Vary your intake and observe the results!
I take mine at 9am-1pm-6pm and 11pm, always with some food and beverage, mealtime or not.
Do you know that a special kind of Mestinon does exist, Timespan? It comes in 180 mg tablets which can easily be broken in two, I took half a tablet at 11pm for quite a while, but I do not need it any longer.
Timespan has a slower release rate the the normal Mestinon , it has been designed for passing the night and wake-up periods without too much problem.
Maurice.

Kathy,
Welcome to the finest board on the web for MG. You will find everyone here is very helpful and encouraging. Feel free to ramble, as we all do at one point or another and also vent to us, as we understand the mental side of this disease also. So glad you are on board with us all and look forward to hearing more from you in the future. I was also diagnosed quickly as you were and am blessed that we didn't have to go a long time like some here on the board. Keep us informed and ask all the questions you want. There are many brilliant minds on here to give answers. Take care and remember that rest is important!
Big Hugs to You,
Simon

Kathy Hi !
So glad you got a prompt diagnosis & didn't have to suffer without mestinon, like a lot of us did for an ungodly amount of time ! Welcome !
Mary

Welcome KathyV!
 

Hi Kathy
 

Welcome to this forum. I can only reiterate what others have said!

MG is a learning curve and you will adapt your life around it. Along the way you will find out what you need to adapt to make life easier. Reading through previous posts.....when you have the time and energy is a great way of finding out little hints and tips to help you make it through the day!

This forum is a great place to express your hopes, fears and frustrations and no one will judge you! Because we all have insight into what its like.

They are a great bunch here, welcome onboard!

Love
Rach:grouphug:

Kathy, Welcome. You've gotten some great responses. People here are very supportive.

It's great you got a diagnosis so quickly. For a lot of other people it can take months to years.

I'm sure your neurologist thought it was necessary to start you on Pred. I'm afraid I'm going to be really brutal on it right now. So many doctors do not discuss with their patients ALL of the issues with Pred. Kind of ticks me off since I know people who are seriously suffering from the effects and not being able to get off of it.

Prednisone is not the only drug you can have for MG to help reduce the immune process that is attacking your body. Prednisone is often given every other day, either right away or after a week or two on it. When you take it, you should be taking calcium and vitamin D since Pred can make your bones more brittle (sucks out the calcium). You should also be on an omega 3 supplement. Pred is an antiprostaglandin and you need good prostagandins in your body to fight inflammation, infection, etc. And to keep the gel coating of your stomach intact.

Getting off of Prednisone is really hard. Prednisone basically tells your adrenal glands to take a vacation. And going off of Prednisone means your adrenal glands have got to go back to work. They don't like to do that! You can have an adrenal crisis when trying to go off of it.

Pred also can cause diabetes. Diabetes can cause increased problems with circulation, sores, infections that don't heal (as can the Pred). There are other problems like glaucoma that your doctor should have talked to you about. It should all be in the prescribing info of Pred, but not a lot of patients read their drug info!!!

While your eyelid area may only be involved now, chances are you will have generalized MG. Sorry, but that's how it usually goes. So please take it easy, especially in the heat. Heat makes MG much worse. So does stress, lack of sleep, infections, etc. Anything that stresses out the immune system will make MG worse.

It's good you didn't go on that vacation. Being away from medical care before you have meds might've been dangerous.

Please ask your doctor lots of questions about drugs especially. They are not benign and only you can make a decision - an informed decision - about what to do.

Good luck with figuring all this out. It's a huge learning curve. I hope you only have ocular MG.

Annie

Hi Kathy, Im youre age and was recently diagnosed, and your case sounds exactly like mine. Same exact symptoms, same way, driving somewhere, blurry, then droppy eye lid, double vision, from eye doctor to neuro opth, to neurologist, but I refused any steroids, and so far Ive been lucky on just mestinon, I was taking one tablet am, 1/2 a tablet later one, and 1/2 by the evening, three times a day.
Now I take only 1/4 of tablets every few hours, I tolerate it much better, and dont suffer any stomach problems.
Im glad you found this family, they are a great help and can answer the questions from experience:(:(:(:(:(:((something I wish noone could)

Im sorry you had to cancel your trip, I understand totally, thats what struck me in your story. My wife and I were in the planning stages of going out to the Grand Canyon this fall, but I decided the driving and flying might be a bit much for me at this point.

I wish you nothing but good luck and good health, and as I said, take advantage of this place, there are alot of good people here, helpful, understanding, and all know what you are going through.

Kathy, this also sounds similar to me. Last June, at 40 years, I woke up with a droopy eyelid. Never had any vision problems though. By July I was diagnosed with MG and had a thymectomy in Aug.

We were leaving in a week to Orlando after I was diagnosed. GP wanted us to cancel, neuro said we could go, but sent me with orders for a plasma exchange in case I crashed. We told kids we could reschedule for Christmas break, but we decided to go in July. I'm glad we went, it took my mind off of the upcoming surgery.

I take Mestinon every 4 hours from the time I wake up which varies from day to day. I get 4 - 5 doses a day in. I take it with and without food.

Wow, I just checked in and can't believe all the warm welcomes and words of encouragement. What a warm community. What would we do without the internet.

