Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 10-15-2010, 05:41 PM #1
athena athena is offline
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Default Wobbly hips?

Can anyone describe the feeling of hip girdle weakness? I have been having proximal muscle weakness for over a year now. MG has been ruled out; now we're testing for LEMS. Recently mild exercise causes me to lose stability in my hips. For the past year or so frequently I'm off kilter when walking (can't walk a straight line). Recently when I'm standing while a bit tired my hips won't stay still. It feels like my pelvis is tilting back and forth and, try as I might, I can't get it to stay still. I end up leaning on something for support. Does that match anyone else's experience? I'm having trouble explaining it to people.

Thanks!
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Old 10-15-2010, 06:00 PM #2
Stellatum Stellatum is offline
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Athena,

I am so excited to read your post! I have a weird weakness that doesn't seem to match anything I can find on the internet, and yours is the first description that even comes close.

I'm not quite sure if you're describing matches my weird problem, which is also hard to explain. Here goes. I tilt to the left and right (and sometimes backwards) from the waist up. If I tilt to the left, I try to straighten myself up and go too far and tilt to the right. So sometimes I swing wildly back and forth like an old-fashioned metronome.

If I am only mildly weak, I can compensate by walking with an exaggerated swing to my hips, only this gets me cat-calls on the street, so I try to avoid it.

I am honestly not sure which muscles are causing this--I think it's the muscles in my sides and lower back.

When I'm tired, I can't walk. My upper body starts to tilt in one direction and that throws me off balance, and I have to either stumble to catch myself, or I crash into a wall. I use a wheeled walker sometimes to hold my upper body straight, but it's not that helpful anymore, because when I'm tiltiest, my arms are also weak.

I tested negative for the MG antibodies (and LEMS also). But I think I have MG, and I think eventually they will find the antibodies. It's not so uncommon to test negative at one point and positive later on. Have you had a single-fiber EMG? There are people on this list who tested negative for the antibodies but are diagnosed on the basis of their SFEMG.

I take Mestinon even though my doctor thinks I don't have MG. It helps me a lot. That is, it doesn't seem to help me at all except when I don't take it--and then I notice how much it was helping me.

Anyway, I wanted to say: hello sister! I am happy to find you. I wish you strength and answers.

Abby
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Old 10-15-2010, 06:18 PM #3
athena athena is offline
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Wow! You're swinging and I'm tilting! What a great dance team we'd make!

I think, but am not sure, that my weakness is in the hip flexors and hamstrings when I'm experiencing this. I lose the muscle strength needed to keep my hip joints stable. Sometimes I feel some back and forth tilting in the lumbosacral area, too. I only feel the lateral tilting when getting out of bed in the morning or when turning a corner too fast. So far, no falling over. Our bodies are fascinating, aren't they? I'm amazed at what has to be going on in the "normal" body to keep it in a state of balance.

I had electrical testing done last year - an EMG and NCV. I don't know if the single fiber EMG was done. My current doc, a rheumatologist, has spoken to the neuromuscular specialist who did my testing (the only one in our state) and she feels that she has nothing else to offer me.

Quote:
Originally Posted by Stellatum View Post
Athena,

I am so excited to read your post! I have a weird weakness that doesn't seem to match anything I can find on the internet, and yours is the first description that even comes close.

I'm not quite sure if you're describing matches my weird problem, which is also hard to explain. Here goes. I tilt to the left and right (and sometimes backwards) from the waist up. If I tilt to the left, I try to straighten myself up and go too far and tilt to the right. So sometimes I swing wildly back and forth like an old-fashioned metronome.

If I am only mildly weak, I can compensate by walking with an exaggerated swing to my hips, only this gets me cat-calls on the street, so I try to avoid it.

I am honestly not sure which muscles are causing this--I think it's the muscles in my sides and lower back.

When I'm tired, I can't walk. My upper body starts to tilt in one direction and that throws me off balance, and I have to either stumble to catch myself, or I crash into a wall. I use a wheeled walker sometimes to hold my upper body straight, but it's not that helpful anymore, because when I'm tiltiest, my arms are also weak.

I tested negative for the MG antibodies (and LEMS also). But I think I have MG, and I think eventually they will find the antibodies. It's not so uncommon to test negative at one point and positive later on. Have you had a single-fiber EMG? There are people on this list who tested negative for the antibodies but are diagnosed on the basis of their SFEMG.

I take Mestinon even though my doctor thinks I don't have MG. It helps me a lot. That is, it doesn't seem to help me at all except when I don't take it--and then I notice how much it was helping me.

Anyway, I wanted to say: hello sister! I am happy to find you. I wish you strength and answers.

Abby
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Old 10-15-2010, 10:58 PM #4
AnnieB3 AnnieB3 is offline
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I don't know if you guys have seen this site or not.

http://neuromuscular.wustl.edu/synmg.html

And simply because you don't have MG antibodies does not mean you don't have an "acetylcholine" disease.

Quote:
Semin Neurol. 2004 Mar;24(1):111-23.
Congenital myasthenic syndromes.
Harper CM.

