no diagnosis - what next

Posted by justwrite @justwrite, Tue, Oct 29 6:05pm

dont know where to turn; arms and legs swell twice their size. three months now. Not fluid. Not any organ failure, not venous insufficiency. have seen cardiologist, vascular surgeon, gastro [for liver, kidney]. when I wake up, I have regular skinny legs. within minutes, swollen twice their size.

Do your legs swell after standing up? If you stay in bed do they swell? If they do swell how long after you awake does it happen?

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Hello @justwrite and welcome to Mayo Connect. I'm glad that you posted your concerns here on Connect. As you may know, Mayo Connect cannot offer diagnostic help. We are patients, like yourself, who can share our own experiences and we can offer you support and encouragement during the process of getting a diagnosis from your medical team.

You do not mention your age or any other health problems you have. However, I'm wondering if you have seen an endocrinologist. These are great doctors who have a tremendous knowledge of the body system and can often put together the puzzle pieces of difficult to diagnose problems. Have you seen an endocrinologist yet?

Have any other family members had problems such as this?

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@justwrite– Good morning and welcome to Mayo Connect. As @hopeful33250 stated we can not offer you a diagnosis. What proceeded these awful, and I imagine very painful swelling? When do these occur during the day? Just at night? Have you changed what you eat for dinner or as a snack before bed?

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@justwrite What makes you feel the swelling is not fluid? If there is swelling there has to be fluid there I would think. I had terrible swelling in my feet and ankles at one point, much worse when traveling or when I had much sodium.
I presume it is after you get up and your weight is on your legs, that they swell. That really is a conundrum, particularly since you have seen numerous doctors and none have figured it out. I went through a similar problem, the reason my problem was not diagnosed was that none of the doctors were adding up other symptoms that seemed to be unrelated but actually were not.
I have said numerous times on this forum, I will never again rely on local doctors to figure something out. If you have not seen doctors at a major medical facility, preferably a teaching hospital, then go to one. It took almost a year and a half for me to get a diagnosis. That will never happen again.
JK

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@justwrite My friend has the same thing in her legs Finally diagnosed with lymphedema .Have you asked your Dr about this?

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@lioness

@justwrite My friend has the same thing in her legs Finally diagnosed with lymphedema .Have you asked your Dr about this?

Jump to this post

@justwrite, @lioness, @contentandwell, I think it is time to call John in on this one. @johnbishop….can you shed some light on @justwrite's issue? Thanks, Chris, et al.

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Hello @justwrite, I would like to add my Welcome to Connect along with the other members. As members we are not able to provide a diagnosis or suggest treatments but we can share our symptoms and what has helped us. I had swelling similar to yours but only in my legs and mostly my right leg and ankle. I was diagnosed with lymphedema and now wear 20 – 30 mg compressions socks to help with the swelling during the day. You mentioned seeing a cardiologist, vascular surgeon, and gastro [for liver, kidney] doctor to figure out what is causing the swelling. Your symptoms sound a lot like lymphedema.
It's easier for the body to push the lymph fluids when you are laying down. What does the lymphatic system do? — https://www.medicalnewstoday.com/articles/303087.php

Did you have the lymphoscintigraphy test where they inject you with the radioactive dye and check how lymphatic system is working?

Lymphoscintigraphy – https://www.radiologyinfo.org/en/info.cfm?pg=lympho

Mayo Clinic has mory information on diagnosing and treating Lymphedema here:
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
Mayo Clinic is very good at diagnosing hard to diagnosis conditions. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@merpreb

@justwrite– Good morning and welcome to Mayo Connect. As @hopeful33250 stated we can not offer you a diagnosis. What proceeded these awful, and I imagine very painful swelling? When do these occur during the day? Just at night? Have you changed what you eat for dinner or as a snack before bed?

Jump to this post

It's been going on since August. Starts the minute I get up in the morning–both legs and right arm. Dont eat salt, low fat diet. Doctors say it's not a big deal. It is to me — never had before. Disconcerting

REPLY
@johnbishop

Hello @justwrite, I would like to add my Welcome to Connect along with the other members. As members we are not able to provide a diagnosis or suggest treatments but we can share our symptoms and what has helped us. I had swelling similar to yours but only in my legs and mostly my right leg and ankle. I was diagnosed with lymphedema and now wear 20 – 30 mg compressions socks to help with the swelling during the day. You mentioned seeing a cardiologist, vascular surgeon, and gastro [for liver, kidney] doctor to figure out what is causing the swelling. Your symptoms sound a lot like lymphedema.
It's easier for the body to push the lymph fluids when you are laying down. What does the lymphatic system do? — https://www.medicalnewstoday.com/articles/303087.php

Did you have the lymphoscintigraphy test where they inject you with the radioactive dye and check how lymphatic system is working?

