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lotusbri

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I'm sorry I am posting here again, even though Wright says my EMG is clean (therefore no ALS). I'm just hoping that you all have read enough "updates" from people who turn out not to have ALS, to possibly point me in another direction.

I hate to repeat my whole story because typing has become so difficult (nearly impossible) and also because I don't want to bore/exhaust the kind people here that take the time to respond, even though it's extremely difficult for many of you (I'm forever grateful I promise). I will give the cliff notes version.

16 months ago, healthy as possible...eating healthy, exercising, working full time, loving life. Out of the blue I had a fainting episode and then many months of strange autonomic type things. I never fainted again (except on tilt table test) but had a lot of near syncope. I also became very intolerant to heat and exercise, my heart rate was unstable (racing for no apparent reason), insomnia (have not had a good night's sleep since all this began), and then a feeling of heavy (almost awkward arms). a year ago I had a clean MRI (doc says no MS), clean NCS, and clean EMG (although it was not an in depth EMG...only two arms and I don't remember the doc asking me to engage my muscles at all). Doc says all clean...blames it on anxiety and sends me on my way.

Fine...
I take steps to manage my anxiety, see a shrink, take anti-depressants, etc. I feel better emotionally, but physical symptoms progress.

Fast forward to about 6 weeks ago. Body starts doing very weird things. I feel a sort of internal tremor going on, by the end of the day I feel like my core can't support the weight of my body and I begin to "crumple" every evening like I can't hold myself up. I'm sent to Hong Kong (I live in mainland China) where I have a whole battery of blood work, another MRI, another NCS, CT scan, PET scan, appointments with rheumatologist and everyone says I'm fine. I ask the neuro repeatedly if he can rule out ALS/NMD and he skirts the question every single time. He never gave me a straight no although he doesn't suspect it.

Fast forward to now. My arms feel like they are dying more each day. I'm dropping stuff, typing is horribly difficult and I'm hitting all the wrong keys. Anytime I try to pick something up or raise my arms I immediately get cramping around my shoulder blades which radiates down my back and into my arms. I've had minor fasciculations over the last 16 months (I remember telling the neuro about them a year ago and not knowing the technical term telling her it feels like a baby kicking in utero...except they are all over) but now I have them all over. Just in the last week I'm now experiencing body wide cramping as well.

Once everything came back clear I took a sigh of relief and self diagnosed myself with BSF. Still....the loss of function in my arms and the cramping just doesn't seem to fit the bill. I'm scared to death I'm slowly becoming disabled and all my doctors are just sitting back watching the show.

I don't know where to turn or what else I could possibly be tested for.

I have a sleep study in December and I'm hoping they will do a muscle biopsy as well...beyond that I'm just flat out of ideas and I'm so incredibly tired of feeling like I have to figure this out on my own. I feel like I'm absolutely of sound mind. I love my life so much. I'm not kidding when I say I have virtually no stress beyond what's happening to my body.

please...
I beg of you....
any suggestions that you have are so greatly, greatly appreciated
 

Tokahfang

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I'm sorry you're having such a tough time. Sometimes, especially in the realm of mysterious neurological disorders, it just becomes a matter of time. You sound like you've been very thorough, if your sleep study and possibly biopsy don't reveal anything, you might have to settle into living with Lotusbri Disease for now. Keep your mind healthy, do what you need to in order to make your daily activities work, and see how things go.

Not all of what they call "functional" neurological problems (essentially software problems instead of hardware problems) are the result of stress or anxiety. Sometimes they are just frustrating software glitches that don't show up on tests because all of the hardware is left intact. They can be disabling. We don't understand them well yet, though, and they are hard to learn anything useful about.

In my own case, I was without insurance for a very long time. After I got the tests I could afford, that screened out most of the major curable things, they hadn't found anything. I made a concious choice that I would treat it as it was, obviously progressive and incurable at my current level of medical options. You don't need a diagnosis to buy a typing tool or almost any other assistive thing. I was in a wheelchair for 3.5 years before I got medical insurance again, and during that time I had many great experiences. Freed from searching for a name, I got married, cared for my infant niece so my sister could work, went camping, hiked, even visited a mountain top a few times and the bottom of a waterfall once.

I think once you have done what you can, it is time to rest. Learn about what it means to function as you, get what you need to help, and dig back into life. Maybe your symptoms will lead somewhere diagnosable and even treatable in time, but don't waste that time.
 

notme

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ALS doesn't affect things like the heart--nor does it ever cause someone to faint.

