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Idiopathic PN 05-05-2012 03:31 PM

Shortness of Breath
 
I have been looking up on the internet about emphysema/COPD. For those who may have read my other posts, I am having problems with shortness of breath, both at rest and exertion. I dont have cough and wheezing is very very very rarely. I dont smoke. (My appointment with a pulmonologist is still way far off.)

I encountered this symptom checker on the net. It asks about your symptoms and at the end of the process will tell you about your "possible" problem. In my case, since I dont have any other symptoms typical of emphysema, it says among other things:

Another cause of shortness of breath is a nerve or muscle disease that weakens the diaphragm and chest muscles. With a nerve or muscle disease, there will almost always be other areas of the body involved. For example, you might notice that your legs or arms are weak or you may have numbness or tingling.

http://symptomchecker.about.com/od/w...etofinish..htm

Is there anyone who has a similar symptom like mine? I have an asthma but I have not had an attack for a long long time. I am not sure th ough, if this shortness of breath is asthma related.

I am concerned about emphysema because in 1988, I also had similar shortness of breath, a pulmonologist diagnosed me with emphysema based on my chest x-ray. She scared me to death. I went to another pulmonologist and she laughed at my earlier diagnosis. She said that I have normal lungs based on a pulmonary function test (PFT). I had a lung CT scan in 2011 and another PFT. My scan was normal as well as the PFT. The pulmo commented though that my FEV1 has reduced a little.

I do not know if my shortness of breath (which has been on going for 2 years now) is related to my PN or lungs.

Thank you in advance for sharing with me your inputs and experiences.

melon 05-05-2012 09:07 PM

Quote:

Originally Posted by Idiopathic PN (Post 876492)
I have been looking up on the internet about emphysema/COPD. For those who may have read my other posts, I am having problems with shortness of breath, both at rest and exertion. I dont have cough and wheezing is very very very rarely. I dont smoke. (My appointment with a pulmonologist is still way far off.)

I encountered this symptom checker on the net. It asks about your symptoms and at the end of the process will tell you about your "possible" problem. In my case, since I dont have any other symptoms typical of emphysema, it says among other things:

Another cause of shortness of breath is a nerve or muscle disease that weakens the diaphragm and chest muscles. With a nerve or muscle disease, there will almost always be other areas of the body involved. For example, you might notice that your legs or arms are weak or you may have numbness or tingling.

http://symptomchecker.about.com/od/w...etofinish..htm

Is there anyone who has a similar symptom like mine? I have an asthma but I have not had an attack for a long long time. I am not sure th ough, if this shortness of breath is asthma related.

I am concerned about emphysema because in 1988, I also had similar shortness of breath, a pulmonologist diagnosed me with emphysema based on my chest x-ray. She scared me to death. I went to another pulmonologist and she laughed at my earlier diagnosis. She said that I have normal lungs based on a pulmonary function test (PFT). I had a lung CT scan in 2011 and another PFT. My scan was normal as well as the PFT. The pulmo commented though that my FEV1 has reduced a little.

I do not know if my shortness of breath (which has been on going for 2 years now) is related to my PN or lungs.

Thank you in advance for sharing with me your inputs and experiences.

cant type much - but yes I had it ,and still have it to this day , like you havent had asthma in yrs though Im disabled now too.

can you hold your breath at all ,or do anything like controlled breathing / meditation ?

m

zygopetalum 05-05-2012 10:31 PM

I don't think you would even notice a slightly reduced FEV1, everyone loses a little pulmonary function as they age so you are probably fine but you can verify that with your upcoming appointment.

I noticed you had a thread about anxiety, that can really cause shortness of breath too. I was wondering how long you have been on Synthyroid and how long its has been since you had your thyroid levels checked? Mrs D probably knows a lot more about that than I do but I think having your thyroid level too high can cause anxiety, does your heart race? Or you might have something interacting with something else, I noticed Neurontin can rarely cause shortness of breath and anxiety too but I don't know if its common enough to consider.

Hope you figure it out.
judi

Dr. Smith 05-05-2012 11:00 PM

Quote:

Originally Posted by Idiopathic PN (Post 876492)
I do not know if my shortness of breath (which has been on going for 2 years now) is related to my PN or lungs.

