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chopstick

Member
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Dec 19, 2011
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17
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Loved one DX
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US
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TN
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memphis
Hello. I’m 33 years old and I would like your opinion. I’ve been quietly reading for around eight months now. I think it’s great how you guys support each other and offer encouragement to all the twitchy people looking for answers who post on this site. I guess I’m officially one of those people now.

I know once I tell you of my “symptoms” you will tell me to go see a doctor. But I live in China. I have no insurance and I get one free round trip ticket to America a year. This year I had planned on buying a new computer with that money instead of going home, but this week two more things happened that make me wonder if I should go home to see a doctor. I don’t want to waste the opportunity for a new computer if I’m just being silly. That’s where you come in, if you don’t mind. Will you read my tale and tell me if I should come home. I’d like for you to tell me to stay here, that I can wait until next year. I mean, it’s already the middle of June. If I come home it will have to be mid July and I can only stay for two weeks. Is it even possible to make any progress in two weeks? I rarely go to doctors. I don’t get sick, so why go?

Okay, on with my story. I fell down February 2011 and sprained my ankle. I wasn’t running. I was walking. I wasn’t doing Chinese gymnastics. I was just placing one foot in front of the other. I stepped off a sidewalk onto a street and I was on the ground. I have no idea why.

Then in June 2011 the twitches started. I know, I know . . . twitches all over does not a PALS make. At that point I didn’t even know twitches were a symptom. I googled it. (I know! Really! All the inward groans – I Google diagnosed myself!) I didn’t jump to conclusions immediately. But I did pause when I saw ALS on the list of possibilities. My grandmother lost her battle to ALS in January 2011. I started looking into the hereditary bit saw the chances were slim. But I remembered Grandma saying she remembered seeing her mother die the same way, but they didn’t know what it was. Hmmm . . . could it just be Grandma putting two and three together to get four? I called my mom and told her my fingers were twitching. She said hers were, too. It had never occoured to me that what Grandma had could be hereditary. Her neuro told us it attacks people at random. He didn’t mention the hereditary bit. At least, not to me.

Finger twitches turned into fasciculations. I’ve had them for a year now. They were in my back a lot. Then my back went out. It started with the muscles. When I was 30 I had Xrays done and was told I had early degeneration of my spine. The pain went away back then because I stopped bending over when I washed my hair. I guess doing that on a regular basis aggravated my back. But this time I had done nothing to aggravate it. The doctor here told me to lay on my back for three weeks. I did for one. I also had some acupuncture. I was finally able to stand and walk around but even then not for long. My muscles felt like I had been holding a really heavy box for hours and I had to let it go. I had to bend over or sit down for relief. I bought a back brace and wore that for a few months on and off when I had trouble. I know enough from reading that you will tell me that with ALS things don’t get better. I’m just mentioning it to give a complete history. I can’t stand for long periods now. I have to sit down to brush my teeth or wash dishes because any prolonged bending of the back is too much for me.

After the initial wave of fear passed (and please note I didn’t bother you with my fears back then. I didn’t want to waste your time.) I just accepted that none of these things happening to me were ALS, just part of getting older.

Now my ankles are getting weaker. As are my wrists. Sometimes when I turn over in bed and I support myself on my wrists I feel like they are going to break. This week I was standing in my living room and my ankle rolled on me. For no reason. I wasn’t even walking this time. And it was the other ankle. It’s never done that before.

I started playing tennis a few months ago. But as I played, when I would hit the ball the racquet would turn in my hand because I couldn’t hold it tight enough. Because I never played tennis before I don’t know if that’s normal or a sign that my grip is weaker.

When I walk my dog it’s a given that she will pull her leash out of my hand at least once. She’s a medium sized dog.

If I go on an hour long bike ride I have to stay in bed the entire next day due to exhaustion. I feel fine on the ride but the next day I’m just so tired. Again, I’m new to bike riding, so I don’t know if that’s normal.

Last week I felt the fasciculations in my esophagus. This week and especially tonight I have noticed my voice changing. Tonight it sounds like I’ve been sucking helium. I guess that was the final straw. It’s the helium voice that pushed me over the edge. It’s what made me finally bother you guys.