There are a lot of things that do--I think I gave you the list of them last time you posted. Have you asked for a cardiac stress test? Done a Holter Monitor for 24 hour heart monitoring?

If you're having weakness in your arms, have you had your neck checked? (though if there IS weakness, it would/should have shown on the arm EMG and/or NCV if in the nerves)

There are all kinds of neuropathies--but those show on the tests, too. Have they checked for trapped nerves in your arms? There's a disorder, the name escapes me at the moment, that causes arm issues--and it's not the neck, it's something in the shoulders. (NOT a MND)

I don't think we are going to be able to give you more than the doctors can. MS can present with a clean MRI of the brain. There are other tests that need done to totally rule it out--evoked potentials, Spinal Tap, MRI's of spine, not just the head.

Myesthenia Gravis is possible--have they tested for that?

Are you on any meds?
 

lotusbri

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thank you for the note notme

I have been cleared of any structural or electrical issues with my heart. the doctor's basically said the fainting was "common faint" and to manage with salt and hydration, which I have done so far.

I have had two c-spine MRI's and the docs say there is no issue with my neck. I've also had a pet scan and was told I have no significant inflammation. As for trapped nerves in the arms, my EMG noted "mild ulnar neuropathy" but the neuro didn't seem concerned and didn't give me any information on how to manage it. Since I had an additional nerve conduction study a year later, would that show if the nerve problem was worse than before? My doc in HK didn't mention it.

I was screened for MG...told that I was negative.

I'm not on any meds, although I take a slew of vitamins...multi, calcium/vitamin D, coq-10, magnesium, b12, and lately potassium (because of the muscle cramping).

I have never had a spinal MRI, but I have had a PET scan. Would that show issues with the spine?
 

lotusbri

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notme,
if you think of the name of the shoulder thing will you please let me know? my issues definitely seem to be in that region!
 

lotusbri

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Beky,
your post made me cry (uh oh call the doctor...it seems I'm depressed LOL). No but seriously....I appreciate your suggestions and your post gives me hope. I take your advice very seriously. In face my doctor wanted me to come in today for more blood tests (this time potassium - which I swear I get plenty of). I told him I'm taking a break and that I'd see him after the new year.
 

poosmum

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At the beginning of the year i was absolutely 100% sure i had ALS. No one could tell me i hadn't. I had an EMG which showed no abnormalities apart from C7 Radiculopathy. I was twitching 24 hours a day. I 'had' atrophy and 'weakness'. I spent HOURS doing tests on myself, finding that my reflexes where brisk... ALL these things together meant i MUST have a MND. EVERYDAY got worse and worse... i was experiencing all the symptoms of the illness. I was slurring, choking, i was experiencing body vibrations, the lot.

Then, i went to my doctors and he told me that if i didn't go on anti depressants i would end up in the mental hospital or dead. I self medicated for weeks with alcohol, i was a mess. It took a good 6 - 8 weeks for all my 'symptoms' to disappear.

BOTTOM LINE IS - I WAS CONVINCED as i was experiencing so many different symptoms - but if your EMG was clean, you ARE fine.
 

lotusbri

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ummm....
a clean EMG doesn't mean "you're fine" it means no ALS. I have put ALS to rest for the most part, but my hopes in coming back here were that the kind people here had seen enough "it's not ALS it's _______" to make some suggestions of other things to run down. As mentioned, I too went on anti-depressants, saw a shrink, meditated, got acupuncture, stopped drinking (not that I drank much before), gave up gluten, ate a very healthy (mostly raw) diet, exercised (nearly impossible now), gave up coffee, etc. to no avail...my symptoms still persist and continue to get worse. Still...I appreciate the tough love on here and realize no ALS means I should probably get off the board.

Thanks to everyone that responded though. I continue to think of so many of you on a daily basis.
 

Tokahfang

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You don't have to leave, lotusbri. You'll note some of our former worriers with hundreds of posts, mostly from shooting the breeze or helping current worriers. Plus, whatever it is, you might find some practical help in terms of how to get things done. I'd suggest checking out notme's book thread in "other" in honor of trfogey.
 

lotusbri

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I've been reading so much about trfogey. Last night I cried for a man I never knew.
this group has been wonderful....
thanks for letting me stay.
 
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