Not to scare you, but shortness of breath can also indicate possible heart trouble. Googling: peripheral neuropathy shortness breath mentions that, depending on the nerve/s involved in the PN, other symptoms (like pain) can be masked. Might be prudent to at least review (Google: ) warning signs heart attack women and/or give your PCP a call to check you out.

Doc

Idiopathic PN 05-06-2012 07:05 PM

Thank you for all your replies ----

Melon : I try to meditate. I have several guided meditations and calming meditation music, but everytime I listen, I coould not concentrate -my mind will fly elsewhere.

Zygopetalum : I am on Synthroid since 2007 after I had the total thyroidectomy. I had nodules which were found benign (thank God!). I discovered my TSH was high last November 2011 (a month after I had the PN symptoms). But, since December 2011 until April 2012, my TSH was low. My last test which was last week, my TSH was already normal. My doctor does not think that my PN is caused by my t hyroid problem. (Actually, I dont know what to believe now....:confused:) Yes, I had a thread about my anxiousness. I know that anxiety can cause shortness of breath, but you know when your body is in distress, you thread the path of fear - which I know is not good. I am trying to rule out the cause of my shortness of breath by process of elimination. I am not trying to diagnose myself, but I need to have some peace of mind between now and my appointment with the pulmo.

Its a relief to know that a reduced FEV1 will not affect breathing that much.

Doc : I hope this is not heart related. I had my EKG, treadmill stress test in 2011, my heart is normal, except for a Mitral Valve Prolapse, which the cardiologist assured me that its nothing to worry about.

I read that the nerve affecting the motor can cause the shortness of breath. however, my neurologist said that the strength of my muscle is okay. With this finding, is it possible that my shortness of breath can be a resuslt of a motor neuropathy?

Thank you all!

Idiopathic PN 06-11-2012 08:26 PM

An update on the shortness of breath....
 
I saw a pulmonologist today. He gave me another PFT in his clinic. The breathing test showed some decreased airflow compared to the 2011 PFT. Although, the doctor said that the result is still within the normal level.(I guess I mentioned in my earlier post that my 2011 PFT had also a reduction from 2010 PFT.) So, it seems there is a trend in the decrease of airflow.

He also saw in my 2011 CT scan two small scars in my lower right lung which may have been caused by t.b. I had in 2000 (ileocecal T.B.). Just to make sure --- he requested a follow up CT scan.

He gave me some tests which may have some effects on the lungs:

1. IGA
2. SPE
3. ANA
4. Anti-DNA
5. RA
6. ANCA -P+C
7. Anti-GBM
8. Sjorgren's
9.Anti-JO Antibody

I already had some of these tests, but it will not hurt to take them again.

This is the thing I was trying to avoid - inhaler! He put me on Symbicort due to a mild asthma. He said the usual "script" on the inhalers - "just localized unlike oral steroid".

Just like most posters, I have been trying mightily to avoid anything to aggravate the nerves, especially now that I think my symptoms are progressing.

I guess I just have to bite the bullet this time.

I will appreciate though any special precautions/ideas.

Thank you.

echoes long ago 06-11-2012 09:10 PM

what were your FEV1 numbers?

Idiopathic PN 06-12-2012 09:20 AM

Quote:

Originally Posted by echoes long ago (Post 888120)
what were your FEV1 numbers?

Hi echoes,
I am not sure which numbers to post - so, I will just write all the numbers opposite the FEV1. Here they are:

2008
Ref : 2.77
Pre : 2.56
Pre% : 93
Post : 2.63
Post% : 95
%Change: 3

2011
Ref : 2.63
Pre : 2.00
Pre% : 71
Post : 1.93
Post% : 68
%Change: -4

2012
Ref : 2.79
Pre : 1.66
Pre% : 59
Post : 1.76
Post% : 63
%Change : 6

I hope you could provide me with more enlightenment on these numbers.

