Doctors :(

[Hobbit]

I disagree Hobbit. Lyme is treatable, not catastrophic and was a good suggestion! Your post served a purpose.

Thank you Phillies Phan !

 

[MATD]

I have various health issues (real ones, not anxiety) but no doctor can find the cause so they send my on my way. Yet, I continue to suffer. For instance I have severe intestinal issues that came on suddenly, out of the blue. Testing didn't show anything serious so I was told it's IBS. I have a neurological problem which has stumped the many doctors I have seen. None of them has ever even heard of my unusual symptoms and there really isn't a name for them so I'm told it's a migraine variant. Other problems are possible heart issues, inner ear issues, joint and muscle pain, rashes, plus many more. These are real problems and I'm at the point where I rarely leave the house for fear of one of these problems hitting me when I am away from the safety of my home. For the most part the specialists I have seen have not helped. They are concerned with only their specialty and no other body part. My GP isn't very helpful either, she'll send me for an x-ray or blood work, maybe refer me to a specialist, but there is never any resolution to any of my problems,

What kind of doctor does one go to get answers? I'm looking for a doctor who will connect the dots and see that I have problems all over the place. Maybe the problem is something systemic, not just one specific part of the body. I'm so tired of this, they deal with their part only and never even think to put all my symptoms together or even half of them. I have lost so much over all of these issues, I want to feel well again. I know something is wrong with me but I don't know how to go about getting answers. I leave every appointment feeling so defeated that someone else has shrugged their shoulders and said "I don't know." I have seen too many cases where a doctor has missed a disease, often something serious, and I'm afraid that is what is happening to me because they won't look outside the box.

Some of the symptoms you mentioned like intentional issues and ear issues are issues many on here have complained about. The fact is, anxiety affects the whole body, not just the mind. Your symptoms can easily be caused by the anxiety. If you were to take the time to educate yourself on how anxiety affects the body, it would offer you great insight into your health issues. But that’s up to you. We with anxiety chase many avenues in our quest to find out what is wrong with us instead of acknowledging that anxiety is truly the culprit in our physical issues. You would be surprised what anxiety is capable of doing to the body. But again, it’s your choice.

I’ve said it before and I’ll say it again. For people like us, we need to get an exceptional GP. One that we can be honest regarding our HA, and know they will take us seriously regardless.

We need to search for such a doctor as diligently as we would a new job or career, or a spouse/significant other. It’s that important.

Now once our efforts have worked to find such a GP, we need to trust her or him. Are they infallible? No. But we must accept that nothing in life is totally certain. We do the best we can to minimize uncertainty, but must accept that even still, it still exists. Such is life.

We need to trust when our GP tells us we do or don’t need imaging, or referral to a specialist, or when they say they have no concern over our bloodwork, even though a reading or two is out of range.

Not meant for Blueberries: This post has turned into one that I’m sure has triggered a few people, myself included. Looking at you Marc, sorry. Please consider not saying the one, way rare exception especially for something so common as back pain, headache and the like.

I agree with you, but may I add? Educating ourselves about anxiety, how it can affect the body, is invaluable. So many of our symptoms can be attributed to anxiety. And we do need to work closely with our doc when it comes to symptoms.

 

[MARCC]

We can't avoid talking about illness as that is part of life. We just have to do the best we can and enjoy life.
My internal medicine and GI physicians have told me that any persistent or worsening symptom needs to be investigated and an organic cause ruled out. Around 14 years ago I had basal cell carcinoma on the upper right part of my nose. The tumor was removed by a Moh's surgeon who told me that there was a 99% chance it would not come back and so far, it has not. When I was in his office, I asked him to look at some other spots I had to make sure they were OK, and they were. I then apologized to him for seeming paranoid about asking to look at my skin. What he then said to me I will never forget. He said to me you are not being paranoid at all and in fact a little paranoia may be good as it may one day save your life. Enough said.

