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Old 10-29-2012, 08:19 AM #11
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Since you are on those antibiotics, I'd report this to the doctor.
Just to be sure it is not the beginning of an antibiotic reaction of some sort. If it persists past a day or two, and seems more permanent, then it should be discussed with the doctor.
I will discuss it with the doctor. My next appointment though is still a long way off.
I read the side efffects of the antibiotics that I am taking, nothing says about numbness....
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Old 10-29-2012, 08:22 AM #12
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I'd call the doctor then. Numbness is the beginning of nerve damage. So it may have another name.

Always report to the doctor even if it is on the phone... they will log that into your file, and have a record of it.

I've edited my post above, so please look at it again.
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Old 10-29-2012, 11:19 AM #13
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No advice, just wanted to say that I am sorry you have another symptom to deal with on top of everything else. I hope that things improve soon.
I have the cement feeling in both my lower legs more often than not. It is amazing to me that they can feel like that and still work at all, as you said of your thumb. I am sure it is a PN symptom.
The "dead arm" feeling was terrifying to me the first few times it happened. Now I more or less expect it several times a week.
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Old 10-30-2012, 10:08 AM #14
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No advice, just wanted to say that I am sorry you have another symptom to deal with on top of everything else. I hope that things improve soon.
I have the cement feeling in both my lower legs more often than not. It is amazing to me that they can feel like that and still work at all, as you said of your thumb. I am sure it is a PN symptom.
The "dead arm" feeling was terrifying to me the first few times it happened. Now I more or less expect it several times a week.
Thanks Susanne.
I can take this numb thumb anytime of the day, its only uncomfortable. But, you are right having "another symptom to deal with on top of everything else" is not welcome.

I think this is a PN symptom. but its odd that it developed in my thumb and not in other parts..... NOT THAT I AM WANTING TO DEVELOP MORE OF IT. PLEASE - NO MORE!!!
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Old 10-30-2012, 10:42 AM #15
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It is possible there is a genetic weakness that is activated by the toxic drugs. The poster on PD forum here posts lots of genetic
information about statin damage being more common in people with certain genes (found with testing). So it stands to reason that genes may be a factor with these drugs too.

Not that many people take your cocktail. Not compared to the millions and millions taking statins. So statistically the reports will be less.

For example if statin side effects like PN were only 1% (and I do think that number is low), and 15,000,000 (this is a typical number seen in articles) people at random are taking the statin, then 150,000 could have this side effect.
http://www.sharecare.com/question/ho...le-take-statin

I personally think the PN effects are higher than 1%, and with more efficient reporting will go over 5% in the future.
So 150,000 people taking the drug is a huge number of people.
Compared to your very low incidence of treatment with your drugs. Ethambutol is not a common drug at all. So the numbers on your forum, and those reporting a low % incidence of side effects with be much much less frequent.

Ethambutol is a treatment for TB also...so if you look at TB forums...you might see more. The numbers of people in the WORLD taking TB drugs is much higher than US as well.
You are right, there are only a relatively few MAC patients. in fact, there are only a few members who joined are in the forum.

In a published paper (written by doctors based on USA), it says that the statistics of MAC patients may not be accurate because the infection is not reportable. I wish it will become reportable because with increased incidences, it will be sound for big pharma and perhaps governtment to fund research to imrpove the treatments. Where we are now, only a few pulmonologists know how to treat the disease properly. unlike TB, MAC is difficult to eradicate. Though, we are not contagious, statistics show that cure is 80%. If you are lucky to be cured, patient is very prone to re-infection with another strain and more aggressive bacteria.
Mrs. D, thank you very much for your information. You are always there for everyone.
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Old 11-05-2012, 07:54 PM #16
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Well, the numbness of my left thumb is still here. Its been more than a week.

The "numbness-hardened cement sensation" is not in the whole thumb, its only at the back of the palm side (sorry, I dont know how to describe the area). The strange thing is even if its numb, its painful when it touches something.
I know somebody online, she was taking ethambutol, she had the same odd sensations on 2-3 fingers. She stopped ethambutol because of optic neuritis. When she was off ethambutol, her odd sensations disappeared.

I am not sure if this is part of my previous/current nerve problems or due to ethambutol. Beats me!
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Old 11-05-2012, 08:12 PM #17
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What is that medicine for?
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Old 11-06-2012, 09:34 AM #18
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What is that medicine for?
Ethambutol is for T.B.

But I am taking it as part of a combination of other antibiotics for mycobactetium avium.
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Old 11-15-2012, 07:33 AM #19
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I guess the numbness in my thumb is here to stay. The good thing is -- it has not gone to other parts. My PN symptoms are the same, and the good thing, it has not gotten worse.

I thought of updating you with my non-PN condition. Yesterday, I got the first hump in my MAC treatment. My WBC has gone down to 2.5 (reference : 4 - 10.5). The doctor will temporarily stopped the Ethambutol and changed the Clarithromycin to Azithromycin. I am so anxious about this change because the combination of the 3 antibiotics works well only when taken together. Actually, all the 3 antibiotics I am taking are all potentials as causing the low WBC but the doctor decided to stop the ethambutol and substitute the clarithromycin with another macrolide.

I hope that my WBC goes up immediately so I can resume my ethambutol. It is very critical that I should take all of the 3 antibiotics. My blood with be monitored on a weekly basis instead of monthly.
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Old 11-15-2012, 07:47 AM #20
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i hope also that you quickly turn around on your white blood count.
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