Thank you in advance.

echoes long ago 06-12-2012 10:38 AM

fev1 is forced expiratory volume or the amount of air you can forcibly exhale in one second. yours has been dropping over the last 4 years at a greater rate than would be expected due to age. fev1 numbers do go down normally as you get older but yours are above that. at 59% of expected fev1 you are now in the moderately obstructed category. Your 2011 numbers showed you to be mildly obstructed.Expected results are based on age, weight, height and believe or not ethnicity and yours are 59% of what would be expected for your age, weight, height and ethnicity in a normal person.
do you have your FVC numbers and fev1/fvc ratio?

my fev1 has gone down from 115% of expected in 2001( i was a runner) to 48% now just to give you one example of progression.

Idiopathic PN 06-12-2012 12:10 PM

The FEV1/FVC are as follows:

2008:
Ref : 76
Pre : 87
Post : 96

2011:
Ref : 83
Pre : 77
Post : 75

2012:
Ref : 83
Pre : 73
Post : 72

I am now 51 years old, 5'6 at 113-114lbs (Asian).

Doctor has put me on symbicort.

May I ask, what is your lung problem?

Thank you so much echoes. I appreciate your inputs.
Quote:

Originally Posted by echoes long ago (Post 888254)
fev1 is forced expiratory volume or the amount of air you can forcibly exhale in one second. yours has been dropping over the last 4 years at a greater rate than would be expected due to age. fev1 numbers do go down normally as you get older but yours are above that. at 59% of expected fev1 you are now in the moderately obstructed category. Your 2011 numbers showed you to be mildly obstructed.Expected results are based on age, weight, height and believe or not ethnicity and yours are 59% of what would be expected for your age, weight, height and ethnicity in a normal person.
do you have your FVC numbers and fev1/fvc ratio?

my fev1 has gone down from 115% of expected in 2001( i was a runner) to 48% now just to give you one example of progression.


echoes long ago 06-12-2012 12:39 PM

i dont know why your pulmonary doctor told you your results were normal. anything below 80% of predicted is below normal. Both your fev1 and fev/fvc ratio are significantly below 80%. 59% and 73% respectively. 59 % is moderately obstructed as i wrote before. shortness of breath is a common symptom with this number. an fev1/fvc ratio below 70% is a basis for a diagnosis of chronic obstructive pulmonary disease. you are inching closer to that number, maybe he or she means that you arent there yet for a firm diagnosis of chronic obstructive pulmonary disease but you are definitely not normal and are obstructed.

i have chronic bronchitis and asthma (chronic obstructive pulmonary disease /reactive airway disease) since 2001. i also have numerous nodules on my lungs which i have to keep track of via cat scans to make sure they arent growing.
if you have insurance, i would ask for a prescription for a nebulizer for home for those times you are short of breath. it has saved me from many a scary and uncomfortable experience not to mention trips to the Emergency room.

Idiopathic PN 06-12-2012 01:53 PM

Quote:

Originally Posted by echoes long ago (Post 888274)
i dont know why your pulmonary doctor told you your results were normal. anything below 80% of predicted is below normal. Both your fev1 and fev/fvc ratio are significantly below 80%. 59% and 73% respectively. 59 % is moderately obstructed as i wrote before. shortness of breath is a common symptom with this number. an fev1/fvc ratio below 70% is a basis for a diagnosis of chronic obstructive pulmonary disease. you are inching closer to that number, maybe he or she means that you arent there yet for a firm diagnosis of chronic obstructive pulmonary disease but you are definitely not normal and are obstructed.

i have chronic bronchitis and asthma (chronic obstructive pulmonary disease /reactive airway disease) since 2001. i also have numerous nodules on my lungs which i have to keep track of via cat scans to make sure they arent growing.
if you have insurance, i would ask for a prescription for a nebulizer for home for those times you are short of breath. it has saved me from many a scary and uncomfortable experience not to mention trips to the Emergency room.

Thank you echoes.
I find it odd beçause I don't have cough, colds and the wheezing comes on very rarely. All along I thought it just to be stress. I never had the kind of attack I used to have when I had the asthma when I was younger. Oh my, with all the neurological pain and shortness of breath with in between bloating and constant arthritic pain, I don't know where to put myself.