 

[Will Power]

I have various health issues (real ones, not anxiety) but no doctor can find the cause so they send my on my way. Yet, I continue to suffer. For instance I have severe intestinal issues that came on suddenly, out of the blue. Testing didn't show anything serious so I was told it's IBS. I have a neurological problem which has stumped the many doctors I have seen. None of them has ever even heard of my unusual symptoms and there really isn't a name for them so I'm told it's a migraine variant. Other problems are possible heart issues, inner ear issues, joint and muscle pain, rashes, plus many more. These are real problems and I'm at the point where I rarely leave the house for fear of one of these problems hitting me when I am away from the safety of my home. For the most part the specialists I have seen have not helped. They are concerned with only their specialty and no other body part. My GP isn't very helpful either, she'll send me for an x-ray or blood work, maybe refer me to a specialist, but there is never any resolution to any of my problems,

What kind of doctor does one go to get answers? I'm looking for a doctor who will connect the dots and see that I have problems all over the place. Maybe the problem is something systemic, not just one specific part of the body. I'm so tired of this, they deal with their part only and never even think to put all my symptoms together or even half of them. I have lost so much over all of these issues, I want to feel well again. I know something is wrong with me but I don't know how to go about getting answers. I leave every appointment feeling so defeated that someone else has shrugged their shoulders and said "I don't know." I have seen too many cases where a doctor has missed a disease, often something serious, and I'm afraid that is what is happening to me because they won't look outside the box.

I can't believe doctors can't diagnose your problem. I thought science was so advanced these days. It must be utterly frustrating. I sometimes get frustrated with doctors and health practitioners in general. Sometimes they seem a slave to process thinking, instead of thinking outside the square. Laterally.
Here's hoping you get a solution asap.

 

[blueberries]

I would think a very experienced internal medicine doctor would be the best bet if you can get in with one. I think they would have the most knowledge on all the body systems and whether or not your symptoms might be connected in some way.

I’ve said it before and I’ll say it again. For people like us, we need to get an exceptional GP. One that we can be honest regarding our HA, and know they will take us seriously regardless.

We need to search for such a doctor as diligently as we would a new job or career, or a spouse/significant other. It’s that important.

Now once our efforts have worked to find such a GP, we need to trust her or him. Are they infallible? No. But we must accept that nothing in life is totally certain. We do the best we can to minimize uncertainty, but must accept that even still, it still exists. Such is life.

We need to trust when our GP tells us we do or don’t need imaging, or referral to a specialist, or when they say they have no concern over our bloodwork, even though a reading or two is out of range.

Not meant for Blueberries: This post has turned into one that I’m sure has triggered a few people, myself included. Looking at you Marc, sorry. Please consider not saying the one, way rare exception especially for something so common as back pain, headache and the like.

I agree, a good doctor is so important, for everyone, but especially for those of us who need a little extra "care" in the doctor's office. It's hard though, we can't interview doctor's in the same way applicants for a position are interviewed. And most doctors aren't looking for new patients. Since Covid so many doctors near me have left the area or retired. I've tried calling several practices and they either aren't taking new patients or new patient appointments are six months out. I could try going the next town/city over but I really don't want to travel 30 minutes, especially if I'm sick. My old doctor's practice used to have 6 doctors and at least 3 NP's or PA's. They are now down to 1 doctor and 2 NP's.

And i also apologize, i should keep my medical comments to myself . Especially Lyme Disease symptoms as they are vague and common , and i am certainly no doctor!

Actually, I was glad to hear you suggest Lyme. I wish my doctor would have pursued this instead of dropping it after 1 negative test. Other people have also thought this might be my problem. My guess is that I don't have Lyme, but the symptoms certainly fit.

 

[MARCC]

I pay for a concierge doctor, which gives me more attention and a quicker response time.
My wife is a pharmacist and she said 20 to 30 percent of antibody lyme disease tests produce a false negative result.

 

[blueberries]

I can't believe doctors can't diagnose your problem. I thought science was so advanced these days. It must be utterly frustrating. I sometimes get frustrated with doctors and health practitioners in general. Sometimes they seem a slave to process thinking, instead of thinking outside the square. Laterally.
Here's hoping you get a solution asap.

Thank you for your understanding!!

 

[Jonathan123]

I don't think apologies are necessary because HA is all about disease. although mostly imaginary. But it may be best to stick to generalisation rather than specifics. HA leaves people open to any suggestion, however well intended. I remember only too well when I had GAD how I would react if someone said 'you don't look at all well'. Words have power, and once said all the apologies in the world can't erase them. Folk with anxiety are so often very sensitive people, and take in so much that is negative.

