advertisement
Reply
 
Thread Tools Display Modes
Old 08-15-2012, 12:22 PM #141
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by echoes long ago View Post
i dont know the answer to that question as to how many nodules or the area involved before a person would be expected to experience shortness of breath. a few no, many yes, how many exactly has never been explained to me. shortness of breath could also relate to the cause of the nodules.

i have read that a concentration of nodules in an area is usually related to infection such as TB. sarcoidosis would be diffuse and not confined to a single area.
My specimen has been tested for TB. But, the initial result shows negative. They are still continuing to culture my specimen because it takes months before some bacteria to grow.

I feel relieved that Sarcoidosis is diffuse. I think mine is not scattered, its confined in one single area.
Idiopathic PN is offline   Reply With QuoteReply With Quote

advertisement
Old 08-15-2012, 08:22 PM #142
en bloc's Avatar
en bloc en bloc is offline
Senior Member
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default

Quote:
Originally Posted by Idiopathic PN View Post
He did not mention if my nodules were large enough (and I didnt not ask - duh).
He said that my number in the PFT for the Airway Resistance is 255 (and showed me the report - which of course I dont understand the numbers). He said something about the exchange of oxygen in my lungs....

No, he did not mention anything about O2. It was like saying the burden of knowing about what is causing the activities in my body falls on the rheumatologist.

Is there a special test to know if there is air trapping or ristriction, other than the PFT?

I will call the clinic if they have any other alternative inhaler for me. When I asked if I should continue the inhaler, he said that Symbicort is a strong stuff that it should benefit me. Symbicort does not improve my breathing nor the emergeny inhaler Albuterol.

en bloc, I am sorry, but I am confused with this statement:
The most common Sjogren's complication involving lungs is interstitial lung disease...which can be seen on CT or biopsy so you must be clear of that...thankfully!!"
Did you mean that if its Sjorgren's complication, it will show in my CT or biopsy as ILD?

As for a test for restriction or air trapping: That's why I asked. I didn't know if it was based upon a special test he did or if it was just a conclusion he drew.

As far as I know, ILD is somethings that can be seen definitively on CT or biopsy. It is also the most common (and serious) lung complication of Sjogren's. Since your CT and biopsy did not show it (and it would have if you had it), I'm thinking you don't have this complication...which of course I was thankful for.
en bloc is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 07:43 AM #143
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

You dont realize how grateful I am to all your replies.

Yesterday, I had my visit with the rheumatologist. It was a very frustrating visit that I cried after the doctor left the room. (I hate it when I lost grip of myself.) My emotions have been building up for several months now for getting no definite answers from my doctors.

My pulmo is basically passing me on to the rheumatologist for finding nothing from the inflammation and scarring in my (right) lung. He said that the specimen has been tested for all kinds of stuff that is possible to cause an infection in the lungs but I am negative except for a little Klebsiella. He assured me that this kind of bacteria is not causing my lung any harm but just to make sure I am on Augmentin for 10 days. He said that he has a suspicion that it could be an autoimmune related. When I called in later to ask if there can be any alternative other than Symbicort, his PA said the other 2 available medicines are teh same as Symbicort. If Symbicort does not work, the other 2 will not possibly work as well.

When I mentioned this to the rheumatologist, she said: "Your pulmo keeps on saying it could be autoimmune, but I dont see anything on your results that says you have autoimmune. Dont label yourself with Sjorgren''s unless it shows".

I am fully aware about the difficulty of diagnosing autoimmune diseases, but my frustration is more like a feeling of 'I am boxed against the wall'. The doctors could not see anything. It would have been easier if the bloodworks show something. The on-going pain of neuropathy, the shortness of breath and stomach problems, well, fill my day.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 07:46 AM #144
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by en bloc View Post
As for a test for restriction or air trapping: That's why I asked. I didn't know if it was based upon a special test he did or if it was just a conclusion he drew.

As far as I know, ILD is somethings that can be seen definitively on CT or biopsy. It is also the most common (and serious) lung complication of Sjogren's. Since your CT and biopsy did not show it (and it would have if you had it), I'm thinking you don't have this complication...which of course I was thankful for.
I think it was based on the PFT.

Oh God, thank you so much for saying that ILD will show on the CT.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 08:33 AM #145
en bloc's Avatar
en bloc en bloc is offline
Senior Member
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default

Quote:
Originally Posted by Idiopathic PN View Post
You dont realize how grateful I am to all your replies.

Yesterday, I had my visit with the rheumatologist. It was a very frustrating visit that I cried after the doctor left the room. (I hate it when I lost grip of myself.) My emotions have been building up for several months now for getting no definite answers from my doctors.

My pulmo is basically passing me on to the rheumatologist for finding nothing from the inflammation and scarring in my (right) lung. He said that the specimen has been tested for all kinds of stuff that is possible to cause an infection in the lungs but I am negative except for a little Klebsiella. He assured me that this kind of bacteria is not causing my lung any harm but just to make sure I am on Augmentin for 10 days. He said that he has a suspicion that it could be an autoimmune related. When I called in later to ask if there can be any alternative other than Symbicort, his PA said the other 2 available medicines are teh same as Symbicort. If Symbicort does not work, the other 2 will not possibly work as well.

