New Symptom
 

When I woke up, I had this strange numbness in my left thumb. It does not have any feel at all. It also feels like a heavy cement. I dont know if this is part of Neuropathy or if its Carpal Tunnel Syndrome. There is nothing new in what I do neither I have over-used this thumb.

Gee, I don't know. I woke up once with a "dead left arm" which took 1/2 hr to wake up! Scared the dickens out of me that did.
But it never happened again.

Now I have a hard calcium/spur deposit on the middle of my left index finger. It is smack dab in between the 1st distal joint, and the middle. Now I do have some Heberden's nodes on my first joints of my right hand. And I recently had a sore thumb joint, that improved with extra magnesium lotion. But this is not at a joint. It first appeared this summer and I put a Salonpas on it for a week, (cut to fit), and then rubbed mag lotion on it every night and it went away. It has come back now and gone away twice since the summer. It is hard and about the size of a dime or slightly smaller, and only painful if I push on it too hard. I don't know what this is. I suspect it is a calcium nodule. I can feel it when I put my fingers all together --it rubs on the middle finger and feels odd. :rolleyes::rolleyes:

Mysterious things sometimes? :confused::confused:

Oh Mrs.D, you can say that again!!!!
All my 8 fingers, except teh two thumbs have osteoarthritis. They are stiff in the morning and joints are becoming bigger that my rings could no longer fit.
I use Epsom It lotion every night. At first, the stiffness was relieved but recently, even with my regular epsom, my fingers are still painful in hte morning.

Well, the numbness is definitely more than 1/2 hour now.:) I soaked in warm water with epsom salt this morning. Gosh, the fun of getting older...I am 51 years old.

one time i woke up in the morning and though i could lift my right arm, i couldnt control lowering it, it would just flop down uncontrollably. scared me pretty good. it went away after a short while and never happened again. hopefully this will be the case for you also.

My arm "event" was over 2 or 3 yrs ago. Just before my neck started to have arthritis too.

I attributed it to "sleeping on it funny". It didn't hurt or tingle either. Just couldn't move it.:o

Now I have this left ankle swelling now and then. Just got over a 2 day swelling event (this is very uncomfortable and somewhat painful). Doctor is stumped.:confused: I don't get it on vacation, and it takes a while being home before it returns. I think it is from climbing stairs (no stairs on vacation). (it is my old surgical foot that had the instep tumor removed 50 yrs ago! ) Rubbing on magnesium lotion seems to fix it too, so far.

I am going to be 66 next month. Some days it seems everything is falling apart.:rolleyes::p

I surely hope so too..... how long before it was gone? Well, as of this writing, the numbness is same.

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.

Advance happy birthday Mrs.D!!!
Its funny you said about "...falling apart". That is exactly how my husband joke about our conditions - "we are falling apart - but dont worry, our two bodies can make one whole person".
On some days, we can laugh about it, but on most days (at least in my case), its a struggle.
On another topic, just a bit of information... I joined a forum on non-tuberculosis mycobacteria. Its a strangely good that inspite of the very strong dosage of antibiotics that we are all taking, I have not encountered anyone who has PN as a side effect of the antibiotics. Some are even taking more combinations and more toxic but no PN. Some of course have the optic neuropathy as a result of the ethambutol. But not the PN as same as in our league. isnt that strange?

Actually, the said thumb still function normally. it can move and has no weakness, just numb and it feels like a hard cement. But, even if its numb, when it touches something, it has an uncomfortable sensation. Its weird. But then, all my sensations are weird!:)

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.

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....

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. ;)

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!!!

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.

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!:)

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.

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.

i hope also that you quickly turn around on your white blood count.

I also hope that you have good news soon. You must be very frightened. Is there a counselor or someone you can talk to about what you are going through?

Susanne,
Yes, I am scared. Also, for the past 4 months, my blood sugar has been going up: July/106; Aug/116 with fasting; Oct/126; Nov/126 (without fasting). I am surprised with these results because I have not changed my diet except that I add a little more calories because having MAC requires me to gain weight. I remember when I had my 2-hour glucose test early this year, Mrs.D mentioned that my 2nd hour result was almost reactive hypo. I am scared because my body seems to be not working well.

Is the counselor same as a psychiatrist?

Thanks Susanne for your reply.

echoes,
Me too - I hope very soon.

Thank you and I hope you are doing fine. So, you have now your current back?

Mary

yes its back and im catching up on everything i fell behind on.
i am suppossed to get a cat scan in the same hospital where i have been getting them 4 times already now in past years. the hospital got flooded and their testing equipment is ruined. millions of dollars in damages for them. the equipment was in the basement and first floor one half block from the east river. everyone i worked with was sent there to do the cat scans pft's, methyl choline challenge test,etc. so that it was done on the same testing equipment for research purposes but i guess that might be out the window now.

below is a flooded subway station to get an idea

I hope you find another hospital where you can have your tests.