Do u think symbicort is a wise thing to do considering my nerve problems?

mrsD 06-12-2012 02:33 PM

For what it is worth.... there are drugs that can lower breathing capacity... that gabapentin for one. Also the family of beta blockers will do it.

Lowered ability to breathe, will lower oxygen to your body, and therefore also your nerves will suffer.

I'd try the inhaler...the doctor probably wants to see if airway inflammation is the the culprit. If it does not help, that tells the doctor something, as well.

zygopetalum 06-12-2012 03:59 PM

I thought I should jump in as I'm the one usually complaining about my meds. :D. I know what the cut off points for different stages of COPD, but I'm not so good at interpreting the numbers so will defer to Echos. It might be informative for you to post the results and your questions at the COPD International Forum as well, there are people there who know a lot about the progression of the disease. They don't know much about neuropathy though.

I think you should probably try the medication too, like Mrs D said, low O2 levels aren't good for your nerves either. Your sex and ethnicity may protect you from some of the SE, we Caucasion females are the most prone. For some reason the meds have just become 'proinflammatory' for me, I got quite a bit of exercise yesterday and had very little pain, I took a big shot of steroid inhaler later in the evening and everything started to hurt. I've seen a very few women on the forums who may have the same thing but I have never seen any posts from men.

I'd like to hear how you do.

judi

mrsD 06-12-2012 04:11 PM

Asians do have problems with genetics.... they have reduced
liver enzymes for some drugs...like Crestor.
Also alcohol is difficult for many Asians.

http://www.healthanddna.com/healthca...enotyping.html

http://medicine.iupui.edu/clinpharm/ddis/table.aspx
The 2C9 pathway may be impaired in some Asian patients.
Notice the NSAIDs which you cannot tolerate are there in that list.

I wish I had known this before, that you are Asian. How your genetic makeup handles drugs may be a key to some of your problems.

echoes long ago 06-12-2012 04:56 PM

ideopathic pn i dont know anything about symbicort and its relation to pn and nerves in general.

i dont feel that the medicines that i have been taking for asthma have contributed much to the progression of my pn. i actually developed pn at the same time as i first started coughing and wheezing and developing numerous respiratory infections. so that pre dates the medicine for asthma. ive been hospitalized for asthma a number of times for a week or more. ive had episodes of not being able to take more than a half breath without a coughing fit for over 12 weeks. so if i didnt take care of my asthma aggressively years ago im sure i would be dead.

i know how you feel with the multiple problems and feeling overwhelmed at times.

Idiopathic PN 06-12-2012 07:33 PM

Quote:

Originally Posted by zygopetalum (Post 888313)
I thought I should jump in as I'm the one usually complaining about my meds. :D. I know what the cut off points for different stages of COPD, but I'm not so good at interpreting the numbers so will defer to Echos. It might be informative for you to post the results and your questions at the COPD International Forum as well, there are people there who know a lot about the progression of the disease. They don't know much about neuropathy though.

I think you should probably try the medication too, like Mrs D said, low O2 levels aren't good for your nerves either. Your sex and ethnicity may protect you from some of the SE, we Caucasion females are the most prone. For some reason the meds have just become 'proinflammatory' for me, I got quite a bit of exercise yesterday and had very little pain, I took a big shot of steroid inhaler later in the evening and everything started to hurt. I've seen a very few women on the forums who may have the same thing but I have never seen any posts from men.

I'd like to hear how you do.

judi

Thank you judi.
Sorry, what is SE?

zygopetalum 06-12-2012 07:35 PM

My mistake, I knew about the connection between Asian ethnicity and 2C9 but I was just looking at the 3A4 for the steroid. According to what I see the formoterol goes through 2D6, 2C19, 2C9. and 2A6. I don't know if that means it can be metabolized by any of them or if its sequential, the product of the first is acted on by the second, etc.

judi

echoes long ago 06-12-2012 07:46 PM

SE= side effects

Idiopathic PN 06-12-2012 07:48 PM

Quote:

Originally Posted by mrsD (Post 888314)
Asians do have problems with genetics.... they have reduced
liver enzymes for some drugs...like Crestor.
Also alcohol is difficult for many Asians.

http://www.healthanddna.com/healthca...enotyping.html

http://medicine.iupui.edu/clinpharm/ddis/table.aspx
The 2C9 pathway may be impaired in some Asian patients.
Notice the NSAIDs which you cannot tolerate are there in that list.