When I mentioned this to the rheumatologist, she said: "Your pulmo keeps on saying it could be autoimmune, but I dont see anything on your results that says you have autoimmune. Dont label yourself with Sjorgren''s unless it shows".

I am fully aware about the difficulty of diagnosing autoimmune diseases, but my frustration is more like a feeling of 'I am boxed against the wall'. The doctors could not see anything. It would have been easier if the bloodworks show something. The on-going pain of neuropathy, the shortness of breath and stomach problems, well, fill my day.
Did you inquire/discuss the lip biopsy? Does he think Sjogren's is even a possibility where the lip biopsy would be warranted?

I'm sure this is frustrating and feeling SOB and having other symptoms make the frustration even more profound.

If you're not happy with this rheumy, I would encourage you to set up the appt with another...even if it means waiting 2-3 months. Do it now. You can always cancel it down the road if you feel better, get answers from another doctor, etc.
en bloc is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 01:27 PM #146
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by en bloc View Post
Did you inquire/discuss the lip biopsy? Does he think Sjogren's is even a possibility where the lip biopsy would be warranted?

I'm sure this is frustrating and feeling SOB and having other symptoms make the frustration even more profound.

If you're not happy with this rheumy, I would encourage you to set up the appt with another...even if it means waiting 2-3 months. Do it now. You can always cancel it down the road if you feel better, get answers from another doctor, etc.
Yes she requested for a lop biopsy. I'm waiting for the authorization, then schedule. I alspo requested for another referral to a rheumatologist.

What do u take for ur PN? Do u take gabapentin? I am now on 1200 Mg per day but it seems my symptoms have gone to another level. I'm trying to stay on it for as long as I can because am concerned of reaching the Max dosage too soon.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 01:29 PM #147
echoes long ago's Avatar
echoes long ago echoes long ago is offline
Senior Member
 
Join Date: May 2008
Location: new york
Posts: 1,586
15 yr Member
echoes long ago echoes long ago is offline
Senior Member
echoes long ago's Avatar
 
Join Date: May 2008
Location: new york
Posts: 1,586
15 yr Member
Default

i agree with enbloc about a second rheumy opinion and i would also recommend that you get a second pulmonary opinion. you cant just continue on with shortness of breath and no treatment.

write down your questions ahead of time and bring them to your doctors appointments.
echoes long ago is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 01:31 PM #148
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by en bloc View Post
Did you inquire/discuss the lip biopsy? Does he think Sjogren's is even a possibility where the lip biopsy would be warranted?

I'm sure this is frustrating and feeling SOB and having other symptoms make the frustration even more profound.

If you're not happy with this rheumy, I would encourage you to set up the appt with another...even if it means waiting 2-3 months. Do it now. You can always cancel it down the road if you feel better, get answers from another doctor, etc.
Do u think that infiltration will show even with moderate dry mouth? Sometimes I have saliva and sometimes there is dryness but not as bad as others would describe it.

I was referred to an ENT for the biopsy.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 06:00 PM #149
en bloc's Avatar
en bloc en bloc is offline
Senior Member
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default

Quote:
Originally Posted by Idiopathic PN View Post
Do u think that infiltration will show even with moderate dry mouth? Sometimes I have saliva and sometimes there is dryness but not as bad as others would describe it.

I was referred to an ENT for the biopsy.
Yes, infiltration should show even in minimal dry mouth. However, the grading (and subsequent diagnosis) is based upon how much infiltration per 4mm sq area.

I don't take Gabapentin. I tried more then once but got no reduction even on high doses. Right now, I take a small amount of percocet, which only takes the edge off. I have also tried Lyrica and Cymbalta, but side effects were too much.
en bloc is offline   Reply With QuoteReply With Quote
Old 08-17-2012, 07:54 PM #150
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by echoes long ago View Post
i agree with enbloc about a second rheumy opinion and i would also recommend that you get a second pulmonary opinion. you cant just continue on with shortness of breath and no treatment.

write down your questions ahead of time and bring them to your doctors appointments.
This is already my 2nd pulmo doc.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Does Anyone Have Shortness of Breath? Kitty Multiple Sclerosis 28 06-22-2024 09:06 PM
Neck Injury / Shortness of Breath ? Stiffman Spinal Disorders & Back Pain 3 11-19-2011 08:32 AM
Shortness of breath and sweating maribeth123 New Member Introductions 1 06-23-2011 01:00 AM
Baclofen & Shortness of Breath Kitty Multiple Sclerosis 4 06-24-2009 05:19 PM
Shortness of breath (dyspnea) Aussie99 Peripheral Neuropathy 4 04-12-2008 08:57 AM


All times are GMT -5. The time now is 06:53 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.