[trihead]

Let me start by saying I haven't been formally diagnosed yet but hoping to soon. I am a 31-year old dad living in Minnesota and was able to meet with a neuroophalmologist early on with my symptoms. I am experiencing Droopy Eyelid and double vision but have not experienced many other symptoms yet.

The MRI and CT Scan both came back normal. My antibody bloodwork also came back normal but the Tensilon test showed signs of MG and the 60 MG mestinon I am taking every 5 hours has done wonders so all signs point to MG. (Although I am incredibly twitchy about an hour or two after taking it. Anyone else experience this?) The SFEMG is being scheduled to confirm.

I am looking for any other males (or other young active people) that have been diagnosed. I have run marathons and triathlons for a number of years and while I certainly recognize my 'normal' will be changing, I would love to hear some success stories of those that have been able to remain active with proper treatment.

Thanks again to all in this formal and of the virtual family that I don't yet know but am already thankful for.

- TriHead

Feel free to PM me as well.

[AnnieB3]

Hi, Trihead. Welcome to the forum!

I'm not a male or very young anymore but I thought I'd respond anyway. There are other guys here who can respond more specifically. I can say that I've had MG my entire life and it wasn't until my later 30's that I began having more trouble.

When is your SFEMG? Did they tell you to be off of the Mestinon beforehand? It can interfere with the test. If you can, don't have it 24 hours before it.

Twitching is one of the side effects of the drug. Have you tried a smaller dose to see if you still have those effects? Sometimes doctors start patients out with a smaller dose so that their body can get used to the drug. More is not always better with Mestinon. Sometimes it's the time between doses that needs to be changed too. See the PDF below.

MG is a tough disease to have. There's really no way to predict how you will do with it. There's a big learning curve with this disease. If they decide that you do have it, you'll need to ask as many questions as possible to learn to live well with it. For example, there are certain drugs that MGers can't take.

Did they do the MuSK Antibody test too or just the Acetylcholine Antibody one? Get a copy of any test results! A neuro here kept a positive AChR Antibody test from me and I didn't find out about it until 7 years later. Not kidding.

So, who's doing your SFEMG? The Univ. of MN or Mayo? You should be warm, well-hydrated, off of Mestinon and caffeine products and be fairly "weak." If you have MG and it's in the early stages, you may not test positive on the SFEMG. Event the antibody tests can be negative early on in this disease.

My advice? Take one thing at a time. There will be plenty of time later to think about "what ifs" and physical activity. You can't "push" MG or it will push back. If you get worse, don't hesitate to either call your neurologist (do you have one?) or go to the ER. Yes, MG can get that bad but it's manageable and hard to say who will get worse and who won't.

Keep asking questions. I do live in MN, BTW, and seriously do know all of the neurologists here. If you need the "scoop" on any good ones, let me know. I hope the test goes well.

Annie

[mw3kgt]

27 male. I was running a mile a day and benching 225 or so 7 months ago. Diagnosed within 6 weeks of problems starting. Continued to get much worse after taking mestinon and prednisone, stopped taking everything a few months ago and I'm getting much stronger, probably 60% of what I was.

SFEMG was not able to confirm anything for me, you may be the same if you were and still are very strong.

[Brennan068]

Hi and welcome to the forum

I am male and at 43, I like to think I'm still young yet Although there are days when I certainly don't feel it. Such is the wonderful nature of this condition

Yeah, the mestinon can be a twitchy drug for sure...

As far as "staying active" goes, I've never been anywhere near your level of activity. I've never enjoyed running etc. Although I do enjoy skiing a lot and while a day on the hill can really beat me down, I choose to spend my energy doing it with my daughter. I willingly pay the price over the next day or two if I push it a bit hard. I try to keep my time on the hill to a level that works for me though. When we went on a multi-day ski trip over Christmas break I limited my time on the boards to 6 hours per day maximum.

Your normal will change, yes, but it doesn't mean that you cannot do what you enjoy at this stage. The really important thing is to listen to your body (which is something that I certainly learned the hard way over the past few years since I developed the condition.) If you push it, you will pay for it on the back-end. Think about if you're doing a triathlon and you sprint through the swim, how much do you have left for the bike & run? You have to choose whether or not it is worth it to you.

The recommendation regarding exercise I got from the MG specialist I went to last year was "If you can do it... do it. Your muscles will stop you when they're going to stop you." I think that if I were used to running at the level that you do I'd want to keep it up until and unless the condition started to stop me and then I'd adjust as needed. You don't know at this stage, your MG may not progress beyond your eyelids...

Cheers, and feel free to shout out any questions you have as you're working through the learning process about the condition.

Brian.

[Stellatum]

Hi, and welcome. I just wanted to say that you should ask your doctor if the twitchiness means you're taking too much Mestinon. It takes a little finesse to figure out the right dose and frequency. Too much Mestinon will make you weaker. If you are taking a little more than your body needs, you might find that a smaller dose works even better. But don't make any changes without talking to your doctor.

I also want to second what Annie said about getting off the Mestinon before your SFEMG. Since you're seronegative (they didn't find the antibodies) it's harder to get a diagnosis, so you want the SFEMG to be as accurate as possible. Like Annie says, too, make sure you're warm. If the room is chilly, they can use a heating pad to warm the muscle they're testing.

Don't be too discouraged by what you read here. This board has a higher proportion of hard cases than the general pool of MG patients does.