I wish I had known this before, that you are Asian. How your genetic makeup handles drugs may be a key to some of your problems.

Mrs.D, this is too complicated to comprehend for me:D

I will re-read the whole thing ..... thank you:hug:

Idiopathic PN 06-12-2012 07:52 PM

Quote:

Originally Posted by echoes long ago (Post 888361)
SE= side effects

Oh, thank you!!!

Idiopathic PN 06-12-2012 08:05 PM

Quote:

Originally Posted by echoes long ago (Post 888274)
i dont know why your pulmonary doctor told you your results were normal. anything below 80% of predicted is below normal. Both your fev1 and fev/fvc ratio are significantly below 80%. 59% and 73% respectively. 59 % is moderately obstructed as i wrote before. shortness of breath is a common symptom with this number. an fev1/fvc ratio below 70% is a basis for a diagnosis of chronic obstructive pulmonary disease. you are inching closer to that number, maybe he or she means that you arent there yet for a firm diagnosis of chronic obstructive pulmonary disease but you are definitely not normal and are obstructed.

i have chronic bronchitis and asthma (chronic obstructive pulmonary disease /reactive airway disease) since 2001. i also have numerous nodules on my lungs which i have to keep track of via cat scans to make sure they arent growing.
if you have insurance, i would ask for a prescription for a nebulizer for home for those times you are short of breath. it has saved me from many a scary and uncomfortable experience not to mention trips to the Emergency room.

The doctor saw 2 small scars in one of my lungs. he said it may have been from the ileocecal T.B. i had in 2000. I will have another CT scan when I get the schedule.
Are there certain exercise that we can do to prevent the progression? or supplements or food?

Thank you echoes!

Idiopathic PN 06-12-2012 08:09 PM

Quote:

Originally Posted by mrsD (Post 888291)
For what it is worth.... there are drugs that can lower breathing capacity... that gabapentin for one. Also the family of beta blockers will do it.

Lowered ability to breathe, will lower oxygen to your body, and therefore also your nerves will suffer.

I'd try the inhaler...the doctor probably wants to see if airway inflammation is the the culprit. If it does not help, that tells the doctor something, as well.

Oh, I just remember, when the staff assistant got the oxygen level (the one they clip in your finger), mine was 99. She did not comment, nor I asked if that was normal. I used to be so inquisitive about results and numbers...I dont know...:eek:

zygopetalum 06-12-2012 08:29 PM

I'm sorry, we must have been posting at the same time and I didn't see your question re: SE. Exercise is good because fit muscle uses oxygen more efficiently. I take D3 which is supposed to be good for your lungs. there was some research with probiotics and rats that looked promising but was not replicated or something, I think its good to take them anyhow, it won't hurt and may help in some way they haven't discovered.

99% )2 saturation is normal, they prescribe oxygen if you drop below 88% consistantly but you really want to try to stay at least 92-94% .

judi

echoes long ago 06-12-2012 08:42 PM

if you have trouble doing aerobic exercizes, an incentive spirometer may help you with your shortness of breath. Incentive spirometers are those things they give you in the hospital that you blow into to prevent pneumonia. you can give your lungs a decent workout with it.

http://en.wikipedia.org/wiki/Incentive_spirometer

Idiopathic PN 06-12-2012 10:17 PM

Quote:

Originally Posted by echoes long ago (Post 888377)
if you have trouble doing aerobic exercizes, an incentive spirometer may help you with your shortness of breath. Incentive spirometers are those things they give you in the hospital that you blow into to prevent pneumonia. you can give your lungs a decent workout with it.

http://en.wikipedia.org/wiki/Incentive_spirometer

I can tolerate doing exercises. I walk at least 30mins a day (but just relatively slow walking due to my painful feet), then I rest my feet for a while, then do the stationary bicycle for another 30 minutes. When I do this, I dont gasp for air.

How can you be tested for Alpha-1 Antitripsin?
Thank you.

