My walking trouble, etc.
 

Hi folks! I have had many years of undiagnosed symptoms and don't believe I'll ever get an explanation for them, but there is one that has gotten a lot worse over the past 10-12 years and I NEED to figure out what is causing this one.

I don't have any typical MG symptoms such as droopy eyelids or trouble breathing, and I'm not necessarily "weaker" at the end of the day.

My big problem is: I can START OUT walking at a fine pace, but I can only walk one or two blocks continuously before the muscles (I guess) in my hips get EXTREMELY fatigued to the point of feeling like burning, and I HAVE to stop in my tracks.

I then have to stand there for a minute or so, then I can resume walking with the muscles feeling reasonably fresh (the longer I stand, the fresher they feel). But then--another block--and I have to stop again. Then I can continue walking SLOWLY, but it's really uncomfortable because my hips feel like the muscles are very strained and it's difficult to continue. Like walking up a steep hill when you're walking on level ground.

Eventually, particularly if I'm already tired that day or have been standing for a long time, I might be able to walk only a few steps at a time before stopping.

Does anyone here have a similar problem?

It's kind of the same thing with my arms--they get tired quite easily, though a short rest (less than a minute) brings them back. Like, I cannot clap as long as everyone else at a performance. Not nearly.

I also have a weird thing with my eyes: continuous reading, especially fast reading, when looking down, causes me to get vertical ghosting in both eyes within about a minute. I then have to tip my head upward in order to have clear vision. (But my eyelids do NOT droop--it is a problem with my EYES.)

If I wear my strong reading glasses with an "add" (whatever that is), I don't get the ghosting problem while reading.

This problem also began maybe 10 years ago and has gotten worse. Now, all I have to do is be very tired (sleep-deprived) for the ghosting to occur spontaneously, without reading.

It is not true double vision, and it does not go away when I cover one eye. It disappears when I look through a pinhole, so the ophthalmologist said it was a refractive problem. But that was after he asked about MG, whether my neck got tired, whether I had breathing problems (no).

I said I'd had a blood test for MG in 2001 and it was negative, and he said well, myasthenia gravis can be hard to diagnose... (I have had no other tests for it, just the one blood test 13 years ago).

I am seeing an orthopedic physical therapist because several years ago I was told by a physiatrist (who I don't think was exactly top-notch) that the walking problem was a vague "muscle imbalance" due to my scoliosis. The PT I saw at that time and this one too thinks that is NOT the case. In fact this PT even mentioned that the blood test for MG does not necessarily rule it out. (I did not ask her about MG, I was just listing the tests I'd had done.)

I do sometimes get quickly tired jaw muscles when singing or chewing something like bread or meat, but I have no trouble talking.

I also have Lhermitte's, dizziness, hearing loss, and a history of paresthesias, so you can just imagine... I have been labeled a hypochondriac, an anxious patient, etc. through the years. I just cannot seem to make doctors understand that 10 years ago I was walking over 2 miles continuously VERY fast and easily, no problems, and then this hip-muscle thing began and has now progressed to the point that I can't walk two blocks without stopping--this is NOT normal!!

Thoughts, anyone?

New neuro and another blood test
Mike

Yes, a new doctor! Anyone mentioned MS? You actually have more MS symptoms than MG--the L'hermitte's and parasthesias are especially telling. You may want to visit the nice folks on the MS forum if you haven't already.

It all sounds familiar to me, especially the clapping. Sometimes on a day when I don't feel weak, I notice I can't clap for long. It's quite common for people to test negative for MG at one time, and positive later--or to continue testing negative and still be diagnosed with MG. You need a test called a single-fiber EMG (SFEMG). Not every neurologist can do this test--you'll need one who specializes in neuromuscular diseases.

My MG took 15 months to diagnose because I don't have eye symptoms. At the time, my only symptom was a weird, swaying walk.

Abby

Nancy, you sound very similar to me and I have been diagnosed with MG. I think all your symptoms are pretty typical of MG - especially the muscle fatigue. Your eye symptoms are typical of double vision - they are resolved when you cover one eye. On good days my eye symptoms are blurry, on bad days, there are 2 distinct images. I had prisms put in my glasses and they really helped the double vision. You might want to ask you eye doctor about them.

I am seronegative too and was diagnosed by a single fiber emg test. I would recommend seeing a neuromuscular specialist at a large teaching hospital and asked to be re-accessed. You have not been tested in some time. The test have improved and there are more antibody test now to detect MG. MG is a very rare disease and most local neuros do not have much experience. I urge you to go see a neuromuscular specialist at a large teaching hospital that see MGers all day long.

I also have the constant dizziness, tinnitus, GI issues and I think they are additional autoimmune diseases. Mgers often have more than 1 autoimmune disease.
Good Luck
kathie

Thank you Mike, Abby, Kathie, and 4-eyes for the replies! I appreciate it! :)

Mainly I am just wondering if the specific walking problem--having to stop and rest a minute after just a very short distance--and then able to walk again though more slowly after a short rest--is that typical of MG??

That is the only problem I am taking up with doctors again. 4-eyes: I have had MS investigated PARTIALLY and was once told I had it, then shuffled off. So I've spent plenty of time on MS forums. :) Unfortunately due to my scoliosis they were never able to get spinal fluid out of me and my MRIs have been only nonspecifically "spotty".

