So Many Problems, Yet No Doctor Will Listen!

[ptkds]

Ok, so I haven't been on here in a while. I am not sure if this it really the right place, but I just need somewhere to vent.

I have been having some heart/breathing problems lately. My heart rate jumps up for no reason at times, and that has been going on for about 3 years. I have had a few tests done, and they are all normal. But the cardiologist did put me on a beta blocker to slow my heart rate down.

Recently, I have been having a hard time "catching my breath." It is not asthma because I never wheeze. I just get out of breath after doing the smallest thing. A little over a month ago, my dh had to call an ambulance because I could not breath well. It looked like I was hyperventilating, but I wasn't. I just couldn't seem to fill my lumgs with enough air and I couldn't slow down my breathing rate. And I was SO tired that I could barely stay awake, despite sleeping all day already. They found nothing wrong with me in the ER and sent me home. I called my cardiologist and he said that my heart was fine, and maybe I should go to see a pulmonologist. I got an appointment set up to do that.

In the mean time, I was diagnosed with carpal tunnel syndrome in both hands. I had set up a surgery date to have that taken care of, and they will be using general anesthesia since it is both hands.

In the last month or so, it sometimes hurts in the middle of my chest to take a deep breath. When I get out of breath, the pain moves up into my neck and spreads wider in my chest.

Then, last week, I wound up in the ER again with the same breathing problems and pain in the middle of my chest. This doctor actually listened to me! He seemed to actually believe me and he even had a theory or two. He asked me if I had ever been diagnosed with a Mitral Valve Prolapse (MVP). I said no. Then he had my lay down on my left side and he listened to my heart. No doctor has ever done that before. He heard a click (murmur) which had never been heard before. He was sure I had MVP and told me to contact my cardiologist as soon as I could. He also had noted on my paper work that I had a prolonged QT interval on my EKG.

So, I call my cardiologist and he blows me off AGAIN. He didn't even see me, just talked to me on the phone. He still insisted that nothing was wrong with my heart, despite what the ER doctor said, and he told me to just keep my appointment with the pulmonologist. Then I asked him if it would be safe to have the surgery, and he said it was fine. Can you believe this guy? Needless to say, he is fired as my cardiologist. I will find a new one.

I have moved up my appointment with the pulmonologist to Thursday of this week. I am so hopeful that he will listen to me and actually try to figure out what is wrong with me.

And to top it off, I now have a new symptom. My left arm keeps getting these shooting pains between the shoulder and elbow. Sometimes it moves up into my shoulder and neck. This has been going on for about a week or 2. Tonight it is really bothering me. It is worse after I have been doing things.

So, if you are still reading this, please pray that the new doctor will figure out my problems and fix them! I am so upset by all of this, and I just can't keep doing this anymore.

Thanks for letting me vent!

[mushroom]

Ok, so I haven't been on here in a while. I am not sure if this it really the right place, but I just need somewhere to vent.

I have been having some heart/breathing problems lately. My heart rate jumps up for no reason at times, and that has been going on for about 3 years. I have had a few tests done, and they are all normal. But the cardiologist did put me on a beta blocker to slow my heart rate down.

Recently, I have been having a hard time "catching my breath." It is not asthma because I never wheeze. I just get out of breath after doing the smallest thing. A little over a month ago, my dh had to call an ambulance because I could not breath well. It looked like I was hyperventilating, but I wasn't. I just couldn't seem to fill my lumgs with enough air and I couldn't slow down my breathing rate. And I was SO tired that I could barely stay awake, despite sleeping all day already. They found nothing wrong with me in the ER and sent me home. I called my cardiologist and he said that my heart was fine, and maybe I should go to see a pulmonologist. I got an appointment set up to do that.

In the mean time, I was diagnosed with carpal tunnel syndrome in both hands. I had set up a surgery date to have that taken care of, and they will be using general anesthesia since it is both hands.

In the last month or so, it sometimes hurts in the middle of my chest to take a deep breath. When I get out of breath, the pain moves up into my neck and spreads wider in my chest.

Then, last week, I wound up in the ER again with the same breathing problems and pain in the middle of my chest. This doctor actually listened to me! He seemed to actually believe me and he even had a theory or two. He asked me if I had ever been diagnosed with a Mitral Valve Prolapse (MVP). I said no. Then he had my lay down on my left side and he listened to my heart. No doctor has ever done that before. He heard a click (murmur) which had never been heard before. He was sure I had MVP and told me to contact my cardiologist as soon as I could. He also had noted on my paper work that I had a prolonged QT interval on my EKG.

So, I call my cardiologist and he blows me off AGAIN. He didn't even see me, just talked to me on the phone. He still insisted that nothing was wrong with my heart, despite what the ER doctor said, and he told me to just keep my appointment with the pulmonologist. Then I asked him if it would be safe to have the surgery, and he said it was fine. Can you believe this guy? Needless to say, he is fired as my cardiologist. I will find a new one.