Idiopathic PN 06-12-2012 10:23 PM

Quote:

Originally Posted by zygopetalum (Post 888374)
I'm sorry, we must have been posting at the same time and I didn't see your question re: SE. Exercise is good because fit muscle uses oxygen more efficiently. I take D3 which is supposed to be good for your lungs. there was some research with probiotics and rats that looked promising but was not replicated or something, I think its good to take them anyhow, it won't hurt and may help in some way they haven't discovered.

99% )2 saturation is normal, they prescribe oxygen if you drop below 88% consistantly but you really want to try to stay at least 92-94% .

judi

I take D3 too at 2000mg - 3x a week. I also take Calcium at 750mg (it has D3 too) at 4x a week for my osteopenia.
I am taking Kefir for the probiotics.
What is your lung condition? I am sorry if I asked you this question already? My memory is becoming really bad - i blame it to Gabapentin (or maybe simply age:D)

Thank you.

echoes long ago 06-13-2012 08:54 AM

From Wikipedia http://en.wikipedia.org/wiki/Alpha_1-antitrypsin

Analysis
As protein electrophoresis is imprecise, A1AT is analysed by isoelectric focusing (IEF) in the pH range 4.5-5.5, where the protein migrates in a gel according to its isoelectric point or charge in a pH gradient.

Normal A1AT is termed M, as it is migrates toward the center of such an IEF gel. Other variants are less functional, and are termed A-L and N-Z, dependent on whether they run proximal or distal to the M band. The presence of deviant bands on IEF can signify the presence of alpha 1-antitrypsin deficiency. Since the number of identified mutations has exceeded the number of letters in the alphabet, subscripts have been added to most recent discoveries in this area, as in the Pittsburgh mutation described above.

As every person has two copies of the A1AT gene, a heterozygote with two different copies of the gene may have two different bands showing on electrofocusing, although heterozygote with one null mutant that abolishes expression of the gene will only show one band.

In blood test results, the IEF results are notated as in PiMM, where Pi stands for protease inhibitor and "MM" is the banding pattern of that patient.

Other detection methods include use of enzyme-linked-immuno-sorbent-assays in vitro and radial immunodiffusion.

Alpha 1-antitrypsin levels in the blood depend on the genotype. Some mutant forms fail to fold properly and are, thus, targeted for destruction in the proteasome, whereas others have a tendency to polymerise, being retained in the endoplasmic reticulum. The serum levels of some of the common genotypes are:

PiMM: 100% (normal)
PiMS: 80% of normal serum level of A1AT
****: 60% of normal serum level of A1AT
PiMZ: 60% of normal serum level of A1AT
PiSZ: 40% of normal serum level of A1AT
PiZZ: 10-15% (severe alpha 1-antitrypsin deficiency)
PiZ is caused by a glutamate to lysine mutation at position 342
PiS is caused by a glutamate to valine mutation at position 288
Other rarer forms have been described; in all there are over 80 variants.



http://en.wikipedia.org/wiki/Isoelectric_focusing

Idiopathic PN 06-13-2012 12:13 PM

Whew, that was a lot to understand! Back in my country I mentioned this to my pulmonologist but she shrugged me off by saying:"you are ASian, you are not predisposed to it". I'm starting to doubt it now. I will mention it again to my new doctor.

Thank you.
Quote:

Originally Posted by echoes long ago (Post 888482)
From Wikipedia http://en.wikipedia.org/wiki/Alpha_1-antitrypsin

Analysis
As protein electrophoresis is imprecise, A1AT is analysed by isoelectric focusing (IEF) in the pH range 4.5-5.5, where the protein migrates in a gel according to its isoelectric point or charge in a pH gradient.

Normal A1AT is termed M, as it is migrates toward the center of such an IEF gel. Other variants are less functional, and are termed A-L and N-Z, dependent on whether they run proximal or distal to the M band. The presence of deviant bands on IEF can signify the presence of alpha 1-antitrypsin deficiency. Since the number of identified mutations has exceeded the number of letters in the alphabet, subscripts have been added to most recent discoveries in this area, as in the Pittsburgh mutation described above.