Lymphoscintigraphy – https://www.radiologyinfo.org/en/info.cfm?pg=lympho

Mayo Clinic has mory information on diagnosing and treating Lymphedema here:
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
Mayo Clinic is very good at diagnosing hard to diagnosis conditions. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Jump to this post

HI, thanks for sharing. Vascular surgeon says it's not lymphedema but I havent had a specific test. Each dr ordered tests per their specialty. Carido said it's not your heart but let's do an echo; gastro said it's your heart not liver/kidney but let's do a CT. VAscualr guy said it's none of those and not aging. Primary said it's low protein — no. I've had very low protein before due to Crohn's disease. Never happened before. I've stopper worrying but would like to know what's up

REPLY
@hopeful33250

Hello @justwrite and welcome to Mayo Connect. I'm glad that you posted your concerns here on Connect. As you may know, Mayo Connect cannot offer diagnostic help. We are patients, like yourself, who can share our own experiences and we can offer you support and encouragement during the process of getting a diagnosis from your medical team.

You do not mention your age or any other health problems you have. However, I'm wondering if you have seen an endocrinologist. These are great doctors who have a tremendous knowledge of the body system and can often put together the puzzle pieces of difficult to diagnose problems. Have you seen an endocrinologist yet?

Have any other family members had problems such as this?

Jump to this post

Hi I called an endocrinologist and the nurse said that limb swelling wasn't an issue for an endo. No other family members have had. I have Crohn's disease and it took me 5 years to get diagnosed — had all the tests and nothing showed. Only symptom I had was partial blockage, which would send me to ER. Finally a new gastro suggested exploratory surgery and they found it. So knowing I was atypical in presentation with that, makes me wonder about this. My gastro was awesome but has retired. I might email him. He's literally a genius.

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@stuckonu

Do your legs swell after standing up? If you stay in bed do they swell? If they do swell how long after you awake does it happen?

Jump to this post

When I wake up in the morning I have my regular skinny legs. Within minutes of standing they swell, and my right arm swells. Lasts all day, whether I sit, stand, put my feet up while I work. All dr.s have said it's not fluid.

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@justwrite

HI, thanks for sharing. Vascular surgeon says it's not lymphedema but I havent had a specific test. Each dr ordered tests per their specialty. Carido said it's not your heart but let's do an echo; gastro said it's your heart not liver/kidney but let's do a CT. VAscualr guy said it's none of those and not aging. Primary said it's low protein — no. I've had very low protein before due to Crohn's disease. Never happened before. I've stopper worrying but would like to know what's up

Jump to this post

@justwrite you are right to want to know what's up with the swelling. Your body is telling you something is wrong as the swelling is not normal and something is causing it. If it were me, I would keep asking questions of my primary doctor until I find the answer or I would go to a teaching hospital or large healthcare facility like Mayo Clinic which hopefully could give me the answer.

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@justwrite

Hi I called an endocrinologist and the nurse said that limb swelling wasn't an issue for an endo. No other family members have had. I have Crohn's disease and it took me 5 years to get diagnosed — had all the tests and nothing showed. Only symptom I had was partial blockage, which would send me to ER. Finally a new gastro suggested exploratory surgery and they found it. So knowing I was atypical in presentation with that, makes me wonder about this. My gastro was awesome but has retired. I might email him. He's literally a genius.

Jump to this post

@justwrite– Your symptoms might be from Crohn’s disease. Swollen joints can cause your limbs to swell as well as your internal organs.
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
https://www.crohnscolitisfoundation.org/what-is-crohns-disease/symptoms

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@justwrite

It's been going on since August. Starts the minute I get up in the morning–both legs and right arm. Dont eat salt, low fat diet. Doctors say it's not a big deal. It is to me — never had before. Disconcerting

Jump to this post

@justwrite I would certainly ask for the test that @johnbishop suggested . I hope you do go to a university ,teaching hospital If you are close to Mayo clinic I would go there if you can . Lymphedema is hard to diagnose but the symptoms you discuss certainly sound like it .Be proactive in this matter . It is your body .

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@contentandwell

@justwrite What makes you feel the swelling is not fluid? If there is swelling there has to be fluid there I would think. I had terrible swelling in my feet and ankles at one point, much worse when traveling or when I had much sodium.
I presume it is after you get up and your weight is on your legs, that they swell. That really is a conundrum, particularly since you have seen numerous doctors and none have figured it out. I went through a similar problem, the reason my problem was not diagnosed was that none of the doctors were adding up other symptoms that seemed to be unrelated but actually were not.
I have said numerous times on this forum, I will never again rely on local doctors to figure something out. If you have not seen doctors at a major medical facility, preferably a teaching hospital, then go to one. It took almost a year and a half for me to get a diagnosis. That will never happen again.
JK

Jump to this post

thanks for response. I have crohns disease and it took me 5 years to get diagnosed because my symptoms were atypical. So I will keep going but not sure who to turn to next — probably a teaching hospital

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