So far I feel great, no tiredness, and my eyelid and eye seem to be responding to the Pred and Mestinon that I've ony been taking 6 days so far. Don't know if I just haven't had them in my system long enough to start experience some of the more bothersome side effects. No stomach problems. Sometimes get a little "warm" but definitely tolerable. Actually I think I have more energy since I've been eating a lot heathier -- cut way back on salt intake, more fresh veggies and fruits, lean protein, whole grains, etc.

One thing I'm learning for all of you is "one day at a time"

Tomorrow I call the neuro to update him since my appointment last week.

Hi Kathy and welcome.
Its a great place to get support and help, as we've all usually been through it before.
Look forward to seeing you around
Kate

Hi Kathy - - Welcome (sorry to be late - but just got back from wonderful vacation)
You sound like my twin! I was dx'd in June and started Mestinon. Like you, my symptoms are minimal compared to many others on this site. However, I have (and continue) to learn so much form everyone's posts.

Glad Mestinon is working for you - my neuro said on last visit I need to 'discover' the dosage and timing that works best for me. Once you learn your triggers it's easier. Like I can tell dosage is slipping away when I begin to marble mouth or when a particular place in my right arm feels dead heavy (which is what started al this!).

However, I'm allowed to make the adjustments myself only because I have no breathing issues (passed pulmonary function test with flying colors). If breathing were to become involved - -everything would change.

Sounds like you have a good neuro - - what a difference that makes.

Once again, welcome to great site with terrific folks who have tons of info to share with us newbies

Sue

Just Keep Positive
 

I think most of you know my husbands story. Nothing has worked for him. He was even on the Rituxan trial which I think initially made him better but after his last 2 crisises the Ritixan acctually made him worse. He is now on 80 mg pred. every day and mestinon 180 timespan 2xd not to mention the meds he is on because of the prednisone. I have no idea what to do. He is not in control and on the days he feels good he pushes it beyond the limit (obviously when I'm not around). Today I had to call him to say stop what you are doing and relax!!! Perhaps I should have posted this on another thread, but I want you all to know that it could be sooooo much worse.

God Bless all of you
Janet

Welcome!
 

Welcome Kathy!!!! Am glad you found this site and got your diagnosis so quickly!!! They're a great bunch of people here, so feel free to hang around, and say what ever you wish to, ask what ever you want to! As you can see, they all can't wait to welcome you. Looking forward to seeing you around! :D

hi kathy. i'm a noob also, to the forum and the disease. i was diagnosed about 3 mos. ago. my ptosis has been present and treated as other things on and off for at least 2 years.

Hi Kathy
 

My mg started like yours but it took about 8 months for someone to diagnose because I had the bluriness and double vision but no drooping. They did the blood work and I was positive, I am waiting now for a appointment with the MG specialist, I went to one local Neuro, and he has first put me on mestinon which I had some bad effects to and then he changed me to the prednisone., which really didn't help my vision and the side effects outweighed the symptoms. How are you doing on the prednisone? When I go back to specialist I have been waiting 4 months for., I am going to ask him about a prescription for the brand mestinon I have been told that sometimes the generic will give people more side effects.
Glad to hear you are doing so welll, I do was hesitant to post as my symptoms compared to what everyone else is going thru is mild. I started my mg at 57 years old. This is a wonderful board., they have helped me tremendously.
Take care
Nancy

Hi Nancy
 

Nancy,
I can't believe the similarities between us. I'll be 57 in October and live in Ohio (Cincinnati area). What part of Ohio do you live in?

I've only been taking the Prednisone and Mestinon for 9 days now -- both are generic which saves me on the co-pays. Other than I seem to sweat more (which I never really did before), I haven't noticed any side effects. What problems did you have with the Mestinon?

I'm going to a regular neuro -- didn't realize there was a MG specialist. Have you had a CT scan to check your thymus. Mine showed abnormal with a 4cm "growth." Next appointment with the neuro is 8/19 and then I'll see what he wants to do about that.

In the meantime, I'm just about 100% with the vision and feeling fine. Hope I don't jinx myself.:rolleyes:

Have a great weekend.

Kathy

Hi Kathy,
It's good to meet you. This is a wonderful place. Everyone is great and you will get lots of good information. I am 48 and was just diagnosed about 5 months ago so I am still learning too. I have ocular MG and general MG. It took about a year and a half for me to get a diagnosis. I am taking Mestinon during the day, Mestinon Time release at bedtime along with Imuran. My neuro did not want to start me on steroids if we could avoid. However, I do not have double vision all the time. My vision gets blurry when I have been at the computer too long. My left eyelid droops every day at some point. Both eyelids droop at times. I only get double vision when he does the upward gaze test so far. Glad you have found this place, you will really love it.;) Hope you have a good weekend. Take care.
ckitty :D

Kathy., the mestinon gave me so much extra mucous it affected my asthma terrible and all I did was cough and my chest got very congested and also the palms of my hands were hot and my lips itchy. The prednisone made me swelled terrible and then all my lymph nodes swelled. I live in Salem , ohio., close to East Liverpool , The neurologist specializes in MG, and is in youngstown ohio. Take care and keep us informed.
Nancy