I have a friend who lives in New Jersey. Their house was not affective by floods but they had no current for weeks. Her 2 month old baby was cold and she could not boil water for the milk. They had to be temporily moved to a rrelative in Philadelphia. Her husband could not go home for several days as he was stranded in New york.

The picture says it all....:(

A counselor can be the same as a psychiatrist, but that wasn't exactly what I meant. A psychologist, or priest, or just someone who is a friend and very good listener, who doesn't feel compelled to fix every problem (because they can't) but who can really be with you and support you in your grief.
What you are going through- a potentially deadly illness compounded by a painful neuropathic condition, is too much to handle on your own.

My husband is my only real confidant, and frankly he isn't too good at it sometimes. Men always want to either fix things or ignore them. This is okay because my condition is painful and progressive, but I am not in any danger. I probably should see a psychologist to help me cope with the losses and anxiety about the future, instead of expecting so much from him.

In your case I think it is much more urgent that you have someone to help you deal with the fear and grieving over the loss of control you are experiencing over your life. Even with scary diseases like cancer there is a ritual for it, support groups, a treatment protocol that everyone is somewhat familiar with, but what you have is rare and people just cannot know how lonely and frightening it is in the same way they would react to someone with cancer.

Just a wordy way of asking, do you feel heard and understood in your current situation, or would it be wise to talk to someone trained in grief counseling? If I were you I would feel scared and frustrated and need to vent.

I know the feeling about being scared. I keep developing new symptoms too--my most recent being a kind of severe carpal tunnel syndrome. I have to wear braces on my wrists at night so my hands don't go numb. This too is a symptom of many things I'm being tested for. Carpal tunnel is quite common now with computers being so widespread and drugstores sell lots of wrist braces if anyone else has this problem. But my computer use and wrist usage has not increased lately. I'm pretty sure it's another neurological symptom as my hands are also tingling on and off during the day as well now.

I had severe carpal tunnel when my thyroid was low.
(many years ago).

I find today when I have some numbness that a Salonpas patch on the inner wrist (where the tunnel is) will take down inflammation quickly for me. In a day or two. I only have minor flares...playing Bejeweled typically sets me off. But Angry birds do not. Normal computer use does not bother me at all. Gardening or twisting the wrist and hand sewing alot seems to bother me. I had to give up crochet and needlework. Magnesium lotion at night on the inner arms also
helps me quite a bit.

I sometimes still wear my braces at night, but then only very occasionally. Sometimes not even once a month. It depends on my activity level.

Many people mention magnesium lotion. I've never heard of it. Is that a health food store product? I'm making a list here for my shopping trip:

From Health food store:

Marshmallow root tea (for my Interstitial Cystitis)
Organic Apple Cider and Raw Almondsfor my GERD
Magnesium Lotion? from here too?

From Drugstore:

Salonpas patch or other Salycilate patch if not available.
I wonder where I can get Biofreeze for my feet?

Amazon has biofreeze and so does iherb.com

The lotion is called Epsom-IT. The body lotion does not have fragrance but the foot one does. They seem to have the same ingredients otherwise.

I am using CVS Epsom lotion, which they discontinued because of lack of interest. I bought 3 that they had left however, so I am set for quite a while. An 8oz bottle lasts me a long time.

Prices vary from this:
http://www.westmedics.com/search.php...tring=epsom+it
Looks like they might ship out of US too.

and also more expensive on Amazon.

I like the lotion the best. Oral seems to loosen me up too much.
I have a sensitive GI tract.

I apply on my inner arms where the skin is the thinnest. I sleep very well when I do that at night.

Dear Susanne,

Like you, my husband is my only (real) confidante and truest friend. He is very understanding and supportive of my condition. We discuss about what we researched on my condition. He probably understands my condition more than I do. i dont lack in understanding. in fact, that is only my consolation, having a husband a family who understand me. But this closeness somehow gives stress to him. It pains him knowing that I am uncomfortable. The little downside of my situation is -- my family support is "long distance". Most of them is back in my country:) My closest family is in California, while I live in Florida. I have my best friend who also lives in the same area. We are very close but I could not ventilate my frustratioins to her because she is recovering from her Stage 4 breast cancer. Her recovery is another story...

Talking to a priest was my way of coping with the loss of my first husband. I was devastated -- both emotionally and financially -- having been sick for almost a year, in and out of the hospital (mostly in).

THis is another aspect that, if given the choice, I would not want my husband to go through -- who himself took care of her first wife due to a cancer. Now, you may be thinking --whew, what an experience.

