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ayestee

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Jan 25, 2013
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Learn about ALS
Country
UAE
State
Dubai
City
Dubai
Hi there,
I'm an 18 year old female. For 25 days so far I've been in constant distress. It started with difficulty breathing and severe chest pain. Elevated heart rate was treated with relaxants, and an Echocardiogram showed nothing. Bronchitis was eventually diagnosed and treated with antibiotics, and late on being rushed to emergency for burning chest pain I was asked to get off all medication immediately. On the same day I detected an odd clicking in my throat, like something moving, that I had to push back into place, along with trouble swallowing. For this I saw an ENT who said I had acid reflux, and gave me medication for it, which is the only medication I'm still on. A week back I developed severe, intense headaches, with neckache and back ache, that even painkillers just barely got rid of (I still get shooting pain in my head). Along with this the trouble breathing and swallowing, and chest pain came back. Chest X-ray and spirometry showed a mild ventilatory defect. Over the last few days I've gotten constantly weaker and have trouble doing ordinary tasks. I can feel twitches in random areas of my body. My limbs are weak but I can still write and type (with wrist pain). I've always been thin but I've lost a couple kgs over the past few days. My head and body is constantly tingling. Neuro exam was fine and I'm scheduled for an MRI next week. Could this be respiratory onset ALS? I've read that unlocalized twitching could be a symptom. Please, I'm really scared and would appreciate a reply. My insurance may not apply to hospitals by next week and I'll be helpless. No one wants to listen to me. If you took time to read and reply, thank you.
 
No, it does not even sound close to ALS.
 
As always Sadiemae is absolutely correct.

Isn't healthcare free in Dubai for all residents?
 
Thank you so much for replying ! :) I guess it's too much googling. I just can't seem to find another explanation that would include all the symptoms (except the headaches) and even now it's in the back of my mind as my left arm is horribly cramped. I've had cramps on my left leg and right arm so far with spasms in my right leg and now I'm thinking maybe it's BFS, maybe something else. It's just hard to get it out of my head since I can barely do daily activities now - all this in the space of a month.
And yes, it is free if you're a UAE national, if I remember right, and I'm Indian so unfortunately doesn't apply to me :/
 
ALS is fast, but not in "all those different places in your body" in a month fast, if you get my drift. It also isn't anything like what you described, so get that out of your mind. It also doesn't sound like BFS - that causes things like shallow breathing, but not actual breathing defects. Your situation is quite outside of our group's purview, honestly.

That said, I do hope your docs find out what is going on, and quickly.
 
Tokahfang -
I think what the doctor essentially meant was shallow breathing, just using very clinical terms. To me it feels like my chest is just too weak all the time, and I'm too tired to even take a deep breath. Thank you anyway for the reassurance ! :)
As an update, I've also been researching the effects of Cipro which can cause similar symptoms and which I took a couple weeks back... I did ask whether Cipro and ALS are related on another thread, but no idea on that yet.
 
Hi Ayestee

I'm sorry you are feeling so awful. There is no known link of any kind between cipro and ALS; there is, however, no doubt that cipro can cause a number of the symptoms you describe. And, unlike ALS, it can do so very quickly which is why the FDA in the US puts it at the top of its warnings to patients about cipro:

http://www.fda.gov/downloads/Drugs/DrugSafety/UCM246794.pdf

I think you should read it in full so you can see for yourself that this really does happen; I suspect that this is why the ER doctors stopped all of your medications immediately, even if they did not explain it to you at the time. Patients can rupture tendons for several months after taking it, even if they have no initial problems with it so it's not a huge surprise that you are still feeling awful.

As I'ved noted in responding to Paul it took months for the problems in my hand and arms to clear, and I was wearing splints; my doctors told me never to take cipro or any of the fluoroquinalones again and that it may well flare again in the future, and they were right about that. Fortunately it was very mild.

I'm not a doctor but if I were in your shoes I would not be worrying about ALS; I think you should let go of that and focus instead on what can be done to ameliorate your symptoms. It might help if you printed out the FDA document to discourage any doctor from telling you that cipro can't do this; it can, and it does.

Part of the problem is that you should never have been prescribed cipro in the first place, as noted by the FDA; you are at very high risk because of your age, and just about the only possible justification for giving it to someone of your age is that you would otherwise die. That certainly doesn't include bronchitis, which is frequently viral in origin.

If you can get the pain, the cramps and all the rest of it under control then your doctors can explore whether there may be an underlying condition they haven't spotted yet. Obviously all I can do is comment from my personal experience of a cipro disaster reaction and point you towards the scientific advice about it. My doctors were entirely justified in prescribing cipro for me since my lungs are colonised by a 'superbug', but unfortunately some doctors prescribe antibiotics as if they were candy.

I hope that this is of some help, and wish you the best of luck...
 
Hi Ayestee

I have responded but it's gone into moderation so they can check the link; I would normally quote in the text of my reply but the FDA document runs to 11 pages...
 
Grateful, thank you for the link, I've been doing some research into Cipro toxicity since and I seem to be matching symptoms somewhat....
Back here,however, a month and 15 days my breathing has shown very little improvement, if any. I had severe chest pain at one point which was alleviated with homeopathy, and mostly I'm back here because yesterday I tried to swallow a piece of food, possibly a bell pepper, which might've been slightly unchewed. It got stuck in my throat and it took several swallows to get it down. My twitches haven't gone anywhere and in fact, now seem to be focused on my chest and stomach, sometimes my limbs. I was asked to practice meditation and the first thing the texcher told me was that im using my chest muscles to breathe... And I feel I'm having troubles doing abdominal breathing. I'm coughing on swallowing food as well as while breathing now. So im back to being horribly scared and I know I must seem irritating but again,any help?
 
Yup, sounds like acid reflux to me. Listen to your doctor. Good luck!
 
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