I’m not a doctor person. I don’t take medicine. Before I moved here in 2010 I was put on high blood pressure meds. I changed my diet, lowered my blood pressure naturally and stopped taking the meds. When my back hurt me the first time the doctor just threw a prescription at me and said get used to taking them for the rest of my life. Instead I looked at my daily routine to figure out why all of a sudden my spine would be hurting me. I realized I had recently changed the way I wash my hair, stopped doing it that way and the pain went away. I never took the meds. I tell you this so you will know why I hate the idea of wasting my money to fly around the world to see a doctor who will probably just tell me to take this or that medicine without telling me what’s wrong with me.

So, this is where you come in. Mock me. Tell me I’m one of those paranoid people who looks to Dr. Google. Tell me I should totally stay in China and buy my awesome new computer and wait to come to America until next winter.

Also, what would a visit to a neuro cost? With no insurance. If I can’t afford it I’ll have to stay in China anyway! ☺

Thanks for your time!
 
I understand your issue. Is there anyway you can get the money together to see a good neurologist in China?
You should get an opinion of your symptoms by someone who is qualified.
Coming back to USA for only 2 weeks may not be long enough to get much done in the way of tests and investigations. You could get an appointment ahead of time at a place like Mayo clinic. They can get through the tests rather efficiently, but to get an appointment you will need to get it organized ahead of time.
I sent all my tests etc to Mayo from here in NZ and got an appointment at Mayo in Rochester very quickly. I didn't go in the end. Maybe you could do that. It's hideously expensive for overseas people, but I gather you are a USA citizen.

The best and cheapest thing to do is spent that computer money on seeing a good neurologist where you live in China. Your health is infinitely more important than a computer!
 
Ha! Come to my place and visit with my Chinese neurologist!
 
zaphoon - ha. Maybe your Chinese neurologist could come here and translate what a neurologist here might tell me. :)

Alyoop - I could get an EMG here very easily. I'm just not sure I'd understand what the results are! :) From what I understand they're hard enough to decipher in one's own first language, let a lone their second! Also, it's common practice here NOT to give the real results to the patient. If you have cancer they tell your family and NOT you. Your family gets to decide whether or not you should know. So what if my doctor lies to me and tells my friend the truth? But thanks for the advice. I guess I could try at least.
 
Until becoming ill I worked in China on their healthcare reforms for three years up until the end of 2010. I know a bit about the healthcare, pharmaceutical and hospital system there. My suggestion would be to get yourself to a GP at one of the Expat hospitals in the major urban centers to get an unbiased opinion on your symptoms. That should help both in assessing the urgency of your situation as well as getting appropriate referrals if needed.

These folks are usually expats themselves, or at least trained in western medical schools before returning. Their English is uniformly good. It will certainly cost a bit more than a local doctor, but less than a trip to the US. Hopefully, you can still get that shiny new computer!
 
Ok, Its your health vs. a new computer? is there really a choice? If you were to come back to the states, there are ways to see someone without having money. Its just up to you, if I were you, I would move back to the US and get to a doc. and fast. There are plenty of county hospitals that can make the diagnosis and once you have that you can file for disability. it is not great... but it ain't China either. I think your choice is clear.
 
You definitely shouldn't get an emg unless it's ordered by a neurologist and is part of the whole care package.
You need a English speaking neurologist. I am sure you will find someone who has done some advanced training in either Uk or USA. You will need to find a way to check the credentials and training. You must have a gp type person who can help you in some way. I admit it's not going to be easy and you are in a tight spot :)

Aly
 
I've posted something specific to China. Waiting for the moderation to clear. Summary is to go to a GP at an Expat clinic in a major city.
 
Pandora - it's not about my health vs. a new computer. It's about me wondering if I'm just drawing conclusions about random events and forcing them to equal ALS. I don't want to waste this once a year opportunity on paranoia. That's why I presented you with the whole picture to see if you think I'm being silly. I've been waiting for something more concrete to happen before I up and move to another country. There are people here who depend on me - I can't just up and desert them just because I'm worried.