As every person has two copies of the A1AT gene, a heterozygote with two different copies of the gene may have two different bands showing on electrofocusing, although heterozygote with one null mutant that abolishes expression of the gene will only show one band.

In blood test results, the IEF results are notated as in PiMM, where Pi stands for protease inhibitor and "MM" is the banding pattern of that patient.

Other detection methods include use of enzyme-linked-immuno-sorbent-assays in vitro and radial immunodiffusion.

Alpha 1-antitrypsin levels in the blood depend on the genotype. Some mutant forms fail to fold properly and are, thus, targeted for destruction in the proteasome, whereas others have a tendency to polymerise, being retained in the endoplasmic reticulum. The serum levels of some of the common genotypes are:

PiMM: 100% (normal)
PiMS: 80% of normal serum level of A1AT
****: 60% of normal serum level of A1AT
PiMZ: 60% of normal serum level of A1AT
PiSZ: 40% of normal serum level of A1AT
PiZZ: 10-15% (severe alpha 1-antitrypsin deficiency)
PiZ is caused by a glutamate to lysine mutation at position 342
PiS is caused by a glutamate to valine mutation at position 288
Other rarer forms have been described; in all there are over 80 variants.



http://en.wikipedia.org/wiki/Isoelectric_focusing


mrsD 06-13-2012 01:46 PM

Incidence: Alpha 1-antitrypsin


http://www.ncbi.nlm.nih.gov/pubmed/12426287
Quote:

CONCLUSIONS:

The database presented indicates that in a total population of 4.4 billion in the countries surveyed worldwide, there are at least 116 million carriers (PiMS and PiMZ) and 3.4 million deficiency allele combinations (****, PiSZ, and PiZZ). Furthermore, this database demonstrates that AAT deficiency is found in various populations of African blacks, Arabs and Jews in the Middle East, whites in Australia/New Zealand, Europe, and North America, central Asians, far east Asians, and southeast Asians. These data demonstrate that AAT deficiency is not just a disease of whites in Europe, but that it affects individuals in all racial subgroups worldwide. In addition, AAT deficiency may be one of the most common serious hereditary disorders in the world.

zygopetalum 06-13-2012 02:00 PM

I think it would be worthwhile for you to have the test as well.

I got COPD from smoking, I was diagnose at the mild stage around 10 years ago. I contuinued to smoke and developed lung cancer a couple of years later. They caught it very early and were able to remove a lobe of my lung and get it all but my lung tore after surgery and I ended up with a lot less lung capacity.

You are really in pretty good shape if you can ride the bike for 30 minutes.

judi

Idiopathic PN 06-13-2012 02:35 PM

Quote:

Originally Posted by zygopetalum (Post 888561)
I think it would be worthwhile for you to have the test as well.

I got COPD from smoking, I was diagnose at the mild stage around 10 years ago. I contuinued to smoke and developed lung cancer a couple of years later. They caught it very early and were able to remove a lobe of my lung and get it all but my lung tore after surgery and I ended up with a lot less lung capacity.

You are really in pretty good shape if you can ride the bike for 30 minutes.

judi

Thanks Judi.
The bicycle I am referring to is the stationary bicycle and Ido moderately slow pedalling due to my painful feet.
If not only for my painful feet, I can still walk.

Idiopathic PN 06-13-2012 02:36 PM

Quote:

Originally Posted by mrsD (Post 888559)
Incidence: Alpha 1-antitrypsin


http://www.ncbi.nlm.nih.gov/pubmed/12426287

Thank you Mrs.D!:hug:

I am really so depressed. I dont want to go that route.... I am trying not to.

Idiopathic PN 06-14-2012 06:52 AM

When the pulmo prescribed the Symbicort, he gave me a free "AeroChamber Flow-Vu". It says on the product - anti-static valved holding chamber, but its really just a mouthpiece which you can use with the metered dose inhaler(MDI). Instead of inhaling it directly from the MDI, you attached the chamber to the MDI.

This additional apparatus makes me uncomfortable. But, I can tolerate it if it is really necessary.

