1. < Autoimmune Diseases

Would Feel comforted if others share similar autoimmune symptoms

Posted by rose2 @rose2, Feb 20, 2017

Hi everyone I am really happy that I've stumbled on this site and I'm praying that someone out there could identify with the symptoms that I'm presently exhibiting. I am a 37 year old female and for the past 2 months I have been having severe symptoms which I believe might be an autoimmune disease.I say autoimmune disease because roughly two years ago my general practitioner (GP) had me do a blood test for ANA; and so said the result came back positive.Prior the test I suffered tremendous swelling and biting and stinging sensation in my feet. The veins on my feet would experience severe pressure and I would also notice swelling in my knees- particularly the right one. Sitting and standing for too long would also caused swelling in my feet. Sadly,these symptoms went on for a bit more than five years without being diagnosed although treatments were given. However, two months ago I started complaining with numbness in my finger tips,toes and heels accompanied by this symptoms was extreme weakness in the joint area of toes, fingers and knees.Every joint in my body started swelling along with pain
and I also noted burning of the skin and major joints like my knees and elbow.my mouth including tongue and lips were also being affected as they were often itching or burning.To date the symptoms are still persistent and severe that I presently still on medical leave for a month plus. Because my GP tested for lupus,Anti-Jo1 and few other critical autoimmune which were found negative he referred me to a rheumatologist. Since I live in a small Caribbean island I had to seek that attention in one of the french neighboring islands. However, the specialist there had me do some of the same test including testing for ANA and he is now declaring that I do not have an autoimmune condition so my symptoms remain un-diagnosed.
I am shattered by the thought that I have all of these symptoms some of which are quite apparent and yet still I am not able to gain diagnosis nor treated for my medical situation. In this regards I would feel really blessed if anyone reading this discussion identify with my situation,either based on sharing similar symptoms or knowledgeable of what might be the possible cause. Thanks for your patience to listen to my plight and I looking forwards to some responses.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 21, 2017

Welcome to Connect, @rose2,

We are so glad you found us; you will find many members here, who share similar symptoms, and are ready to support you with some answers.

I think a lot of people can relate to what you are describing, especially @kmintx, @luladavis, @rabbit10, @emilyanne, @ridgerunner, @ujeeniack, @joannem, @medi7054, @fleure, @beckypain66, @philio66, @martid, @pinkmk, @twinky, @gailfaith, @gman007, @bobsconnect, @grandma41, @robertlclark, @painwarrior, @salena54

I'm confident, our Mentor @johnbishop will be able to offer valuable insight, as well.

@rose2, how are you coping with the pain now?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 22, 2017

Hello @rose2, welcome to Connect. I too am glad you found us. Autoimmune conditions can be difficult to diagnose and have many causes. It sounds like you are doing a good job searching for answers. Hopefully others that share some of your symptoms will join in the conversation. I can relate to parts of your symptoms with my first occurrence of polymyalgia rheumatica in 2007. I had pain and stiffness in all of my joints and let it get so bad that I could not walk before going to the doctor. I had to use a walker to navigate to my appointment and found out that I had PMR. They also drained fluid from my right knee and gave me an injection (steroids I think) which gave immediate relief of my knee pain. The rheumatologist started me on 20 mg prednisone and by the afternoon I no longer needed the walker to get around. It took me 3 years to finally get off of prednisone and my PMR went into remission until this past August.

Along the way I also had numbness and tingling in both feet and was told it was damaged nerves but I didn't push for a diagnosis (my mistake) because the first doctor told me if they determined it was damaged nerves there was nothing that could be done to repair the nerves. In March of 2016 I decided I wanted to know the diagnosis and I am glad I pursued it. After several MRIs and an EMG, I met with a neurologist and found out I have idiopathic small fiber peripheral neuropathy. I'm one of the lucky 20 to 30% with SFPN that have the numbness without the pain. This started my search to find out more and what is available for treatments. I think the key to getting help is to learn as much as you can by doing your own research (you're doing that now!!) and using the research to ask better questions when working with your doctor. I don't want to overwhelm you with information but it sounds like one of your symptoms could be peripheral neuropathy (PN) - numbness in fingertips, toes, etc. It normally starts in the hands and feet and can progressively get worse.

Here are some links that I hope will help:

Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm

NIH PN Fact Sheet - http://bit.ly/2kIPey3

Diagnosing PN - http://bit.ly/2lpduEN

Good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

How to avoid Quacks and Snake Oil Treatments
http://mayocl.in/2gcdDNt

Here is one of the best (and easy to understand) explanations
of SFPN: https://youtu.be/S1qt-ueIP6

Keep asking questions!

