Feeling overwhelmed and anxious (health related)

[fourcatmom]

I have shared quite a bit in the past on the recent medical issues that I have been dealing with and this week has been a particularly tough week for me. I just really need to vent some of my concerns and frustrations and see if I can put my fears to rest for awhile.

 

I started having problems last year after my second episode of whooping cough. Never really recovered from it and it was my 2nd bout within 1 years time. My main symptom has always been shortness of breath but other things have been present as well, such as fatigue, dry cough, numbness in my hands, body aches, irritable bowel, headaches, memory loss and the list goes on...

 

In March I was told I had sleep apnea and that was by a Pulmonary doctor who didn't really want to acknowledge that I was having a problem with my lungs. He still doesn't want to address it. I had a pulmonary function test which showed restrictive lung disease at 70% lung function. I was also told in August that I had Fibromyalgia when I was sent to another specialist for a consult. She also ran a series of test on me and I have gotten the results back this week.

 

My lgG level was low so they are sending me to an immunologist now to have that checked. Even before the two bouts of WC, I was always sick especially with upper respiratory problems. This in some ways doesn't surprise me that my antibodies might be low. This will be dr. #4.

 

I also found out today that I have a high risk for blood clots so now they want me taking 1 baby asprin a day.

 

Also, my ANA blood test was abnormal with my Scl-70 Ab being High.

They actually added ANA positive - scl70 positive to my list of current health issues. So, in addition to the lung disease, sleep apnea and fibro, I can now add increased risk of blood clots, low antibodies and possible lung scaring or some other autoimmune disease that I don't know about yet. The only good thing is they are referring me to a new Pulmonologist which will be dr. #5.

 

Who deals with the whole person? It seems that everybody takes a piece and tries to figure that out but I am feeling so discouraged about where my life is headed right now.

 

I am really trying to wrap my head around what all means and I feel like they are getting closer to the route of the problem but that also scares the heck out of me. It takes so much time to figure things out, this has been going on since last December and we are still getting new information.

 

Long story short, I want to know why it's hard to breathe but I don't want to hear that I have 3 to 5 years left to live. KWIM? :confused:

 

I have been really trying to hold it together for the kids since I don't want them to know I am worried but I really just needed to get this out and see if anyone has any advice, other then to stay of google which I am having a hard time doing.

 

Thanks for listening.

Edited September 18, 2012 by fourcatmom

[Jean in Newcastle]

:grouphug::grouphug::grouphug: No advice on the doctors. I can recommend that you take curcumin (the active ingredient in tumeric). It was the one thing that controlled my inflammation enough for me to breathe when I had recurrent bouts of pericarditis.

[fourcatmom]

I will look into it. Thank you.

[Pawz4me]

Who deals with the whole person? It seems that everybody takes a piece and tries to figure that out but I am feeling so discouraged about where my life is headed right now.

 

You need to find a good internal medicine doctor (internist). Internists are primary care doctors, but they're specialists in adults, and especially in adults who have complicated health issues. An internist won't take the place of other specialists, but he/she will be kind of a supervisor -- able to coordinate all the specialists and see the "big picture."

[abdesigns]

You need a Rheumatologist, because of the ANA, this is the doctor you want, right away. Trust me on this, we are similar. I have Lupus, Celiac, EoE, possible Scleroderma, and possible stomach cancer, so I'm an old pro at auto-immune issues (just not the cancer, don't know what the heck is going on there, and wasn't expecting it). The tests for Sci-70 is for Scleroderma. You need to push this, and constantly ask questions. If a doctor doesn't respond to this, leave them, and find someone else. Your breathing problems can be auto-immune in nature, and if you have Scleroderma, lung activity is a possibility. A Rheumatologist is a good doctor to keep all of your other doctors straight, especially with the positive ANA, and they'll find you a pulmonary dr that knows what to do with your Sci-70 test results. Everything goes through my Rheumy, because almost everything is connected to an auto-immune, and that's what she does. It's all very terrifying, I know, but, you can be put on medication for it, and it can be stalled.

 

I'll be thinking about you, please make sure to update!

Abby

Edited September 18, 2012 by abdesigns

[amo_mea_filiis.]

Is your sleep apnea being treated?

 

Not sure if this would help; my son saw a pediatric diagnostic team at a childrens hospital. In theory, it was great. He was supposed to see a handful of Drs, who were then supposed to meet and discuss him.

 

Maybe you could see if a big hospital near you has a diagnostics dept?

[Chris in VA]

Has your heart been checked? I seen folks with congestive heart problems have trouble breathing, dry cough, numbness, increased infections and fatigue. The apnea can certainly cause fatigue, memory loss, headaches...

