Aa
Connective Tisdue Disorder
Hello-
None of the doctors can specifically tell me what I have........only to say a CTD. Can anyone shed any light on this? Is there anything I should be doing? I am on O2, fatigued, now on Pred. I dropped it from 60mgs. to 40 mgs over two months. Moon face which I am so self-conscious I don't want to be seen. Any advice is appreciated. I am depressed over all of this.
Thank you.
None of the doctors can specifically tell me what I have........only to say a CTD. Can anyone shed any light on this? Is there anything I should be doing? I am on O2, fatigued, now on Pred. I dropped it from 60mgs. to 40 mgs over two months. Moon face which I am so self-conscious I don't want to be seen. Any advice is appreciated. I am depressed over all of this.
Thank you.
Hi Trish.
Gosh your story is heartbreaking,and it seems you are suffering unduly.
Pnuemonitis can be found in auto-immune diseases.
When you state hypersensitiity pnuemonitis, then this tells me this is an immune system response, caused by what i dont know.
When there is chronic inflammation it results in fibrosis.
I would like to see some bloodwork, also the bloodwork from the allergy specialist.
I would say either find yourself a good rheumatoloist, for auto-immune.
Or a good immunologist, as your problems, maybe arrising from an immune system response.
Can i ask has the steroids helped you in anyway?
Look forward to hearing off you
Nicola.
Gosh your story is heartbreaking,and it seems you are suffering unduly.
Pnuemonitis can be found in auto-immune diseases.
When you state hypersensitiity pnuemonitis, then this tells me this is an immune system response, caused by what i dont know.
When there is chronic inflammation it results in fibrosis.
I would like to see some bloodwork, also the bloodwork from the allergy specialist.
I would say either find yourself a good rheumatoloist, for auto-immune.
Or a good immunologist, as your problems, maybe arrising from an immune system response.
Can i ask has the steroids helped you in anyway?
Look forward to hearing off you
Nicola.
Please see a rheumatologist. They are the best at auto-immune. Keep in mind that, depending upon where you live, it could take up to three months or more to get an appt. Your symptoms do sound like they could be auto-immune. I have mixed connective tissue disease, Sjogren's Syndrome, hypothyroidism and Reynauds. If you have one you are more likely to have another. I have been trying to get answers for going on six years and I have discovered that the auto-immune stuff had probably been going on for years, but the symptoms are so diffuse they nobody connected the dots. I am currently on plaquinil, naproxyn, levothyroxine (thyroid), acid reducer (because of the naproxyn), amytriptyline to help me sleep, plus a couple more I can't think of right now. I was on prednisone for a year when I was first diagnosed. Hated the moon face and the weight gain. Still have both, but the moon face is probably due to enlarged parotid glands from my Sjogren's.
My symptoms are extreme fatigue, loss of O2 upon exertion, coughing spells (non-productive and make me feel like I am fading), weak. No muscle strength, per se.
My skin looks like a dry desert, no moisture. I used to have pain in my hands (the meaty part of the thumb) but it is gone now. I am told I have 40% use of my lungs based on the LFT. The thoracic surgeon said he did not see emphysema. He described the lung biopsy as "meaty". Biopsy tests for the lungs and lymph were also sent to Cleveland Clinic in Ohio and came back negative. I cannot take dep breaths without coughing. I am on anxiety meds. I pant some days and other days I can speak in clear sentences. My eyes and face are now swollen from the Pred. I do not recognize myself in the mirror. I am in self-imposed exile. I use portable O2 when I must run errands. I will find my blood work results for you. The allergist said I had the "normal" allergies (grass/cats/trees) but said that it was not causing the severe
conditions I am experiencing. I either have insomnia and am up for 48 hrs at a time or I sleep for 12 hours straight. It is interfering with my work. I have tried to regulate myself for weeks and it is not working. I take a Xanax at a regular bedtime and here I am at 4:00 a.m. I am a mess, aren't I? I have moments where I try to keep positive for my family and other times I think I am too tired and want to just stop the meds and what will be, will be and let nature take it's course. I am haunted by the first and last pulmonologist and their predictions in such a callous manner.