Abby

[trihead]

Thank you all for your replies. My SFEMG isn't scheduled until May 8th at the U but fortunately, my symptoms have not impacted my daily life (especially with Mestinon response). I did reach out to my neuro-ophthalmologist to ask about dosage. He recommended I stick at this dosage for a bit and see how the body responds and we'll connect early next week.

Annie, any local recommendations you have (Docs, etc.) would be welcome. As of now, I will primarily be engaging at the U but if I get a positive diagnosis, I would welcome feedback on comparing long term care/support between the U and Mayo.

For everyone else out there, thanks again for reading and your support. I look forward to getting answers and sharing with you all soon.

[teresakoch]

It certainly sounds like you have MG (the "good" response to the Mestinon is almost always a dead giveaway).

When you are one of those who has been diagnosed based on a droopy eyelid as the first symptom, you need to know that the MG will probably progress over the next 1-2 years; fortunately, when it is caught early, you are able to pay closer attention to what is happening and address any issues you may have right away.

You may very well find that it will become harder to continue with marathons and triathlons. Our bodies do "betray" us with this disease.

Definitely continue as long as you feel you are able to, but PLEASE exercise caution when doing so - the muscles that allow our lungs to expand and contract are affected by MG, and if they run out of Acetylcholine, THEY WILL CEASE TO FUNCTION. If that happens, you will not be able to get oxygen from your lungs to your brain and you will die without immediate mechanical ventilation.

I'm not trying to scare you. (Really!)

This is a reality that all of us have to face with this disease. We have to be extra careful to listen to the signals that our body is sending us. If we start to feel tired, we MUST rest. It sucks, but the alternative sucks even more.....

If I could offer a suggestion: Stop the triathlons immediately. If your body gives up on you during the swimming portion of the triathlon, I'm not sure that the medical team could get to you in time to save your life. (Even swimming pools are a dicey situation for people with MG - it is imperative that we have someone paying attention to us at all times to prevent possible drowning)

I'm guessing that your parents are still alive - don't put them in a situation where they may have to bury their beloved son. (I say that as a daughter who had to watch her parents go through that when my sister unexpectedly passed away - if you can take steps to prevent that from happening, DO)

I know that this may sound harsh, and I apologize. We all have to adjust our way of life, depending on how our bodies react to this disease. Some people have a more mild case than others, but we never know who is going to have a severe presentation and who will be just mildly inconvenienced by it.

All of us pray for the best, but prepare for the worst - it's all you can do.

Over time, you will make peace with your body, but it's going to take time. There will be good days and bad. You will rail against the hand that you have been dealt, but then you will find yourself looking at other people who find themselves in a much worse situation, and you will realize that you CAN deal with this.

This is a GREAT group of folks - they've pulled me through on the days when I was feeling sorry for myself, and they've been an invaluable source of information. We're all here to help you get through this!

[AnnieB3]

TriHead, As soon as you get a diagnosis, I'll give you some recommendations. Tell me if you live closer to St. Paul or Minneapolis. I don't know anyone who wants to have an ongoing neuro from Mayo - it's too far to drive for most MGers!

I hope you get answers soon.

[trihead]

Originally Posted by AnnieB3

TriHead, As soon as you get a diagnosis, I'll give you some recommendations. Tell me if you live closer to St. Paul or Minneapolis. I don't know anyone who wants to have an ongoing neuro from Mayo - it's too far to drive for most MGers!

I hope you get answers soon.

Thanks Annie. I will be at the U on Tuesday for the SFEMG. The only noticeable symptoms continue to be the droopy eyelid and double vision. Both of which are manageable. I have lightened up my physical activity but still am able to go for a 3-4 mile run without any issues. Working on getting more rest this month (although difficult with three kiddos including a 5 month old).

I have my follow up appointment on the 10th with my neuro ophthalmologist. Double edged sword on whether to pray for a diagnosis but would like to be able to at least "name" what I am dealing with.

Thanks again for the support. And got the notes on the SFEMG prep: get off Mestinon for 24 hours, well hydrated and stay warm (although with weather like this, that won't be hard).

[J King]

trihead -

Thanks for your post. I'm a 33-year-old man recently diagnosed with myasthenia gravis. No fantastic success stories yet but this is all pretty new to me. I practice mixed martial arts but haven't been attending much since my symptoms showed up. The double vision means I get hit a lot, but I hope that practice with one eye closed will allow me to compensate to some extent (or that the mestinon will restore my vision - no luck yet but I've been on it less than a week). More worrisome is my quick muscle fatigue/weakness, mainly in the right shoulder. I think that could be dangerous if my sparring partners are doing arm/shoulder submissions and expect a certain level of strength and technicality from me. I'm going to ease back into it and discuss with the people I practice with. There's a great team spirit at my dojo and we all help each other improve, so as long as people are conscious of these issues we should be able to keep it fairly safe. And I'll sit out some exercises if I simply can't participate.

I have thymoma as well so will need surgery. Obviously I won't be able to work out while I recover from that, although I don't know the details yet.

The post above about not swimming is discouraging as I sometimes swim laps (badly) for cardio. I think it's safe enough in my case as the pool I use is less than 5' deep for its entire length as mentioned the only limb weakness I've had so far has been in the shoulders (mainly right shoulder). But I'll definitely keep that in mind when it comes to ocean or lake swimming.

Good luck with the triathlons and marathons. I hope you can post your own success stories or trials & tribulations in training.