 

I'm sorry you are feeling so awful. I think I"d try to find a diagnostic team, also. :grouphug:

[Dana]

No ideas for you, but :grouphug:

Health concerns are scary.

I hope you can get a good doctor who'll help figure this out and I wish you peace in the meantime.

[prairiewindmomma]

My rheumatologist coordinates most of my care, except when I am pregnant and then my perinatologist coordinates everyone.

[Liz CA]

 

Who deals with the whole person? It seems that everybody takes a piece and tries to figure that out but I am feeling so discouraged about where my life is headed right now.

 

 

Typically osteoppaths, naturopaths and homeopathic doctors have a whole person approach. However, those treatments are gentler and usually take longer to see any effects. In acute situations I'd go to a respiratory specialist but perhaps later switch to someone more holistically minded.

[fourcatmom]

You need a Rheumatologist, because of the ANA, this is the doctor you want, right away. Trust me on this, we are similar. I have Lupus, Celiac, EoE, possible Scleroderma, and possible stomach cancer, so I'm an old pro at auto-immune issues (just not the cancer, don't know what the heck is going on there, and wasn't expecting it). The tests for Sci-70 is for Scleroderma. You need to push this, and constantly ask questions. If a doctor doesn't respond to this, leave them, and find someone else. Your breathing problems can be auto-immune in nature, and if you have Scleroderma, lung activity is a possibility. A Rheumatologist is a good doctor to keep all of your other doctors straight, especially with the positive ANA, and they'll find you a pulmonary dr that knows what to do with your Sci-70 test results. Everything goes through my Rheumy, because almost everything is connected to an auto-immune, and that's what she does. It's all very terrifying, I know, but, you can be put on medication for it, and it can be stalled.

 

I'll be thinking about you, please make sure to update!

Abby

 

The doctor that I spoke with yesterday is a Rheumatologist. She diagnosed the Fibro and ordered all the blood work. She told me on the phone yesterday that I the blood work showed evidence of lung scaring, increased risk of blood clots and low antiobodies. The regular dr. mentioned the Scleroderma. IS that the same as lung scaring. I am almost certain that this is going to come back Pulmonary Fibrosis but I don't know. Trying to make sense of it all.

Is your sleep apnea being treated?

 

They are trying but no. The mask(s) make my physically sick. I end up swallowing all the air and the result is nausea, and bloating. I was fitted for a dental piece which I picked up last week. So far, it is giving me radiating pain from my jaw to my ears, but I am still trying. Your right though that many of the symptoms are related to the sleep and as time goes on this just makes me all more run down.

 

 

Thank you everyone for the information. I know there is a wealth of experience and knowledge on this board and once I have all the facts I can deal with how to keep myself from progressing.

[fourcatmom]

Has your heart been checked? I seen folks with congestive heart problems have trouble breathing, dry cough, numbness, increased infections and fatigue. The apnea can certainly cause fatigue, memory loss, headaches...

 

I'm sorry you are feeling so awful. I think I"d try to find a diagnostic team, also. :grouphug:

 

Yes, they did an Echo back in February and they said it looked fine. She talked about that yesterday when she was talking about the blood clots..but what about my brain and blood clots? And, I would like to know why I am at an increased risk, can I change that somehow. I am only 45 and I think that scares me the most.

[abdesigns]

The doctor that I spoke with yesterday is a Rheumatologist. She diagnosed the Fibro and ordered all the blood work. She told me on the phone yesterday that I the blood work showed evidence of lung scaring, increased risk of blood clots and low antiobodies. The regular dr. mentioned the Scleroderma. IS that the same as lung scaring. I am almost certain that this is going to come back Pulmonary Fibrosis but I don't know. Trying to make sense of it all.

 

Yes, Scleroderma can effect the lungs, in fact, a lot of the auto-immune diseases can effect the lungs. If you are seeing a Rheumy, then you are in good hands (hopefully). I know that with Lupus, you have an increased risk of blood clots.

[Hope in God]

Typically osteoppaths, naturopaths and homeopathic doctors have a whole person approach. However, those treatments are gentler and usually take longer to see any effects. In acute situations I'd go to a respiratory specialist but perhaps later switch to someone more holistically minded.

 

I would really see a naturopath on the side. It may not be the case, but all of your symptoms could point toward some sort of allergy/ intollerance or celiac. If a person is daily poisoning their body with what they eat their health will deteriorate. Likewise, if you are daily eating things that cause an immune response your immune system will not be able to cope with both the allergy and a legitimate immune need.

 

If you were to read the many years of misdiagnosis some people with celiac have endured and the health crisis they have faced you would be appalled.