Thanks for listening.
My skin looks like a dry desert, no moisture. I used to have pain in my hands (the meaty part of the thumb) but it is gone now. I am told I have 40% use of my lungs based on the LFT. The thoracic surgeon said he did not see emphysema. He described the lung biopsy as "meaty". Biopsy tests for the lungs and lymph were also sent to Cleveland Clinic in Ohio and came back negative. I cannot take dep breaths without coughing. I am on anxiety meds. I pant some days and other days I can speak in clear sentences. My eyes and face are now swollen from the Pred. I do not recognize myself in the mirror. I am in self-imposed exile. I use portable O2 when I must run errands. I will find my blood work results for you. The allergist said I had the "normal" allergies (grass/cats/trees) but said that it was not causing the severe
conditions I am experiencing. I either have insomnia and am up for 48 hrs at a time or I sleep for 12 hours straight. It is interfering with my work. I have tried to regulate myself for weeks and it is not working. I take a Xanax at a regular bedtime and here I am at 4:00 a.m. I am a mess, aren't I? I have moments where I try to keep positive for my family and other times I think I am too tired and want to just stop the meds and what will be, will be and let nature take it's course. I am haunted by the first and last pulmonologist and their predictions in such a callous manner.
Thanks for listening.
I am so grateful to hear from you. Thank you very, very much.I have been to three pulmonolgists over the course of two years now. The first one with just a lung function test said I had asthma (which I have always had), COPD, emphysema, idiopathic interstitial lung disease, exposure to asbestos, pulmonary hypertension, obesity, a leaky mitral and triscupid valve in the heart and some other things.
Went to a cardiologist and he said nothing was wrong with my heart. I asked for a referral to another pulmonologist. Pul. #2 did the same tests and said he said he could not definitively determine what I had.
Went back to my primary and got a third pul., the head of the dept. at Cleveland Clinic. Ordered a bronchoscopy/CAT/blood/third lung function. Negative on the bronchoscopy, but said I might have interstitial fibrosis. They also by chance found on my X-rays that I have scoliosis.
A month later orders another bronchosopy/lung biopsy/lymph biopsy from a cardio-thoracic surgeon. A week after the surgery the pul. tells me (without the results from pathology back) that I have an auto-immune disease (hypersensitivity pneumonitis) but they are really not too sure about that and if I don't have a double lung transplant in the future, I will probably die in 5 years. This was all in front of my husband and the dr. yawned while delivering that news. I go back for the results of the biopsy three weeks later, thinking about dying in 5 yrs. and he said he had some what better news. That I have chronic pneumonia now and I might not die so fast. I have no wheezing, noises in my chest or have had any fever or any other signs of pneumonia nor honorable mentions from the X-rays.
I was then sent to an allergist who ordered blood work and eliminated three major auto-immune diseases (RA, sclerdoderma and lupus) but told me they still can't say for sure what is wrong with me. He's like to see me every couple weeks to chit chat and drop a $50.
Frankly, I am over it all. I now have a co-payment of $7,000.00 to the hospital, am in no better condition and still don't know the reality of my condition. The side effects of the Prednisone (60 mgs.a day and I have reduced it systematically for the past two months to 40 mgs. a day. I was out of my mind and skin. I have the moon face/weight gain/aggression) are equal or worse than the attacks from the disease. Especially when they give you a new diagnosis every month. It's ridiculous.