The last neuro I saw, 2 years ago, had no interest whatsoever in finding out what was wrong and was half stupid, so I would love to get a GOOD neuro but I don't know yet. First I have to convince my regular (new) doctor that my past workups were NOT sufficient.

Kathie, actually the ghosting that I get after reading (or just from being very tired) does NOT go away when I cover one eye. It's in each eye separately. So it's something weird. I saw eye specialists but no explanation, just glasses, but they do help.

Thanks much for the recommendation to see a neuromuscular specialist at a teaching hospital. There is nothing I would like better! The problem is getting there--and getting believed, when your symptoms are atypical or you have symptoms of possibly more than one problem and have already had some partial workups over a long period of time. Doctors just assume you have a "functional" problem. But I am 56 years old and I have had to think hard about my life recently and I just cannot go on with this stupid unexplained inability to walk more than two blocks--it's idiotic.

Thanks everyone!!

Wow, what a shame you've been shuffled around so. The "spotty" MRI in and of itself suggests MS. As for the "walking thing," to me it sounds more like it could be spasticity than weakness with the burning and just having to come to a complete stop, then letting things settle and starting again. Is that what is happening, or do you feel "loosey goosey" and wobbly and weak and then have to stop and gain strength again?

MS can cause so many strange vision issues, so frankly that could be MS or MG, but the likelihood of something "non-MG" is greater since you have it even with one eye covered.

I would suggest that when you choose and go to your next neuro, that you kind of start over with "clean slate" and just tell the symptoms and give a timeline of each thing, if you can. I would avoid telling of your tale of being shuffled around as much as you can, to help prevent the possibility of it happening again. Of course there are doctors out there who like to take on the "tough nuts" and hopefully you can find one of them.

Hang in there and keep looking for answers!

Nancy, I am 53 and I had these symptoms creeping on me for years. After a hysterectomy 2 years ago, the MG came on full force and has never gone away. The walking a short distance and having to rest is very typical of MG, thats what they mean by muscle fatiqueability, and then after rest you are better for a little while. But then with each excertion, you need more and more rest to recover. Right now, I can only walk normal for the first 3 or 4 steps until the muscle fatigue starts to slows me down. When I get really weak, my muscle start to burn, in fact I break out in a sweat all over. And oh the summer heat makes everything so much worse.

Do they have you on Mestinon? Have you ever tried it?

kathie

Hi 4-eyes, thank you for the response and the info. I don't think it's spasticity because I don't have any trouble to START walking, which I would imagine (?) it would be if your muscles were spastic. But I don't know that for sure. It's definitely not a matter of becoming weak and wobbly; I do get tired after not too much activity, but it does not feel like actual WEAKNESS, there's no danger of falling or collapsing. It's really just like you've used a muscle too fast and too hard and it burns, you can't go on without stopping to let it rest for a short while. So... I honestly don't know!

Unfortunately, MRI "spots" can be caused by things like high blood pressure, high cholesterol, migraines, and eventually just aging. I do have a history of migraine, though no problem with actual headaches (migraine can be painless and sometimes manifest mostly as dizziness). And apparently the "spots" are not in places suspicious for MS. So although they COULD be from MS, they are also seen in lots of people WITHOUT MS. The neurologists do not seem to think my MRI is particularly suspicious for MS.

Thanks very much for the encouragement to keep trying... when I see a new doctor, I do try not to burden them with all my history, but eventually they ask, or want my records, and once they see you've been worked up once (even if it was only a partial workup, or done long ago, or done by--in one case--a neurologist who did not care about getting things CORRECT, even my history and symptoms and specific points of fact) they just get this smile over their face and you can tell their thought process has stopped. I saw two "good" neuros in 2000-2002 but since then only the careless one, a couple of years ago. You really can't escape saying something about your history and previous workups... I do try to emphasize, and specifically ask for help with, merely my current problem, which is the walking, but so far I have not gotten anywhere on that front. I have a new PCP whom I see again later this month, so we'll see if he is interested... but after 14 years of symptoms I've run out of patience, so if he just gives me that smile, I am immediately going elsewhere.

Kathie, no I have never tried Mestinon. What you describe with your walking sounds pretty similar to mine, except that I CAN go pretty fast and easy for the first couple of blocks. Then with each subsequent effort, after a short rest, the distance and speed I can go get pretty quickly shorter. I use walking sticks when I know I'm going to have to walk any distance, and they help, but as time goes on I am still going downhill even with the sticks.

But you know, I wouldn't say I feel actual muscle WEAKNESS--at least I don't think it is--it's just FATIGUE and burning. I've had doctors and physical therapists test my strength many times (although never after repeated activity) and mostly it's normal. So... I just don't know.

Your story is almost exactly the same as mine. My leg and hip muscles got progressively weaker until I was only able to walk for about a minute before intolerable pain would start. I thought it was from a ruptured disk from over 20 years ago. My walk eventually became a waddle with little, short, mincing steps. Since diagnosis and starting Mestinon these symptoms are much improved. Now I can walk about 10 minutes before I have to sit down for a few. Then I'm ready to go another 10 minutes. I recently bought a Rollator so that I no longer have to worry if there is a chair or bench handy when my muscles give out.