Mayo College of Medicine, Rochester, Minnesota, USA.
Abstract
Congenital myasthenic syndromes are genetic disorders of neuromuscular transmission that should be considered in the differential diagnosis of seronegative myasthenia gravis and other neuromuscular disorders. They are present at birth but may not manifest until childhood or adult life. A classification system of congenital myasthenic syndromes based on molecular genetics is under evolution. Clinical and neurophysiological correlations with molecular studies have defined diagnostic criteria that assist the clinician in identifying specific clinical myasthenic syndromes. Some types of congenital myasthenia (e.g., slow-channel and fast-channel syndrome, acetylcholinesterase deficiency, and choline acetyltransferase deficiency) can be identified by clinical features, response to cholinesterase inhibitors, and standard electrodiagnostic studies. The molecular genetics, pathogenesis, clinical features, differential diagnosis, natural history, and treatment of well-characterized congenital myasthenic syndromes are discussed.

PMID: 15229798 [PubMed - indexed for MEDLINE]
If you page down in that WUSTL site, you'll find limb girdle MG/CMS.

Have you both been tested for polymyositis?

Just thought I'd throw that info out there.

Athena, A doctor who "gives up" on you after doing the least amount of testing is not worth their degree. Get a copy of your test results so that you KNOW what was done and what the results were. Don't take their word for it.

How long have you had symptoms? Do they get worse with activity (obviously they do, like after running)? Keep a log of symptoms and when they happen. It will help.

I hope you guys get answers as to what is really going on!

Annie
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Old 10-16-2010, 11:28 AM #5
Stellatum Stellatum is offline
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Annie,

Thank you. I always appreciate how you take the time to help, even when you're in the middle of your own crises. I know so little about it that I'm really hesitant to say anything, but I hope you will, as you mentioned, have your other fat-soluble vitamin levels tested. If it's an absorption problem, isn't it likely to apply to vitamins A and D as well?

I had looked into polymyositis briefly, and I ruled it out because I have no pain (note to self: remember never, never to take this for granted!). As for some sort of congenital myasthenic syndrome, I did ask my doctor about it, and he ruled it out, though I can't remember why. Maybe because my EMG is normal? I can't remember. I am 44, which is one factor that makes it very unlikely. But, when you've ruled out the likely stuff, unlikely makes sense, right?

I see him again in a few weeks, and I'll ask about both. I think that one reason he thinks I don't have MG is that I've been emphasizing the weakness in my sides and back. This time I'm going to talk more about my other symptoms, which are more typical of MG: weakness in my arms (can't carry a jug of milk from the car, had to take breaks yesterday while mixing up biscuit dough, that sort of thing), weakness in my legs so that I sometimes have trouble standing (the slow collapse), and weakness in my neck, so that my head falls forward when the car hits a bump. That sounds more like typical myasthenia, doesn't it? These symptoms are more intermittant than my tiltiness, but they're real.

Thanks again, Annie.

Abby
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Old 10-16-2010, 03:51 PM #6
AnnieB3 AnnieB3 is offline
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Thanks, Abby. Not much I can do about my symptoms until the cause or causes are all figured out, which I don't think they have been. We all have a tendency to talk to doctors about our worst symptoms and not all of them, which is why I think writing things down for a doctor is such a good idea. I still suspect you have MG, even without the antibodies.

On that website, there is MG, LEMS and CMS. They can all have an onset at any time in life, even CMS. There are adult onset CMS's too. The blood tests for CMS are covered by insurance if a doctor suspects that. They are often sent to Mayo in MN but WI has a lab too, but I don't know anything about it. Sorry, guys, I can't remember who had brought the WI lab up!

Athena, I hope you will consider a 2nd opinion from an expert. Neurologists are not "all-knowing," as much as they like to think they are. Some of these diseases are odd little things and they may not even think or know about them while checking you over.

Sorry you guys are in limbo. At least there's lots of company there!
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Old 10-16-2010, 04:23 PM #7
Stellatum Stellatum is offline
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Thank you, Annie. I am at peace with Limbo for now, because the Mestinon controls my symptoms well enough that even if I had a firm diagnosis of MG, I'm not sure I'd agree to starting immunosuppressants. If I start to decline, or if some doctor decides to take away my Mestinon, I'll have to fight harder. I could insist on a trip to Mayo, for example.

All my sympathy is with people in this sort of Limbo who are being denied treatment they could get if they only had a diagnosis--especially people who are suspected of being hypochondriacs.

Abby
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Old 10-16-2010, 11:14 PM #8
athena athena is offline
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Thanks, Ladies,

I love the website you cited, Annie. I've had it bookmarked for a year or so and refer to it every time I have new procedure or blood test to see if I can glean anything new from it.

I've been having symptoms for a year and a half now. It started with hiking, and now that my level of exertion is down, I get weakness with yoga, cardio in the gym, or long walks. I just listen to my body and rest when I feel the weakness coming on.

My first neurologist tested me for MG antibodies, then referred me to a neuromuscular specialist for the electrical studies. From there I had a biopsy for metabolic myopathies which showed a dysimmune process sort of like polymyositis but more consistent with a paraneoplastic response. My rheumatologist has been unable to come up with anything related to connective tissue autoimmune disease and will refer me to a neurologist out of state if the LEMS antibody results we we're waiting for come up negative. On paper I'm perfectly healthy except for the muscle biopsy.

Thanks for your advice and support!

Athena
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