[besroma]

How are you feeling? :001_smile:

[Trilliums]

A friend had serious health issues and every doctor told her something different. She sought treatment at Mayo Clinic where she was smazed to find that her care was coordinated between all the specialists. She had a person assigned to keep all the different drs aware of her various symptoms and conditions. Turns out a lot if her problems stemmed from the same primary cause, but the resulting symptoms had been treated by different specialists for so long they were too far removed from the root cause for snyone to connect sll the dots.

Best of luck to you!

[TravelingChris]

Are you seeing a pulmonologist? Look, you definitely need to have your primary doctor be a good internal medicine doctor. Whatever they found about your blood clotting, you may very well need to see a hematologist. What is causing you to have this increase in chance of blood clotting? If it is anti-phospholipid antibodies, you really need to get this addresses and not just with baby aspirin.

 

If you do have Scleroderma, you also will need to be followed by a dermatologist too. I would consider the things you need to address most urgently as two= one, do you really have Scleroderma? If so, what organs are affected and what is the treatment recommendation? The second is the blood clotting issue. Have you ever had an iv? Did you ever have a clot with that IV? Have you ever had pain in your leg or legs with traveling, pregnancy, or a broken leg? I know of what I am talking about here. I had a pulmonary embolism that was later dismissed by physicians, my leg swelled up tremendously in my third pregnancy near the end, I always had clots where IVs were put in and even though I did have anti-phospholipid antibodies, it was only in Belgium, where the doctors took it seriously. There, when I broke my leg for the second time, they right away put me on blood thinners. I didn't get a clot that time. But back here in the states, I broke my leg, then traveled on planes back home, then developed a huge clot from my ankle to the top of my upper leg (and who knows how much longer since they didn't check it any further). At that point, I was hospitalized overnight, started on blood thinners, and a few months later, they found that I had Factor V Leiden, a blood clotting genetic factor present in about 5% of European Americans. I am now on lifelong coumadin therapy.

 

For all those urging naturopaths and all, listen Scleroderma is a very, very serious disease. Having anything more likely to cause blood clotting is very serious.

 

Please keep asking questions if you wish since many of us here suffer from autoimmune diseases. Mine are RA, Sjogrens, and Asthma. I also have fibromyalgia but don't really do anything about it since it is the least of my problems.

[fourcatmom]

Are you seeing a pulmonologist? Look, you definitely need to have your primary doctor be a good internal medicine doctor. Whatever they found about your blood clotting, you may very well need to see a hematologist. What is causing you to have this increase in chance of blood clotting? If it is anti-phospholipid antibodies, you really need to get this addresses and not just with baby aspirin.

 

If you do have Scleroderma, you also will need to be followed by a dermatologist too. I would consider the things you need to address most urgently as two= one, do you really have Scleroderma? If so, what organs are affected and what is the treatment recommendation? The second is the blood clotting issue. Have you ever had an iv? Did you ever have a clot with that IV? Have you ever had pain in your leg or legs with traveling, pregnancy, or a broken leg? I know of what I am talking about here. I had a pulmonary embolism that was later dismissed by physicians, my leg swelled up tremendously in my third pregnancy near the end, I always had clots where IVs were put in and even though I did have anti-phospholipid antibodies, it was only in Belgium, where the doctors took it seriously. There, when I broke my leg for the second time, they right away put me on blood thinners. I didn't get a clot that time. But back here in the states, I broke my leg, then traveled on planes back home, then developed a huge clot from my ankle to the top of my upper leg (and who knows how much longer since they didn't check it any further). At that point, I was hospitalized overnight, started on blood thinners, and a few months later, they found that I had Factor V Leiden, a blood clotting genetic factor present in about 5% of European Americans. I am now on lifelong coumadin therapy.

 

For all those urging naturopaths and all, listen Scleroderma is a very, very serious disease. Having anything more likely to cause blood clotting is very serious.

 

Please keep asking questions if you wish since many of us here suffer from autoimmune diseases. Mine are RA, Sjogrens, and Asthma. I also have fibromyalgia but don't really do anything about it since it is the least of my problems.

 

I sent you a private message but the blood clotting came up in a blood test. It said if you were positive you had more change or either miscarriage or blood clots from what I remember. I already started the baby asprin but I would like to know more. Not really sure what doctor is suppose to be addressing that. I am so tired I can't see straight right now. Moving, School, medical...and I am sick on top of it all. thanks for the information though.

 

It was part of this test ANTIPHOSPHOLIPID ANTIBODY PANEL

If I am not mistaken, this was part of the Lupus test.

My Cardiolipin antibody level was High...still trying to figure this all out.

Edited September 25, 2012 by fourcatmom

[besroma]

I hope you get some answers soon. :grouphug: