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My Wife And I Have MS Like Symptoms And Since Definitive Cure Does Not Appear Possible, How Do I Partner With My Physician?
Question: My wife and I have MS like symptoms. There are several diseases that share this symptom cluster.
Based on history and the appearance of symptoms, I GUESS she had "it" first and I acquired "it" by being intimate with her.
Based on my science knowledge and little else, I wonder. Does a exact and correct diagnosis buy us anything in healing? If not, what is our best course to return to full vigor? These diseases/disease cluster are similar. Thus the basic idea of medicine today of diagnosis and then treatment by a "shown to be effective treatment" appears to be seriously flawed.
No one is cured of MS, or several others in the disease cluster.
And since definitive cure does not appear possible, how do I partner with my physician? Hippocrates - life long partnership with the patient.
Based on history and the appearance of symptoms, I GUESS she had "it" first and I acquired "it" by being intimate with her.
Based on my science knowledge and little else, I wonder. Does a exact and correct diagnosis buy us anything in healing? If not, what is our best course to return to full vigor? These diseases/disease cluster are similar. Thus the basic idea of medicine today of diagnosis and then treatment by a "shown to be effective treatment" appears to be seriously flawed.
No one is cured of MS, or several others in the disease cluster.
And since definitive cure does not appear possible, how do I partner with my physician? Hippocrates - life long partnership with the patient.
Brief Answer:
MS unlikely, diagnosis even if not leading to a cure may help life quality
Detailed Answer:
Hello,
It is hard to express a definite opinion since you mention none of the symptoms and it seems you haven't had any exams you can bring the reports either.
Regarding MS itself I don't think it is the case, first of all because of your age. Usually it manifests before the age of 45. There are rare cases when it manifests later but after the age of 60 it would be really exceptional, haven't encountered any case in 10 years dealing with neurological patients. So at your reported age of 75 MS isn't a likely diagnosis. The fact you and your wife both have the symptoms goes against it as well.
Of course as you say yourself there are many other inflammatory or infections conditions which may produce similar symptoms. Apart from physical exam imaging, blood and sometimes cerebrospinal fluid tests are usually needed for the diagnosis. Whether it is worth going the trouble, whether there is a cure is hard to say without knowing the diagnosis, treatment and prognosis is not the same. If it is an infection (which since there is two of you having the symptoms is well possible) then a cure may be achieved through antibiotics. If it is an inflammatory condition then as you seem to be aware a complete cure may not be possible, but still symptoms may be greatly improved thus improving life quality and disease progression may be slowed significantly.
I remain at your disposal for other questions.
Thanks.
MS unlikely, diagnosis even if not leading to a cure may help life quality
Detailed Answer:
Hello,
It is hard to express a definite opinion since you mention none of the symptoms and it seems you haven't had any exams you can bring the reports either.
Regarding MS itself I don't think it is the case, first of all because of your age. Usually it manifests before the age of 45. There are rare cases when it manifests later but after the age of 60 it would be really exceptional, haven't encountered any case in 10 years dealing with neurological patients. So at your reported age of 75 MS isn't a likely diagnosis. The fact you and your wife both have the symptoms goes against it as well.
Of course as you say yourself there are many other inflammatory or infections conditions which may produce similar symptoms. Apart from physical exam imaging, blood and sometimes cerebrospinal fluid tests are usually needed for the diagnosis. Whether it is worth going the trouble, whether there is a cure is hard to say without knowing the diagnosis, treatment and prognosis is not the same. If it is an infection (which since there is two of you having the symptoms is well possible) then a cure may be achieved through antibiotics. If it is an inflammatory condition then as you seem to be aware a complete cure may not be possible, but still symptoms may be greatly improved thus improving life quality and disease progression may be slowed significantly.
I remain at your disposal for other questions.
Thanks.
Above answer was peer-reviewed by :
Dr. Vaishalee Punj
I wrote a long answer to your question. The answer was deleted when I sent it. It is hard for me to expect much of you. The reason has absolutely nothing to do with you or your answer.
It has to do with the service itself. I am deeply disappointed. I need help. I have been denied help in every place or physician I seek help from. I shake my head friend. Sad.
It has to do with the service itself. I am deeply disappointed. I need help. I have been denied help in every place or physician I seek help from. I shake my head friend. Sad.
Brief Answer:
I am sorry that has happened.
Detailed Answer:
Hello again!
I am sorry that your answer has been deleted, your frustration is understandable. I do not know the reason so can't make any comment on the reason for that having happened. Perhaps if you write to the site administrators you can receive some info and help.
I am sorry that has happened.
Detailed Answer:
Hello again!
I am sorry that your answer has been deleted, your frustration is understandable. I do not know the reason so can't make any comment on the reason for that having happened. Perhaps if you write to the site administrators you can receive some info and help.
Above answer was peer-reviewed by :
Dr. Nagamani Ng
I think this is the situation. I had a psychiatrist who wrongly diagnosed me as bipolar, non-compliant, psychosomatic, delusional parasitosis and every other bad thing a psychiatrist can say about a person. The result is that I have not been able to be treated for any real disease with a few notable exceptions.
While I can prove these physicians are wrong, they will not listen to the reasoning. I am not sure how to handle these stubborn, fist in my face people. It is clear they are punishing me for some purpose. What that purpose is, I have no idea.
The idea of punishing someone by physicians is totally crazy to me.
While I can prove these physicians are wrong, they will not listen to the reasoning. I am not sure how to handle these stubborn, fist in my face people. It is clear they are punishing me for some purpose. What that purpose is, I have no idea.
The idea of punishing someone by physicians is totally crazy to me.
Brief Answer:
Read below
Detailed Answer:
I am sorry about the frustrating situation you are in.
I find it hard to believe that that psychiatrist wants to punish you. There is no reason for him or any physician to do that. Medicine is difficult, any doctor can make mistakes in his diagnosis, that I concede, but that doesn't mean it is done intentionally.
If you do not agree with his diagnosis then you should seek evaluation from another specialist, asking a second opinion is your right. Don't do that claiming right away that doctors want to punish you though, we are human and when we perceive a hostile patient it certainly doesn't help our performance. Furthermore it may contribute to you being seen as a non-compliant non-trusting patient and your thoughts being interpreted as delusions.
I believe that talking calmly to them is the only way of letting them see your point of view, so that they can take your symptoms seriously and ask for appropriate tests to make a diagnosis.
Read below
Detailed Answer:
I am sorry about the frustrating situation you are in.
I find it hard to believe that that psychiatrist wants to punish you. There is no reason for him or any physician to do that. Medicine is difficult, any doctor can make mistakes in his diagnosis, that I concede, but that doesn't mean it is done intentionally.
If you do not agree with his diagnosis then you should seek evaluation from another specialist, asking a second opinion is your right. Don't do that claiming right away that doctors want to punish you though, we are human and when we perceive a hostile patient it certainly doesn't help our performance. Furthermore it may contribute to you being seen as a non-compliant non-trusting patient and your thoughts being interpreted as delusions.
I believe that talking calmly to them is the only way of letting them see your point of view, so that they can take your symptoms seriously and ask for appropriate tests to make a diagnosis.
Above answer was peer-reviewed by :
Dr. Raju A.T
I recently spoke with the psychiatrist about 7 years after leaving his "care." His anger and malfeasance were blatant.
He truly hates me. Why? I honestly think he needs serious medical care. I am not diagnosing. But anger and hatred are hard to miss.
He has sanctions against him (since 1988) by the state for having sex with his female patients. I would go after him and knock his license out, but his attacks are so vicious, I doubt the state would believe me.
Yes, there truly are people like this who "practice medicine." The reason many docs get bad raps is you allow people like this in your midst. Engineers don't do this. Scientists publish very hard criticisms and even write to the presidents of universities.
But who in medicine determines quality of care or malfeasance like this. When I say who, what body of physicians that is supported by the bulk of physicians. NONE.
But this is ONLY ONE of several system problems. You honestly thing you can lie and not have your mind turned inside out by it. You are out of touch with reality.
Yes doctors lie. They do it for many reasons. Nearly all lies are wrong morally and ethically.
How do I counter this persons lies. But worse, many succeeding physicians think it is their duty to amplify the lies. I am not kidding one bit.
I plan to start filing complaints and pressing for prosecution. Crooks. They intentionally put lies in my records. Things that I have validated and can be validated by prosecution.
He truly hates me. Why? I honestly think he needs serious medical care. I am not diagnosing. But anger and hatred are hard to miss.
He has sanctions against him (since 1988) by the state for having sex with his female patients. I would go after him and knock his license out, but his attacks are so vicious, I doubt the state would believe me.
Yes, there truly are people like this who "practice medicine." The reason many docs get bad raps is you allow people like this in your midst. Engineers don't do this. Scientists publish very hard criticisms and even write to the presidents of universities.
But who in medicine determines quality of care or malfeasance like this. When I say who, what body of physicians that is supported by the bulk of physicians. NONE.
But this is ONLY ONE of several system problems. You honestly thing you can lie and not have your mind turned inside out by it. You are out of touch with reality.
Yes doctors lie. They do it for many reasons. Nearly all lies are wrong morally and ethically.
How do I counter this persons lies. But worse, many succeeding physicians think it is their duty to amplify the lies. I am not kidding one bit.
I plan to start filing complaints and pressing for prosecution. Crooks. They intentionally put lies in my records. Things that I have validated and can be validated by prosecution.
Brief Answer:
Read below
Detailed Answer:
I read your story carefully and feel really sorry about what you have been through. While I can listen and understand you, it's hard for me to make specific recommendations. When I started answering your question it was as it seemed regarding a neurological condition like MS, but this is a little out of my competences as a neurologist.
I am a little uncertain about how things work in the US, but in my country there is a body supported by physicians which is the Medical Order. It accepts and reviews complaints regarding ethical issues from patients as well. Also for doctors working in university clinics universities play a role just as for other scientists. But as I said I haven't exercised in the US.
Read below
Detailed Answer:
I read your story carefully and feel really sorry about what you have been through. While I can listen and understand you, it's hard for me to make specific recommendations. When I started answering your question it was as it seemed regarding a neurological condition like MS, but this is a little out of my competences as a neurologist.
I am a little uncertain about how things work in the US, but in my country there is a body supported by physicians which is the Medical Order. It accepts and reviews complaints regarding ethical issues from patients as well. Also for doctors working in university clinics universities play a role just as for other scientists. But as I said I haven't exercised in the US.
Above answer was peer-reviewed by :
Dr. Remy Koshy
You can be VERY helpful.
But only if you know the history. Simple, given the electronic record system it is not possible for me to go anywhere in the us and be treated as a real person.
Therefore, if I am to find someone who will be able to help me, they will be outside the US. India?
Did I say I wouldn't travel to India? Or you name it?
Dr Olsi Taka, You may be from Finland or Russia. I don't care where I go to get healed. I did ask for a rheumatologist. You are a perfect doctor in my opinion.
Read your answer."I read your story carefully and feel really sorry about what you have been through." Dr. You are a human understanding the pain of another human.
That is where all medicine should begin. I give you full credit where everyone in the US has failed me. What country do you practice medicine in. Is it possible for me to come to where you practice medicine? Or to someone you have high confidence it.
The following symptoms. ALL are "MS like" symptoms. The likelihood of me having MS is near zero. I do have a inkling of what the start may have been. I also read all the scientific research literature. Remember. Scientist.
Do not worry. I am not here to show you up. Show anyone how smart I am. Smart does not exist. Your gift to understand and listen is far better than your IQ. You likely have a very high IQ. Me? I don't care. I do know, but it doesn't matter.
What matters is that you listened.
There is a cluster of diseases that have MS like symptoms. You know better than I. But there even more interesting problems here. As a neurologist, you are the place I start. You have the best training to help me.
Now. What is our next step?
But only if you know the history. Simple, given the electronic record system it is not possible for me to go anywhere in the us and be treated as a real person.
Therefore, if I am to find someone who will be able to help me, they will be outside the US. India?
Did I say I wouldn't travel to India? Or you name it?
Dr Olsi Taka, You may be from Finland or Russia. I don't care where I go to get healed. I did ask for a rheumatologist. You are a perfect doctor in my opinion.
Read your answer."I read your story carefully and feel really sorry about what you have been through." Dr. You are a human understanding the pain of another human.
That is where all medicine should begin. I give you full credit where everyone in the US has failed me. What country do you practice medicine in. Is it possible for me to come to where you practice medicine? Or to someone you have high confidence it.
The following symptoms. ALL are "MS like" symptoms. The likelihood of me having MS is near zero. I do have a inkling of what the start may have been. I also read all the scientific research literature. Remember. Scientist.
Do not worry. I am not here to show you up. Show anyone how smart I am. Smart does not exist. Your gift to understand and listen is far better than your IQ. You likely have a very high IQ. Me? I don't care. I do know, but it doesn't matter.
What matters is that you listened.
There is a cluster of diseases that have MS like symptoms. You know better than I. But there even more interesting problems here. As a neurologist, you are the place I start. You have the best training to help me.
Now. What is our next step?
Brief Answer:
Read below
Detailed Answer:
Thank you for your appreciatiative words.
I live and exercise in Albania. Of course if you want to come here you'd be welcome. However you should think that carefully. As a foreigner you wouldn't be admitted in public hospitals (only emergency cases are temporarily admitted till they can be transported to their country). So any test and procedure you'd make would have to be done in private clinics/hospitals, as a result costing a lot (neurological diagnoses usually requires expensive imaging and cerebrospinal fluid tests apart from history and physical exam).