Not only the fear Susanne but also the frustration. The frustration of wanting to do more but your body could not do it. We had plans of travelling in 2013, but we may have to contend ourselves with short distance trips. I never anticipated to be sick this early.

Thank you for reading....
This forum has been very helpful to me.

Mrs.D, I think I played most of the Angry Birds games...I dont like though the "Space HD" version. I like the "Seasons" and "Rio" versions. Now, I am starting to enjoy the Pool Mania, Solitaire (its not the convential Solitaire) and the puzzle. Oh boy, when I start playing, I become so into it.

My osteoarthritis stops me from doing beadings. My bead works have been featured in national magazine in our country:) It means it was really nice - ahem. I have flare up of my osteoarthritis these days. My rings could no longer fit in my ring fingers. Its painful and looks awful. But, when you have other health issues, who cares about the looks of your fingers. I will take that any day, just give me a pair of healthy lungs (without the bugs) and healthy nerves!

While watching TV I apply warm compress to my hands and at bedtime, I use Epsom It lotion.

heheheh..

I don't have a smart phone yet...(getting one soon), so I am
stuck on computer. FaceBook has free Angry Birds...
I try to beat my last score on the older ones. They are not the complete set of games you know, and are only a sampler.

I liked the Halloween tournament very much however, with the groaning zombies! LOL

I just love blowing up stuff...this way. I don't like other
role playing games or army or the scarey types though.

Angry Birds is just my speed. I just ordered a cat toy with Angry birds dangling off a stick from Amazon. I think that is mostly for MY benefit! One can stop anytime during Angry Birds so the hand doesn't get so numb for me.

It is nice to know some other adult like them. When I stop in stores it is always the kids hanging around the stuffies.
I bought one little red bird for $3.99 at WalMart. I have a photo of the kitties on my desk...and the bird shows there in my album ;):p

Weezie who does not meow much, but goes WHeeeeee instead, loves it when I play and the white bird who drops the egg is on screen. That sound is just like how Weezie sounds! She sometimes comes next to me and does a little wiggle dance trying to catch her tail, when that white bird is working! It just cracks me up...she can be soooooo funny. She likes the sounds of that game quite a bit.

I think it is really interesting that bejeweled sets off hand pain and angry birds doesn't ! I have them on the iPad, my husband bought it for me last year because I can't use a mouse and I was having trouble holding a book.
My 13 year old son will yell at me if he catches me playing bejeweled because he knows it hurts, my hands claw up from it and even hurt the next day. It is so addictive, though! I should stick to angry birds.

We had a news snip on our news forum about Bejeweled helping to keep the brain sharp as people age. So I tried it...I like the simple version and play it on MSN games.

But boy my hand suffers! 4 games is my maximum with it. My son called me up when Angry Birds showed up on FB ...saying he thought I'd like it. I have become addicted to it.:p I find it defuses my frustrations with pain and some days it is all I have to deflect my discomforts. My arthritis flares up sometimes and really limits my mobility.
My hand never goes numb with Angry Birds but I do get a bit stiff in shoulders sometimes ...:rolleyes:
I try to get 3 stars without the power-ups. I don't like the power-ups too much.

We are getting smart phones (our first) this month, so I will probably get the apps for it. But playing on the big screen seems much more fun IMO.

I wonder why bejewelled causes our fingers to hurt:D

I am so addicted to Angry Birds. My husband would ask when he calls: "are you killing those angry birds again???". Have you experienced that when you fail to hit the target, unconsciously you tilt the kindle or the ipad hoping that it willl help breaks down the targets? I do that unknowingly when I am so much into it. I hate when I fail to hit them and they seem to "smirk" at you.:D

I do the same thing. And yes, they do smirk at you. All of this talk has motivated me to download the updates...

smirk and snort! That is what they do. Doesn't bother me too much.

I play on the computer, large screen. When I shoot I sometimes lean back, to the left or right as the birds fly. Mostly with the more difficult shots. When I do eventually get a new high score, there is alot of YAYYYYYY.... LOL

I've noticed that if you play alot... the games go against you score wise. I get my highest scores in the first 5 or so tries.

If I just keep playing to get a new score, it seems to change your aim of the birds etc...I think the games cheat. Or they discourage you this way so you will leave and not eat up their bandwidth. It might be different on the PC game you own, or on apps.

I just back from AT &T... we now have our first smart phones...
iPhone 4S! Going to our son's for Thanksgiving and he is going to show us how to use them. But hubby and I called each other just now, and they work! Nice sound too. Had to get rid of Sprint...they were down upNorth for 4 weeks! Made me so ANGRY. So since the folks up there all said AT &T was the best carrier now there, that is what we decided. It is our birthday presents to each other!