I have moved up my appointment with the pulmonologist to Thursday of this week. I am so hopeful that he will listen to me and actually try to figure out what is wrong with me.

And to top it off, I now have a new symptom. My left arm keeps getting these shooting pains between the shoulder and elbow. Sometimes it moves up into my shoulder and neck. This has been going on for about a week or 2. Tonight it is really bothering me. It is worse after I have been doing things.

So, if you are still reading this, please pray that the new doctor will figure out my problems and fix them! I am so upset by all of this, and I just can't keep doing this anymore.

Thanks for letting me vent!

Wow, you are having a really tough time of it. I would listen to the ER doc, and get myself a new cardiologist if that is possible. Take your ER records to him and ask for a re-evaluation. Tell him about your new symptoms. Keep the pulmonology appointment because it sounds to me like you do have problems with your lungs. That's the way I was when I had pulmonitis. I could not even walk across the room without getting out of breath. You are not in any shape to contemplate general anesthesia at this point, from my point of view. Get some more medical opinions. I am not a doctor but you need better advice than what your current cardiologist is giving you.

Keep seeking, and let the carpal tunnel problems wait until you get your heart/lungs sorted out. Definitely fire that cardiologist who would not even see you and get a new one. My god, how callous some of these docs can be.

[Jestgar]

I had a lot of these - heart racing, shortness of breath, chest pain, when I was anemic. I had been chronically anemic for some time, and I noticed when my 'crit got below about 26 or 27 I had an increase in symptoms. My chest pain only went away after months of taking iron.

[flourgirl]

A couple of things come to mind. I had a lot of heart issues when my nutrient levels were very low and I was anemic. Perhaps you need a blood panel done to check these out. Because of your carpel tunnel....which is an inflammation....maybe you should see a rhumatologist to see if you have inflammation problems elsewhere. I know that chronic inflammation/infection can problems with the body that don't appear on the surface to be related, but may be, inluding irregular heart beats.

Don't let you docs blow you off, not even once. While I realize, with the dearth of info. out there that there is a need for specialization....we get shortchanged because they all look at small specific areas/symptoms as seperate. Seems rare to find one who looks at us as ONE BODY, ONE SYSTEM, instead of a group of separate parts.

I urge you to keep looking, and please keep us posted. Good luck to you!

[jerseyangel]

I had a lot of these - heart racing, shortness of breath, chest pain, when I was anemic. I had been chronically anemic for some time, and I noticed when my 'crit got below about 26 or 27 I had an increase in symptoms. My chest pain only went away after months of taking iron.

While I was reading your post, I was thinking the same thing. I was anemic for years, despite supplimentation, and I always felt out of breath. I would answer the phone, and people would say--did I catch you at a bad moment?--but all I had done was cross the room.

I also had the odd chest pain--despite normal cardiac testing, except for a slightly leaky valve.

At any rate, I do wish you well at your appointment this week. I hope this time you get some answers

[TrillumHunter]

Another anemic here. Before I was dx with celiac I had a stress test and the whole workup for chest pain--at age 34. I was only "slighty" anemic so they didn't think it was that. My heart is fine, great in fact but the I don't have slight anemia. My current hematologist says I have severe anemia masked by the inflammation in my body. I'm getting an iron transfusion next week after trying to correct it with oral for four years.

Keep pushing but maybe you should visit a hematologist?

[Jestgar]

Or just ask for your numbers. Since my 'crit around 29 when they checked, and many women are around 35, they assumed I was only slightly anemic. Unfortunately (for me) my normal is around 47, so I was quite anemic, and symptomatic.

[flourgirl]

Wanted to add that Mitral Valve Prolapse is not such a bad thing in and of itself. I have it, some sisters who have it.....I think it's a fairly normal occurance. You'll probably be told to take antibiotics before any major dental work. The more I think about it, it could very well be low ferritin/and or inflammation. In any event, I wish you luck, and yes, please keep us posted.

[Fiddle-Faddle]

MVP and connective tissue disorders seem to be common in people with celiac--I remember reading that last year, but can't find the link.

My chiropractor was just saying yesterday that people with Lyme tend to have the extreme fatigue, (new) heart issues, and breathing problems. Have you looked into that? I know one of the big Lyme sites is www.lymenet.com, but I don't know which are the best sites for up-to-the-minute info.

[Mother of Jibril]

Another anemic here. Before I was dx with celiac I had a stress test and the whole workup for chest pain--at age 34. I was only "slighty" anemic so they didn't think it was that. My heart is fine, great in fact but the I don't have slight anemia. My current hematologist says I have severe anemia masked by the inflammation in my body. I'm getting an iron transfusion next week after trying to correct it with oral for four years.

How did you figure out that you were anemic if it was masked by inflammation? I've been having some fatigue and dizziness lately... and I've been borderline anemic for years.