 

[blueberries]

Some of the symptoms you mentioned like intentional issues and ear issues are issues many on here have complained about. The fact is, anxiety affects the whole body, not just the mind. Your symptoms can easily be caused by the anxiety. If you were to take the time to educate yourself on how anxiety affects the body, it would offer you great insight into your health issues. But that’s up to you. We with anxiety chase many avenues in our quest to find out what is wrong with us instead of acknowledging that anxiety is truly the culprit in our physical issues. You would be surprised what anxiety is capable of doing to the body. But again, it’s your choice.

I agree with you, but may I add? Educating ourselves about anxiety, how it can affect the body, is invaluable. So many of our symptoms can be attributed to anxiety. And we do need to work closely with our doc when it comes to symptoms.

Just because someone's symptom is one that is also a symptom of anxiety doesn't mean that that person's symptom is definitely from anxiety. As I said before, no doctor has said my problems are because of anxiety. They acknowledge there is a definite problem, but they are unable to determine the root cause. This does not mean it comes from anxiety. I don't need to educate myself on how anxiety affects the body, I am very aware of how it does and I am also aware that my symptoms are not caused by anxiety. I need a doctor who can connect the dots and figure out what is wrong. It does a disservice to assume someone's issues are from anxiety and tell them so, especially when you haven't examined them and don't have access to their medical records.

 

[Jonathan123]

Just because someone's symptom is one that is also a symptom of anxiety doesn't mean that that person's symptom is definitely from anxiety. As I said before, no doctor has said my problems are because of anxiety. They acknowledge there is a definite problem, but they are unable to determine the root cause. This does not mean it comes from anxiety. I don't need to educate myself on how anxiety affects the body, I am very aware of how it does and I am also aware that my symptoms are not caused by anxiety. I need a doctor who can connect the dots and figure out what is wrong. It does a disservice to assume someone's issues are from anxiety and tell them so, especially when you haven't examined them and don't have access to their medical records.

This is a very complex and difficult subject. When is it anxiety and when not? So many doctors still do not believe in anxiety and the effect it can have physically. 'It's all in the mind'. Of course it is, but that does not make it any easier to bear. It happens that doctors will also misinterpret anxiety symptoms as not important and look for physical periblems. They are trained in physical sickness, and unless psychiatrists, have little idea of mental issues, unless they have been there themselves. We can only speak from personal experience.
The assumption that every symptom must be physical is a belief many doctors have. They can't help it, it's how they have been trained.
I asked my doctor if they had any training in anxiety at medical school. The answer was very little. That is sad when you see the number of people with anxiety who don't get the proper treatment. The old prescription pad is always at hand, and anti depressants are freely given. They only mask the symptoms, but do not solve the problem.

 

[MARCC]

My physician told me that organic causes of symptoms need to be ruled out first before attributing their cause to anything else.

 

[Jonathan123]

My physician told me that organic causes of symptoms need to be ruled out first before attributing their cause to anything else.

Of course, and it is only sensible to get a physical check-up before being told it's anxiety. But so often the two can run together. Physical illness can cause anxiety. If we are apprehensive and waiting for test results it can all become too much. In anxiety it is so difficult to keep things in perspective.

 

[blueberries]

I don't know where I originally found this quote but it makes a lot of sense to me.

"Doctors should not be paid until they can correctly diagnose, treat and cure a problem. Then and only then should they be compensated."

This would change the way medicine works. Doctors would finally try to solve the problem instead of pushing us out of their office with a shoulder shrug as fast as they can.

 

[Sairy]

Hi Blueberries. I know this thread is a few months old, but I wondered how things were going for you. Also, a few questions I have:

Could you give some more detail on your neurological issues?

Have you ever had a brain MRI?

The reason I ask is I have been suffering from various bodily issues since November of last year and it's as if a gremlin has entered my body and started pressing loads of random buttons (a list of symptoms as long as your arm in different areas of my body). I am some way towards getting to the bottom of it all, but only through my own research as doctors have fobbed me off with anxiety when i know it is not.

If your symptoms are similar to mine then I will tell you what i think it is with me in the hopes it might help you.

 

[blueberries]

Hi Sairy, Unfortunately, nothing has changed for me. I continue to have strange symptoms and feel horrible everyday. I hate my life right now so much.