Also, there wouldn't be guarantees, I wouldn't want to drag you here under false pretenses. Up to now I can't even say if you have a neurological condition, if I would be able to help you. You've yet to mention a single word during our exchange regarding your symptoms, you haven't described that. Saying simply MS like is not enough as MS can manifest with many different symptoms. From reading another query you've made on this site I saw that you suspect to have a parasitosis involving the skin. My expertise in that field goes as far as parasites involving the nervous system, if tests exclude involvement of nervous system I wouldn't be able to offer much help in managing other types of parasitosis.
Another reason I am reluctant to encourage you to come here is that neurological conditions often repeat follow up, even if a potentially curable cause such as infections. So it would be advisable to be followed in country of residence. Remember also that even considering your reserves towards US doctors from a human point of view, in my country we view the US as one of the countries with the highest level of excellency in medicine, the country where actually albanians who can afford it go to get the best care. So my recommendation would still ask for help from a different clinic in the US. If despite all the points I make above you still want to come to Albania as I said you'd be welcome.
Read below
Detailed Answer:
Thank you for your appreciatiative words.
I live and exercise in Albania. Of course if you want to come here you'd be welcome. However you should think that carefully. As a foreigner you wouldn't be admitted in public hospitals (only emergency cases are temporarily admitted till they can be transported to their country). So any test and procedure you'd make would have to be done in private clinics/hospitals, as a result costing a lot (neurological diagnoses usually requires expensive imaging and cerebrospinal fluid tests apart from history and physical exam).
Also, there wouldn't be guarantees, I wouldn't want to drag you here under false pretenses. Up to now I can't even say if you have a neurological condition, if I would be able to help you. You've yet to mention a single word during our exchange regarding your symptoms, you haven't described that. Saying simply MS like is not enough as MS can manifest with many different symptoms. From reading another query you've made on this site I saw that you suspect to have a parasitosis involving the skin. My expertise in that field goes as far as parasites involving the nervous system, if tests exclude involvement of nervous system I wouldn't be able to offer much help in managing other types of parasitosis.
Another reason I am reluctant to encourage you to come here is that neurological conditions often repeat follow up, even if a potentially curable cause such as infections. So it would be advisable to be followed in country of residence. Remember also that even considering your reserves towards US doctors from a human point of view, in my country we view the US as one of the countries with the highest level of excellency in medicine, the country where actually albanians who can afford it go to get the best care. So my recommendation would still ask for help from a different clinic in the US. If despite all the points I make above you still want to come to Albania as I said you'd be welcome.
Above answer was peer-reviewed by :
Dr. Prasad
Dr. Taka,
Your advice always makes sense to me. The trick then is how to turn the situation for me in the US around.
Not having access to hospitals would be almost prohibitive. As I understand the processes used for diagnosing some of those MS like diseases, spinal taps are done and then the tests are very expensive. In the US, they require preapproval.
Makes sense. I don't want to waste money. It doesn't matter if it is mine or not.
Your point though about follow up is the best one. You are 100% correct. I'm still looking for answers.
From the history and symptoms, I personally suspect Lyme disease. But it has been 5 years. My wife is so sick with muscle pain, she is disabled. Still, the doctors won't even consider the Lyme disease or the possible ways to diagnose it at this late stage.
I suspect I got if from her through intimacy. Lyme disease is an STD.
Your advice always makes sense to me. The trick then is how to turn the situation for me in the US around.
Not having access to hospitals would be almost prohibitive. As I understand the processes used for diagnosing some of those MS like diseases, spinal taps are done and then the tests are very expensive. In the US, they require preapproval.
Makes sense. I don't want to waste money. It doesn't matter if it is mine or not.
Your point though about follow up is the best one. You are 100% correct. I'm still looking for answers.
From the history and symptoms, I personally suspect Lyme disease. But it has been 5 years. My wife is so sick with muscle pain, she is disabled. Still, the doctors won't even consider the Lyme disease or the possible ways to diagnose it at this late stage.
I suspect I got if from her through intimacy. Lyme disease is an STD.
Brief Answer:
Read below
Detailed Answer:
While there are some studies indicating sexual transmission is possible, it is still not an accepted route, more evidence is needed on that regard. However it is not uncommon for it to be found in a couple, members of a household are exposed to similar environmental factors, so could both get it from the same tic bites.