[ravenwoodglass]

Please do get checked for anemia, not just for iron but also for B12. I had surgery years ago for carpel tunnel that turned out to actually be parathesias caused by B12 and nerve damage from celiac. Make sure you let your doctor know if you take a vitamin with folate as that can mask a B12 defieciency. Or you can just add a sublingual B12 to your diet and see if that helps.

[Jestgar]

How did you figure out that you were anemic if it was masked by inflammation? I've been having some fatigue and dizziness lately... and I've been borderline anemic for years.

They can check your ferritin: Open Original Shared Link

Chronic anemia leads to low ferritin levels.

Your body first seeks to maintain your hemoglobin levels, and in the absence of sufficient iron intake, it will get it's iron from stored ferritin. You can be "slightly anemic" but have no stores of iron left, which can lead to other problems.

Once my ferritin reached 2, my 'crit dropped pretty precipitously.

[Mother of Jibril]

Please do get checked for anemia, not just for iron but also for B12. I had surgery years ago for carpel tunnel that turned out to actually be parathesias caused by B12 and nerve damage from celiac. Make sure you let your doctor know if you take a vitamin with folate as that can mask a B12 defieciency. Or you can just add a sublingual B12 to your diet and see if that helps.

That's interesting. Since I'm still breastfeeding I'm taking a prenatal vitamin... it has the maximum recommended folate (800 mcg).

Maybe I'll go to the walk-in clinic tomorrow!

[tarnalberry]

btw, you can have asthma and never wheeze. it's a (frustrating) myth that you have to wheeze to have asthma.

[ptkds]

Thanks for all of your ideas!

I have been checked for anemia, but I assume it was only the traditional test. It came back normal. My B12 was just checked and it was low normal, so I have added that vitamin to my daily meds. I do know that my sed rate is a little bit higher each time it is checked, but the rheumatologist just told me that I "will never have a normal sed rate." She didn't explain why, just said that.

I am getting ready for my appointment early in the morning. I will update you guys when I can!

Thanks!

[rinne]

....... He still insisted that nothing was wrong with my heart, despite what the ER doctor said, and he told me to just keep my appointment with the pulmonologist. Then I asked him if it would be safe to have the surgery, and he said it was fine. Can you believe this guy? Needless to say, he is fired as my cardiologist. I will find a new one.

......

If you haven't, please do some googling on the risks of surgery when using beta blockers, I think the doctor who keeps blowing you off is an idiot, but then you know that.

[ravenwoodglass]

Thanks for all of your ideas!

I have been checked for anemia, but I assume it was only the traditional test. It came back normal. My B12 was just checked and it was low normal, so I have added that vitamin to my daily meds. I do know that my sed rate is a little bit higher each time it is checked, but the rheumatologist just told me that I "will never have a normal sed rate." She didn't explain why, just said that.

I am getting ready for my appointment early in the morning. I will update you guys when I can!

Thanks!

Do you have other previous testing levels for B12 to compare it to? If your levels are slowly dropping your body may have stopped being able to use this a while ago as it takes a long time for the blood levels to drop even when we stop utilizing the B12. I would make sure that the B12 you are adding is sublingual. That way it will for sure get into your system. B12 has no toxic levels so don't be nervous about the high amount that is in the sublinguals.

[still tiredofdoctors]

Hmmmm . . . . kind of take issue with "you will never have a normal sed rate." When your body is in homeostasis, even with Celiac, you should NOT have an elevated sedimentation rate.

I have run the GAMUT with physicians for quite some time. My philosophy is this: Some are great, some good, some fair and some -- well, they're just idiots. Also, some are simply lazy and do not want to invest the time it takes to research a particular difficulty you are having. While going to a new MD is a real PAIN, unless your MD really takes care of you, CUT BAIT!! I'm somewhat "jaded", so you might have to take this portion of advice with a grain of salt!

I agree with Ravenwoodglass . . . sublingual B12, combined with Folate, can definitely help with symptoms that sound similar to peripheral neuropathy. You CAN have it only in your upper extremities. I had previously given myself Cyanocobalamin (B12) injections 1 mg/ml and 1cc intramuscularly three times per week because of a genetic mitochondrial defect. The physician I see now has had me have methocobalamin -- another form of B12 that, according to the compounding pharmacist -- compounded at 25 mg/ml and I inject 1cc 4 times per week. Combining that with folate, I have been able to dramatically reduce the amount of Neurontin I have had to take for peripheral neuropathy.

I take the extreme amounts of B12 that I do because I do not utilize it efficiently. My levels were mid-range, and my neurologist (that I had at the time . . . . ) was satisfied that it was okay. The geneticist was not, and the two of them went rounds with regard to the issue.

My most recent MD (long story) who has given me the methocobalamin absolutely believes that any additional B12 that I receive will of course be excreted, but it is not a risk to either the liver or the kidneys (my former neurologist had me convinced that my kidneys were going to blow if I took B12).

Even with the sublinguals - which I know are much less than what I was taking - I still think it is a very VALID treatment to try!