I have had a brain MRI and the only thing it showed was a chiari malformation but the doctor said it's too small to cause any problems. Whether or not that is so, I don't know. Some people say they have lots of problems with a small one. I have balance issues, swallowing problems, difficulty talking, hoarseness, vertigo, vision problems (all of which are chiari symptoms) plus more.

My lists of symptoms is probably as long as yours and involves just about every part of my body, even my toes which now and then get tingly/numb. Most are either abdominal or neurological. Latest is a continual discomfort in one area of my breast and I'm too afraid to go to the doctor for this one.

I wish I could find a doctor or who would listen to me, take me seirously,look at my body as a whole, and find out what is wrong with me.

 

[Sairy]

Hi Sairy, Unfortunately, nothing has changed for me. I continue to have strange symptoms and feel horrible everyday. I hate my life right now so much.

I have had a brain MRI and the only thing it showed was a chiari malformation but the doctor said it's too small to cause any problems. Whether or not that is so, I don't know. Some people say they have lots of problems with a small one. I have balance issues, swallowing problems, difficulty talking, hoarseness, vertigo, vision problems (all of which are chiari symptoms) plus more.

My lists of symptoms is probably as long as yours and involves just about every part of my body, even my toes which now and then get tingly/numb. Most are either abdominal or neurological. Latest is a continual discomfort in one area of my breast and I'm too afraid to go to the doctor for this one.

I wish I could find a doctor or who would listen to me, take me seirously,look at my body as a whole, and find out what is wrong with me.

I would discount the doctor saying your chiari is too small to cause problems. Unfortunately this seems to be a common thing said by doctors, but the extent of the tonsillar descent does not necessarily correlate with the symptoms (you can have really low tonsils and no symptoms or a very 'mild' descent and severe symptoms). It is all to do with how the CSF flow is affected. Mine are only 4mm descended and I have a lot of symptoms and, like you, it affects my entire body.

I would give the brain and spine foundation a call as they are very helpful. But yes, I have the same as you and I had a feeling you had a chiari like me. I am also in some chiari groups on Facebook and there are lots of other people going through similar. You are not alone.

 

[blueberries]

I would discount the doctor saying your chiari is too small to cause problems. Unfortunately this seems to be a common thing said by doctors, but the extent of the tonsillar descent does not necessarily correlate with the symptoms (you can have really low tonsils and no symptoms or a very 'mild' descent and severe symptoms). It is all to do with how the CSF flow is affected. Mine are only 4mm descended and I have a lot of symptoms and, like you, it affects my entire body.

I would give the brain and spine foundation a call as they are very helpful. But yes, I have the same as you and I had a feeling you had a chiari like me. I am also in some chiari groups on Facebook and there are lots of other people going through similar. You are not alone.

Wow!! I've never known anyone who's heard of chiari, let alone actually have it. It would be such a relief to know this is my problem. I don't even want to bring it up again with my doctor at this point, last time he said the neurologist said it was too small so therefore I don't have it. Ugh. I've had several MRI's - for vertigo, severe headache, neck pain and stiffness, swallowing difficulties, other neuro problems which I can't even expain they are so weird. All of these are chiari symptoms yet another doctor I saw said I had no symptoms of chiari. I don't know the size of mine, I was told it was borderline. No, actually I wasn't even told about it, I was just told my MRI was normal. It wasn't until I got a copy of the report that I saw that I had this (just another reason I distrust doctors).

Has your doctor been at all helpful with this? Have you had a cine mri?

 

[Sairy]

Wow!! I've never known anyone who's heard of chiari, let alone actually have it. It would be such a relief to know this is my problem. I don't even want to bring it up again with my doctor at this point, last time he said the neurologist said it was too small so therefore I don't have it. Ugh. I've had several MRI's - for vertigo, severe headache, neck pain and stiffness, swallowing difficulties, other neuro problems which I can't even expain they are so weird. All of these are chiari symptoms yet another doctor I saw said I had no symptoms of chiari. I don't know the size of mine, I was told it was borderline. No, actually I wasn't even told about it, I was just told my MRI was normal. It wasn't until I got a copy of the report that I saw that I had this (just another reason I distrust doctors).

Has your doctor been at all helpful with this? Have you had a cine mri?