But, based on your comments and the comments of others, I will assume I should pursue a medical opinion. Thanks for your opinion! I'm a Texan, too! :)
 
fitzroy - I look forward to reading your post. In the meantime I will see what I can find on xpat hospitals.

Aly - thanks again. I'll take your advice, but why should I wait to get an EMG? I admit I have no idea about the diagnostic process, but I keep reading that if people get a clean EMG then they can relax. . . for a while at least. In my head it would make sense to just do it and if it's clean then I can stay here. If it's not, then I know to go to America for real testing starting from the beginning.
 
I am not saying that you shouldn't get an EMG, what I am meaning is.......it's a decision for your treating doctor. If you go into a doctors appt and start suggesting tests that should be ordered, you will find that you will not be taken seriously, labeled with anxiety and shown the door.
It's for the doctor to examine the patient and get a comprehensive history. On that information , the doctor will determine what tests, if any need to be done and in what order. Too many people try to bully the doctors into tests because of the m e dical sites on the in ter net.
Be careful
 
Sorry chopsticks off to moderation land despite my attempt not to. :(
 
Aly - I have read this post from you on other people's threads, too. Does this mean something you wrote is being read and I must wait for it to show up? I've gathered that's why some people put spaces in the middle of their words. How do you know what words to set of this "moderator?"
 
Hi Chopstick. Our forums have a built in feature that automatically triggers a trip to the moderators when certain words are used. (links too) We don't know what all of them are but as you surmised in your post we've figured out some of them, hence the reason for the spacing and mispelling you've noticed.

ALS has no specific test or biomarker at this time. The discovery process can be a long one for some people. It's basically a process of eliminating everything else. As one of our members says "it can't be ALS until it can't be anything else"

I started with my GP for problems with my right foot (dragging my right clog and some unexplained tripping.) He did a general physical and started the process with bloodwork (many different tests) A 24 hour urine test for heavy metals. My liver enzymes and CPK were elevated so we stopped a medication I had fairly recently started to see if things would improve. They didn't. Next were MRIs of cervical, thoracic, lumbar spine and also the brain. Meanwhile I had been referred to my local neurologist who reviewed everything that had been done and ordered a few more blood tests, a lumbar puncture, and an EMG/NCV. Then I had a muscle biopsy to rule out a few other possibilities. During this time my right leg got progressively weaker. My local Neuro then wanted to try a course of IVIG, but I was ready for a second opinion. Once all this testing was completed, I called Mayo and filled out a questionaire by phone so I could be guided to the appropriate Neurologist. I had an appointment within 2 weeks once it had been reviewed. I gathered up all the reports from all the tests and discs of all the MRIs and carried them to Mayo in FL for my second opinion. The only test Mayo repeated was the EMG/NCV adding an additional part of the body to the test. (This whole process took from about September to May) The Mayo Doc felt confident of the diagnosis at this point. I gave some blood for research, received information about Clinical Trials, and the ALSA and MDA, and a prescription for an AFO for my R foot and encouragement to take the Rilutek that my local Neuro had prescribed. I decided to be followed in a multidiscipline ALS Clinic closer to home and got enrolled in a Clinical Trial. My Clinic Doc did another EMG/NCV, thorough exam etc. before admitting me to his Clinic.

Some of our journeys to diagnosis are a lot shorter, some longer for a variety of reasons. I just wanted to give you an idea of the "rule out" nature of the process bringing one to an ALS diagnosis.

Good luck to you with your decision.
 
Hi Chopstick, my journey towards diagnosis is pretty similar to Deb's, you're not going to get a clear-cut answer in 2 weeks, it's run a few tests, wait for results, rule out some things, run more tests, rule them out, etc. And scheduling the tests back to back is usually not an option.

I think fitzroy's advice is great... start the process at the specialty hospitals in China, see if it's something you do need to be worried about; if it is, you'll probably want to move home to the states and bring your medical records with you. It sounds like everyone here thinks you need to pursue getting a diagnosis, especially in light of your relative having ALS... that said, it does NOT mean you have it, but be sensible and check into it.

Besides new computers get old and outdated pretty quickly, save your money on something more important... your peace of mind.

Good luck, and keep us posted.
 
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