My question : is the chamber necessary? does it help the patient inhaled better? does it protect the throat from certain particles? does any of you use this? do you find it helpful/useful?

Thank you so much.

mrsD 06-14-2012 07:05 AM

The chamber is useful... people tend to have poor inhaler technique.

If you have a Turbohaler? here is a video showing how to use it:

http://www.youtube.com/watch?v=sJdG-c6y84I
This type is self actuated, meaning you have to suck/inhale the dose.

An Aerochamber is for volatilized, medications, that have a propellant. If you have the self actualized turbohaler type, the Aerochamber won't work.

Which do you have? Technique for volatilized inhalers is different from a turbohaler device.

Idiopathic PN 06-14-2012 08:18 AM

Quote:

Originally Posted by mrsD (Post 888737)
The chamber is useful... people tend to have poor inhaler technique.

If you have a Turbohaler? here is a video showing how to use it:

http://www.youtube.com/watch?v=sJdG-c6y84I
This type is self actuated, meaning you have to suck/inhale the dose.

An Aerochamber is for volatilized, medications, that have a propellant. If you have the self actualized turbohaler type, the Aerochamber won't work.

Which do you have? Technique for volatilized inhalers is different from a turbohaler device.


Here is the picture of the Symbicort 160/4.5:

http://www.symbicorttouchpoints.com/...mbicort-dosing

And, this is the picture of the chamber I was referring to:

http://frx.com/pi/AeroChamberPlusFlo...thpiece_PI.pdf

Thank you Mrs.D!:hug:

mrsD 06-14-2012 08:28 AM

So that looks like a propellant type inhaler delivery system.

How to use an Aerochamber:
http://www.youtube.com/watch?v=a54MA...eature=related

If you squirt the contents of the inhaler properly you will not deposit the
mist on your throat or tongue. If you use the inhaler in the wrong way, most of the drugs will not get into the lungs. The drugs will then get absorbed into your body thru the mouth mucosa. This is not good for
the steroid portion of the inhaler.

Always rinse your mouth and spit, after using inhalers.

Here is how to use an inhaler properly...
http://www.mckinley.illinois.edu/han...haler_use.html
It is best not to put it in the mouth at all IMO. Esp for steroid types.

Idiopathic PN 06-14-2012 02:28 PM

Quote:

Originally Posted by mrsD (Post 888772)
So that looks like a propellant type inhaler delivery system.

How to use an Aerochamber:
http://www.youtube.com/watch?v=a54MA...eature=related

If you squirt the contents of the inhaler properly you will not deposit the
mist on your throat or tongue. If you use the inhaler in the wrong way, most of the drugs will not get into the lungs. The drugs will then get absorbed into your body thru the mouth mucosa. This is not good for
the steroid portion of the inhaler.

Always rinse your mouth and spit, after using inhalers.

Here is how to use an inhaler properly...
http://www.mckinley.illinois.edu/han...haler_use.html
It is best not to put it in the mouth at all IMO. Esp for steroid types.

I was given a run through in teh clinic by the medical assistant how to use both the chamber and the metered dose inhaler. Just thinking if the chamber is really necessary. I find uncomfortable using it. It seems to me that them medicines are stuck in chamber (I am not sure of this th ough....).

Thank you for the links Mrs.D:hug: I learned from the link that its okay to inhale more than one to complete the inhalation.

Idiopathic PN 06-14-2012 02:30 PM

I went back to the clinic yesterday and have the Alpha1-Antritypsin test added.

Thank you Mrs.D and Judi.:hug:

mrsD 06-14-2012 02:58 PM

The chamber is for children, or elderly with impaired reflexes.

Inhaling at the precise moment you press down on the canister to release the drug is difficult for some people.

Some people can even use an empty toilet paper tube cut down to about 1.5 inches to help space the mist properly.

With things like albuterol, is that it is absorbed by the throat and mouth it will still work to dilate the bronchioles. But with steroid added, this tends to deposit and then go systemic and the dose is too small to work. And the risk of thrush is greater.

I used to use Azmacort, which came with its built in spacer.
I found it very handy.
This is what it looks like:
http://www.usermeds.com/medications/azmacort

Haven't needed it for years though.


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