[Lesmom96]

A little background: 6 months ago I was training for a marathon and began to have knee pain and fatigue. I was unable to progress with my running. I eventually stopped and the knee pain went away but the fatigued continued. I saw my GP and she order blood work (all normal), MRIs (5 in total all normal except degenerative disc disease and an old herniated disc) and 3 months ago I began to experience wobbly gait, muscle fatigue, difficulty swallowing and trouble articulating words. Saw Neurologist 2 weeks ago that specializes in MG and she said she was 99% sure by physical exam (repeated strength testing) and history that I have MG and started me on Mestonin. I had blood work for antibodies and all three were negative. I did have elevated WBC including neutrophils and monocytes. No signs of infection except the fatigue. The Mestonin seems to helping but with the variability of my symptoms and possible placebo effect I can't be sure.

Has anybody had increased WBC with MG?

[rogerm213]

As a runner myself I experienced a bit of what you are talking about. I was never a fast runner and did all of my marathons and half marathons using a Galloway run/walk program. I did a half marathon in Rhode Island in mid August and found while I never was winded my legs just could not keep going even with the run walk beyond 8 miles. Two weeks later I went to Disneyland for a half and struggled from mile 1 but pushed through mile 8 before walking in the last 5 miles. Again my legs were exhausted.

10 days after getting home from Disney the double vision started and my left eye would not open. within a week I was struggling to type and butter toast. I have tested positive now for MG and have had 5 plasmapheresis treatments and I am on increasing prednisone doses. I am still not sure if it was MG that was causing the troubles while running but I think things may be related.

I am hoping to get this under control as I am signed up for the Disney Marathon in January. It may be a long shot but I need a goal to keep my spirits alive.

[AnnieB3]

Hi, Lesmom96. Welcome.

Did your doctor do the MuSK Antibody test? Did you get copies of the test that was done?

If you are concerned about the high WBC, you should see your internist. They can do more testing and try to figure out the cause. It's not something that would directly be related to MG. MG is all about fatigable muscle weakness that gets worse with sustained or repetitive activity and relatively better with rest.

Since some MG patients can have a thymoma, a tumor of the thymus gland, neurologists usually order a chest CT to check for that. It's "possible" that if you had one, you MIGHT have an elevated WBC. But, again, it could be completely unrelated!

Only a doctor can tell you what's going on.

I had to giggle when you talked about Mestinon having a placebo effect. For those of us who've had MG a long time, it's very obvious that Mestinon has a very REAL effect.

Good luck in figuring out the WBC. There's a lot to learn about MG. I hope you'll ask as many questions as you need to.

Annie

[Lesmom96]

Thank you Annie,

The Antibody tests that I had were: AChR modulating, blocking and binding. if that makes sense? No MuSK. I suppose that will be next.

As far as not knowing if the Mestinon is working or not, I believe it is. But I am only taking 30 mg 2-3 x /day. From what I understand that is a pretty low dose. My husband says that he has noticed I am walking better. I can't run and I have good and bad days. That variablilty has not changed.

I don't see the neurologist for 2 more weeks and I'm getting frustrated with the amount of time between tests. I feel like I have been in limbo for 6 months and this increased WBC's has put a new spin on my worries.

I have lots of questions. Is it best to put them here or as a new thread?

[Lesmom96]

Originally Posted by rogerm213

I am hoping to get this under control as I am signed up for the Disney Marathon in January. It may be a long shot but I need a goal to keep my spirits alive.

Good luck and keep on running! You give me hope as I really want to run again!

[rogerm213]

Originally Posted by Lesmom96

Good luck and keep on running! You give me hope as I really want to run again!

I am so new to all this I have no clue what to expect. I tried to run a bit the other night for the first time since I was diagnosed and I had to walk. I could not get air in my lungs and that was an experience I have never had. I was gasping for air 3 minutes into my run.

Think positive thoughts and perhaps we will both get back out pounding the pavement.

[hajile99]

I know it's not highly prescribed due to the dangers that surround the disease, but I've pushed through and have started running again after about a two month hiatus. I'm not going to say most people should, and the dangers of running/exercising must be taken into consideration, however, I'm happier now being able to run again than I have since I first started experiencing symptoms at the beginning of July.

Prior to developing my symptoms and receiving a diagnosis, I had three half-marathons in November, December and January, as well as a relay in November, already scheduled. I may have to walk any or all of them, but I'm bound and determined to finish them, one way or another. And I've been feeling good enough recently (and I've been running again recently), that I've signed up for another relay coming up this weekend.

Good luck to both of you that you will be able to progress through the disease and be able to run once again!

[rogerm213]

Hajile, I have a friend who only after I was diagnosed told me he also has MG. His was occular only but he is back running and doing marathons. This give me hope that I can still make that happen. I was traveling with a group of 14 people next weekend to the Runner World Half Marathon in PA. I have accepted I will not be running but I am still going to make the trip to cheer them on.

Good Luck with your running and listen to your body. From what I learned from my friend there will be days when you just need to rest when you really want to run.

[Lesmom96]

Originally Posted by rogerm213

I could not get air in my lungs and that was an experience I have never had. I was gasping for air 3 minutes into my run.

I tried to run last night and I had the same experience. In fact, I have been feeling a little short of breath all day today. I know for now, running is not going to be possible but I will try again in the future.

[alice md]

Running (even a marathon) is definitely possible for a patient with MG who is in remission or has a very good control of his/her disease.

Walking a longer distance than you should (which can be no more than 200 meters) can be dangerous for a patient with significant uncontrolled MG.

Only you know what your physical abilities are at a given time.

One MG patient can go from being on a respirator to running a marathon.

Another MG patients can never walk more than a short distance.

It depends on the nature of the illness and the way it responds (or doesn't respond) to treatment.

As you well know a trained marathon runner will never run at a speed which is beyond 70% of his maximal ability.

The elevated white cell count can also be the result of over-vigorous exercise.