My doctors have not been in the slightest bit helpful tbh. Everything I know about it has been through my own research after I had the MRI. Your symptoms absolutely sound like chiari. On the Facebook groups I'm on loads of people get told the same as you've been told by neurologists. Many even get told it's anxiety or "just one of those things." Here's the link to one of the Facebook groups I'm on:

Chiari Malformation UK | Facebook

This group is a safe place where people living with Chiari Malformation in the UK can come for support, have a rant or ask for advice. We are all suffering and living with this condition or someone...

www.facebook.com

Here are the symptoms I've been having, so you can compare to yours. This all started 6 months ago for me. I am 37 years old.


Head pain - usually at the back, but sometimes on top
Neck pain/pulling sensation
Clear fluid from nostrils and down the back of throat (both are intermittent)
Wet ears (occasional)
Ear fullness/need to pop
Ear crackling/Tinnitus
Sensitivity to certain sounds
Dizzy/off-balance
Blurred vision
Salty/bitter taste in mouth
Stomach pains and IBS
frequent urination
Food tasting odd
Numbness in arms and legs (usually left side)
Heart palpitations
Sweating at night
Unintended weight loss
Breathlessness
Chest pains
Phantom smells (usually burning)

There are probably more, but the symptoms are so varied that it's impossible to know what is chiari and what isn't. I get different symptoms each day and I never have them all at the same time. When you think about it, the brain stem is being compressed and the brain controls the whole body so if there is a problem in the brain then you can expect problems everywhere.

I'm having an ECG on Friday due to my heart palpitations. I'm hoping all comes back fine, but who knows. This condition is so ridiculous.

 

[blueberries]

I'm in a couple of fb groups for chiari and while it's good to talk with others in the same situation, it doesn't help me get a diagnosis from a doctor which is what I really need. I don't live near a big city and the # of doctors in my area really went down when covid came around. What I need is for my PCP doctor to acknowledge that this might be the reason for my troubles and have him refer me to someone who can help. Which he actually did at one point, but that neurologist said mine is too small to cause any issues, my problem is migraine, here's a prescription, and scooted me out of his office real fast.

I've had lifelong problems but things got worse about 20 years ago when I started getting severe vertigo attacks, Then about 8 years ago i developed problems with swallowing. I had a swallowing study done which showed the problem wasn't in my esopagus but was a neuro problem. My doctor at that time thought I either has a stroke or MS so I went for an MRI which was normal. He was perplexed so he sent me to a neurologist who also was clueless. Only problem he could find was hyperreflexia/clonus (which is a chiari symptom) but couldn't find a reason for that. It wasn't until I had an MRI about 5 years ago for increased, debilitating neuro problems that I found out I had chiari. The radiologist wrote "borderline chiari, stable since last MRI." However, it was never, ever mentioned on the earlier MRI's. Maybe if it had been, especially when I had the swallowing problems, someone would have put 2 and 2 together and said aha, that's what the problem is.

I've kind of back shelved the idea of chiari as no one seems to want to acknowledge it, but your post makes me realize I need to look further into this.

We have a lot of similar symptoms, my main ones are imbalance, extreme motion sensitivity, neck pain, difficulty swallowing, hoarseness, vertigo, headache, tinnitus, intestinal issues, mild scoliosis, headaches, swollen optic nerve, insomnia, vision problems, slow heart rate, low body temperature, hypoglycemia.

I hope and pray your ECG goes well for you and shows no problems. I also get palpitations now and then, they seem to last a few days and then go away for a few months, then come back. I truly understand the frustration you are going through in trying to get a doctor who can help with this.

 

[Phillies Phan]

Hi Blueberries,

First let me say that I understand that money may be tight, and I don’t know what if any insurance you have. I also appreciate what you’re saying about not living near a large city.

But there are quite a few well known, excellent medical centers spread out through the US. For example, Mayo Clinic in Minnesota, M. D. Anderson in Houston, UCLA Medical Center in Southern California, Duke in North Carolina, several in the Northeast from Boston down through Philly, Washington DC, and Johns Hopkins in suburban Baltimore. There’s USF in San Francisco, and typically in the capital or largest city in each state is a good respected Center.

Yes, it would likely be a royal pain to travel to visit the nearest one and getting the appropriate appointment would take time and might cost a lot. But where there’s a will there‘s a way. You might want to think about how to make such an appointment a reality if it’s extremely important to you, which is seems it is.