[lojos]

To summarise quickly I have had symptoms for 3 years. I have been taking Mestinon for the last 18 months and it has improved my symptoms. All the tests I have had are normal. The neuros believe I don't have MG because my weakness is described as" collapsing or giving way" has anybody had the same experience with neuros please?

[Stellatum]

Originally Posted by lojos

To summarise quickly I have had symptoms for 3 years. I have been taking Mestinon for the last 18 months and it has improved my symptoms. All the tests I have had are normal. The neuros believe I don't have MG because my weakness is described as" collapsing or giving way" has anybody had the same experience with neuros please?

Could you describe this collapsing in more detail?

I have spells of weakness that come on quite suddenly, which my neuros say is "unusual" for MG. I have normal MG symptoms as well--all my muscles get tired and weak if I use them too much. But I also have "spells" of weakness, where I go limp all over quite suddenly.

I've been on Imuran for two years, and my spells are now less intense and don't last as long, but before the Imuran, they were like this: I would feel myself getting weak (it feels a lot like when you're drinking alcohol and feeling a "buzz"). Just a few minutes after I noticed that feeling, I would collapse--not fall, exactly, but go down slowly to a squatting position because my legs just couldn't hold me up any more. Sometimes I would get so weak I'd end up lying on the floor, unable to get up. Sometimes if a spell hit me while I was sitting in a chair, I'd find it very hard to stay vertical at all. These spells would last about 45 minutes, and then I'd recover enough to get up and walk. There was a time when I was on the floor so regularly that once one of my kids just stepped over me and kept going.

Anyway, my knees sometimes buckle, so I'm very careful on the stairs. Whatever muscles keeps you vertical, and stop you from bowing forward from the waist, often buckle, and then I, well, I make a quick bow from the waist--I fall forward from the waist up, and then right myself. Looks funny, I'm sure.

I am double seronegative (they never found antibodies in my blood for AChR or MuSK). I wondered for a long time if I have something else instead MG. I wondered specifically if I have a channelopathy like hypokalemic periodic paralysis or hyperkalemic periodic paralysis, because these come in "spells." But the neurologist who diagnosed me says that my single fiber EMG (by which I diagnosed) is strongly consistent with MG and inconsistent with HKPP.

If you are having trouble getting a diagnosis, I assume you've already tested negative for the blood tests--AChR, MuSK and LEMS. The next step would be to find a neurologist who specializes in neuromuscular diseases and who can give you a single fiber EMG (SFEMG).

Abby

[Fortunatos]

Originally Posted by Stellatum

...There was a time when I was on the floor so regularly that once one of my kids just stepped over me and kept going.
Abby

Abby, I burst out laughing when I saw this sentence because...it brought back a memory that my Mother and I would laugh about for years.
She was lying down on the living room carpet, just resting, stretching out...and I, a teenager, walked in, saw her lying there...bent over her and said..."Mom, do you know where my blue jeans are?"...

[Fortunatos]

Originally Posted by lojos

To summarise quickly I have had symptoms for 3 years. I have been taking Mestinon for the last 18 months and it has improved my symptoms. All the tests I have had are normal. The neuros believe I don't have MG because my weakness is described as" collapsing or giving way" has anybody had the same experience with neuros please?

Hello Australia Speaking only generally, and certainly not for any individual, during a neurological examination, it can mean that the patient is embellishing their weakness. This doesn't mean it's not there.

Sometimes, in pure frustration, a patient may be doing really well when they hit the neuro's office, and so, they try to duplicate the weaknesses. A patient may not realize they are doing that. When a neuro asks us to apply pressure with, say, our leg against his hand, h/she is watching the response of other muscles, and more often than not, the patient doesn't realize this.
You are not alone. This goes on, all...the...time. It's normal.

Trying to do your very best--make every effort at the examination--is the best route to diagnosis.

[southblues]

I often become suddenly weak and fall. I am seronegative. My neurologist thinks that it is due to MG. Mestinon helps prevent these episodes.

[lojos]

That is what the neuro called my weakness.I have never fallen over but when I am tired I cannot lift my legs up off the bed, I can't walk on tiptoes or heels, my legs are just wobbly. Weakness is in the arms jaw oesophagus and ptosis.I was put on Imuran but when I saw another neuro he thinks it is fibro so I haqve come off the Imuran. He saqid mky pattern of weakness does not fit MG.

[Stellatum]

Originally Posted by lojos

That is what the neuro called my weakness.I have never fallen over but when I am tired I cannot lift my legs up off the bed, I can't walk on tiptoes or heels, my legs are just wobbly. Weakness is in the arms jaw oesophagus and ptosis.I was put on Imuran but when I saw another neuro he thinks it is fibro so I haqve come off the Imuran. He saqid mky pattern of weakness does not fit MG.

Please try to see a neurologist who specializes in neuromuscular diseases. If you have ptosis, see if you can find a neuro-ophthalmologist. You should have your blood tested at least for AChR, MuSK, and LEMS antibodies. If you test negative for all three, you should have a single fiber EMG. From what I've read here over the last two years, the "pattern of weakness" in MG is very highly variable. Some people call MG "the snowflake disease" because it is so different from patient to patient.

Abby

[lojos]

I have seen 6 neuros--the 2nd to last one saying I have a rare neuromuscular disease that defies diagnosis. I have had 2 EMGS, 3SFEMGs, MRIS ,tensilon test all the blood tests ,a muscle biopsy to rule out myopathy,a test for Pompe Disease and am waiting for a test result for Myotonic Dystrophy.

My optometrist wrote a letter to the neuro saying he had observed ptosis on my right eyelid ( he had to hole my lid open) and I spent 10 days in hospital rehab to strengthen my muscles but I ended up with very very shaky legs for 3 days. my breating muscles are affected and my pulmonologist said it is indicative of a neuro-muscular disease.

[cait24]

Did you see a neuromuscular specialist that has a lot of experience with MG? Please see the MG of Australia link. They have an MG clinic in Sydney. If you do not feel your treatment is effective, I would try the MG clinic.
http://www.myasthenia.org.au/html/news.asp.

Unfortunately, MG is so rare that unless you go to a neuromuscular specialist that sees it all the time, patients often go undiagnosed or misdiagnosed.

I hope you have find your answers,
kathie

[lojos]

Yes a couple of them were neuro-muscular specialists. If it is fibro it doesn't explain the ptosis ,the difficulty swallowing when I am tired, and the difficulty in not being able to walk more that 50 metres with leg weakness and breathlessness. My oxygen rates decrease significantly after 2 mins.
I have day and night sweats and have 2 nodules that are monitored every 6 months as I have had breast cancer twice. I aalso have orthostatic hypotension.