However before getting to that part, the diagnosis has first to be confirmed, it is only a possibility for now. So no matter how hard I think about it, there is no getting around US doctors even considering your disappointment at them. You should seek a new doctor in order for appropriate tests to be prescribed. Since you have been having issues in your relationship with doctors it is important that you maintain your calm. Try to discuss with them your symptoms. There is no need to discuss your problems with the previous doctors. They do not add anything useful, do not aid the diagnostic process. As I said before doctors are human, they do not feel in a position of power as many patients might think. If you concentrate too much on issues with previous doctors they might get defensive and reluctant to work with you, especially in a country like the US where I hear lawsuit against doctors are such a common occurrence. So again try to describe your symptoms in a calm and collected manner and let them examine you and express their judgment.
Read below
Detailed Answer:
While there are some studies indicating sexual transmission is possible, it is still not an accepted route, more evidence is needed on that regard. However it is not uncommon for it to be found in a couple, members of a household are exposed to similar environmental factors, so could both get it from the same tic bites.
However before getting to that part, the diagnosis has first to be confirmed, it is only a possibility for now. So no matter how hard I think about it, there is no getting around US doctors even considering your disappointment at them. You should seek a new doctor in order for appropriate tests to be prescribed. Since you have been having issues in your relationship with doctors it is important that you maintain your calm. Try to discuss with them your symptoms. There is no need to discuss your problems with the previous doctors. They do not add anything useful, do not aid the diagnostic process. As I said before doctors are human, they do not feel in a position of power as many patients might think. If you concentrate too much on issues with previous doctors they might get defensive and reluctant to work with you, especially in a country like the US where I hear lawsuit against doctors are such a common occurrence. So again try to describe your symptoms in a calm and collected manner and let them examine you and express their judgment.
Above answer was peer-reviewed by :
Dr. Vaishalee Punj
Dr. Taka,
I hold you in very high regard. I am deeply familiar with Lyme disease leading edge research as well as a vital set of knowledge in experimental design.
It is true there was an original study that showed that it was impossible Lyme disease to be sexually transmitted. I looked at the study and could tell it was a cook job just from the terrible design. This was the first study. It was funded by the CDC.
Since then there has been a series of well designed experiments. The latest design has been independently validated by replication. These tests show unequivocally, Lyme disease is an STD. Unfortunately, It is very common for a person to have undiagnosed Lyme disease. Then if they are sexually active, they share it.
I am 80% certain that I got whatever it is from my wife. I am about 60% sure that she became infected with Lyme disease while she lived in NJ. The house she lived in was in a heavily wooded area. There was a small dog that was in and out of the house. It was about a month after she moved into the house that she developed severe headaches. Then it was stiffness and pain in the knees... on and on. NJ is a hotbed of Lyme infections in the US.
NONE of that makes a diagnosis. It does make me suspicious. In addition, I never make diagnosis on myself or family. NEVER.
The CDC in the US has been in the forefront of spreading disinformation about various element in the body of knowledge of Lyme. As you well know, they also share excellent validated research work on Lyme.
In all cases, follow the money.
Thank you for your help. You are a breath of fresh air.
I hold you in very high regard. I am deeply familiar with Lyme disease leading edge research as well as a vital set of knowledge in experimental design.
It is true there was an original study that showed that it was impossible Lyme disease to be sexually transmitted. I looked at the study and could tell it was a cook job just from the terrible design. This was the first study. It was funded by the CDC.
Since then there has been a series of well designed experiments. The latest design has been independently validated by replication. These tests show unequivocally, Lyme disease is an STD. Unfortunately, It is very common for a person to have undiagnosed Lyme disease. Then if they are sexually active, they share it.
I am 80% certain that I got whatever it is from my wife. I am about 60% sure that she became infected with Lyme disease while she lived in NJ. The house she lived in was in a heavily wooded area. There was a small dog that was in and out of the house. It was about a month after she moved into the house that she developed severe headaches. Then it was stiffness and pain in the knees... on and on. NJ is a hotbed of Lyme infections in the US.
NONE of that makes a diagnosis. It does make me suspicious. In addition, I never make diagnosis on myself or family. NEVER.
The CDC in the US has been in the forefront of spreading disinformation about various element in the body of knowledge of Lyme. As you well know, they also share excellent validated research work on Lyme.
In all cases, follow the money.
Thank you for your help. You are a breath of fresh air.
Brief Answer:
Thank you!
Detailed Answer:
You're welcome! I don't know if I've been of much help as much has to be done, more than anything have been lending a sympathetic ear. However thank your for your kind words.
Thank you!
Detailed Answer:
You're welcome! I don't know if I've been of much help as much has to be done, more than anything have been lending a sympathetic ear. However thank your for your kind words.
Above answer was peer-reviewed by :
Dr. Remy Koshy
Answered by
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