Anything you can say will be appreciated so much. I am tired physically and mentally after two years of this daily. I realize there are a lot of people a lot worse off than me but there are days I just want to give up. I am O2 at night as they say I have sleep apnea. I use O2 in the day if I have to walk a lot as my oxy goes below 90. They say I have a connective tissue disorder. So what do I do to treat that? No one has said anything except Pred. Am I just not accepting or actually hearing what they are trying to tell me or do they know what they are telling me. I am 54. Female. I also have insomnia as you can see. I think about this situation 24/7 and cannot get it out of my head. I am very depressed. I am self-conscious about the moon face as I still try to work. I need an income. That was alot to dump on you. Thanks for letting me vent. :)
Went to a cardiologist and he said nothing was wrong with my heart. I asked for a referral to another pulmonologist. Pul. #2 did the same tests and said he said he could not definitively determine what I had.
Went back to my primary and got a third pul., the head of the dept. at Cleveland Clinic. Ordered a bronchoscopy/CAT/blood/third lung function. Negative on the bronchoscopy, but said I might have interstitial fibrosis. They also by chance found on my X-rays that I have scoliosis.
A month later orders another bronchosopy/lung biopsy/lymph biopsy from a cardio-thoracic surgeon. A week after the surgery the pul. tells me (without the results from pathology back) that I have an auto-immune disease (hypersensitivity pneumonitis) but they are really not too sure about that and if I don't have a double lung transplant in the future, I will probably die in 5 years. This was all in front of my husband and the dr. yawned while delivering that news. I go back for the results of the biopsy three weeks later, thinking about dying in 5 yrs. and he said he had some what better news. That I have chronic pneumonia now and I might not die so fast. I have no wheezing, noises in my chest or have had any fever or any other signs of pneumonia nor honorable mentions from the X-rays.
I was then sent to an allergist who ordered blood work and eliminated three major auto-immune diseases (RA, sclerdoderma and lupus) but told me they still can't say for sure what is wrong with me. He's like to see me every couple weeks to chit chat and drop a $50.
Frankly, I am over it all. I now have a co-payment of $7,000.00 to the hospital, am in no better condition and still don't know the reality of my condition. The side effects of the Prednisone (60 mgs.a day and I have reduced it systematically for the past two months to 40 mgs. a day. I was out of my mind and skin. I have the moon face/weight gain/aggression) are equal or worse than the attacks from the disease. Especially when they give you a new diagnosis every month. It's ridiculous.
Anything you can say will be appreciated so much. I am tired physically and mentally after two years of this daily. I realize there are a lot of people a lot worse off than me but there are days I just want to give up. I am O2 at night as they say I have sleep apnea. I use O2 in the day if I have to walk a lot as my oxy goes below 90. They say I have a connective tissue disorder. So what do I do to treat that? No one has said anything except Pred. Am I just not accepting or actually hearing what they are trying to tell me or do they know what they are telling me. I am 54. Female. I also have insomnia as you can see. I think about this situation 24/7 and cannot get it out of my head. I am very depressed. I am self-conscious about the moon face as I still try to work. I need an income. That was alot to dump on you. Thanks for letting me vent. :)
Hi.
Sorry to hear you are suffering, but it would be good for us on this forum, if you could tell us what tests have been done, bloodtests like ANA, Anti-DNA, etc.
If you have any blood work reports, we could get a better picture, and could see what has been ruled out, from what hasnt,
Also if you could post your symptoms, ie, like dry eyes, mouth, joint pain, swelling, etc.
Just so we get a better picture, and can advice, or help you in your next stage.
Sorry to ask a lot of questions, im just trying to work out which CTD illness this is.
Hope to hear from you soon.
Nicola
Sorry to hear you are suffering, but it would be good for us on this forum, if you could tell us what tests have been done, bloodtests like ANA, Anti-DNA, etc.
If you have any blood work reports, we could get a better picture, and could see what has been ruled out, from what hasnt,
Also if you could post your symptoms, ie, like dry eyes, mouth, joint pain, swelling, etc.
Just so we get a better picture, and can advice, or help you in your next stage.
Sorry to ask a lot of questions, im just trying to work out which CTD illness this is.
Hope to hear from you soon.
Nicola
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