John

REPLY
Gary, Alumni Mentor | @gman007 | Feb 23, 2017

Hi Rose! I am glad you found this site and I hope you not only find support, but some actionable help for your symptoms. I am no as isolated as you are, but am in a rural area where knowledge of pancreatitis and volume treatment is very limited. It was thought for many years to be an alcoholics disease and received very little attention from the medical community because it was believed that most of the patients were simply going to gradually kill themselves. I happen to be one who was a functioning alcoholic with a congenital defect in my pancreas. I could have remained asymptomatic for life from the defect as many do, but I, almost literally, poured gas on a fire, and was hospitalized the first time in 2006 - almost exactly 12 yrs. ago - with acute pancreatitis. to shorten things up, I had two more hospitalizations and lots of testing before I was diagnosed with chronic pancreatitis. I had stopped drinking after losing my gall bladder and still having acute attacks - God only had to hit me with a 2x4 twice to really get my attention. My second hospitalization lasted 15 days and for the first time the doctor said death in discussing my symptoms and life style. I have a local gastroenterologist who monitors my conditions and send me to the Medical University of SC when my pain becomes unmanageable. This is a high volume center (not to the extent of Mayo, but widely recognized as having some of the best docs for my condition). The reason I say high volume is that it is incredibly important, in my humble opinion, that you find a doctor who sees your condition more than once every 2-3 months. I don't know that it is possible, but if you could get to the Mayo clinic facility in Jacksonville FL, they typically have a high volume doc in almost everything or something that would at least touch on your condition. My understanding is that they see you, perform every kind of test potentially necessary, and have a committee who evaluates your symptoms and what they have been able to learn and send you back home with a diagnosis and treatment plan. They can speak to this better than I, but a facility that works in this manner would seem to be the best for you and your where you live as you could probably have a local doctor treat you in the manner the high volume center recommends. beyond that, I think I would try to circulate your story in the medical community where you live and maybe a doctor that you have not seen would have a light bulb come on for them. I know there is a doc somewhere near you who would love the challenge because they do what they do to make people feel better, not for accolades or economic security. I have met many of them, so keep searching and as John suggested, do as much research as is possible on your symptoms. I am not boasting, but I suspect that I know far more than many local docs about the pancreas and pancreatitis. If that is not their field of specialty, that is probably as it should be as it is my body and life that I hope to prolong. All the best to you and please keep us updated.

REPLY
2 replies
rose2 | @rose2 | Feb 24, 2017
In reply to @gman007 "Hi Rose! I am glad you found this site and I hope you not only find..." + (show)
@gman007

Hi Rose! I am glad you found this site and I hope you not only find support, but some actionable help for your symptoms. I am no as isolated as you are, but am in a rural area where knowledge of pancreatitis and volume treatment is very limited. It was thought for many years to be an alcoholics disease and received very little attention from the medical community because it was believed that most of the patients were simply going to gradually kill themselves. I happen to be one who was a functioning alcoholic with a congenital defect in my pancreas. I could have remained asymptomatic for life from the defect as many do, but I, almost literally, poured gas on a fire, and was hospitalized the first time in 2006 - almost exactly 12 yrs. ago - with acute pancreatitis. to shorten things up, I had two more hospitalizations and lots of testing before I was diagnosed with chronic pancreatitis. I had stopped drinking after losing my gall bladder and still having acute attacks - God only had to hit me with a 2x4 twice to really get my attention. My second hospitalization lasted 15 days and for the first time the doctor said death in discussing my symptoms and life style. I have a local gastroenterologist who monitors my conditions and send me to the Medical University of SC when my pain becomes unmanageable. This is a high volume center (not to the extent of Mayo, but widely recognized as having some of the best docs for my condition). The reason I say high volume is that it is incredibly important, in my humble opinion, that you find a doctor who sees your condition more than once every 2-3 months. I don't know that it is possible, but if you could get to the Mayo clinic facility in Jacksonville FL, they typically have a high volume doc in almost everything or something that would at least touch on your condition. My understanding is that they see you, perform every kind of test potentially necessary, and have a committee who evaluates your symptoms and what they have been able to learn and send you back home with a diagnosis and treatment plan. They can speak to this better than I, but a facility that works in this manner would seem to be the best for you and your where you live as you could probably have a local doctor treat you in the manner the high volume center recommends. beyond that, I think I would try to circulate your story in the medical community where you live and maybe a doctor that you have not seen would have a light bulb come on for them. I know there is a doc somewhere near you who would love the challenge because they do what they do to make people feel better, not for accolades or economic security. I have met many of them, so keep searching and as John suggested, do as much research as is possible on your symptoms. I am not boasting, but I suspect that I know far more than many local docs about the pancreas and pancreatitis. If that is not their field of specialty, that is probably as it should be as it is my body and life that I hope to prolong. All the best to you and please keep us updated.

Jump to this post

Hi gman thanks so very much for the information that you have related to me.It was definitely informative as well as inspiring.However, I would like to inform you that as recent as today some break through was actually made. One day after I left the french island I was called this morning to be informed that the doctor had received some results. The result is being forwarded to my local general practitioner so as soon as tomorrow I should visit my doctor to know the diagnosis. I will definitely keep you updated on the latest development.

Thanks once again for the tremendous support!

REPLY
rose2 | @rose2 | Feb 24, 2017
In reply to @kanaazpereira "Welcome to Connect, @rose2, We are so glad you found us; you will find many members..." + (show)
@kanaazpereira

Welcome to Connect, @rose2,

We are so glad you found us; you will find many members here, who share similar symptoms, and are ready to support you with some answers.

I think a lot of people can relate to what you are describing, especially @kmintx, @luladavis, @rabbit10, @emilyanne, @ridgerunner, @ujeeniack, @joannem, @medi7054, @fleure, @beckypain66, @philio66, @martid, @pinkmk, @twinky, @gailfaith, @gman007, @bobsconnect, @grandma41, @robertlclark, @painwarrior, @salena54

I'm confident, our Mentor @johnbishop will be able to offer valuable insight, as well.

@rose2, how are you coping with the pain now?

Jump to this post

Hi kanaazpereira thanks so very much for openly accepting me as a new addition to the team;it means the world. I'm certain that the support will be overwhelming and at the same time beneficial.

I look forward to the various sharing and medical recommendations.

REPLY
Gary, Alumni Mentor | @gman007 | Feb 24, 2017
In reply to @gman007 "Hi Rose! I am glad you found this site and I hope you not only find..." + (show)
@gman007

Hi Rose! I am glad you found this site and I hope you not only find support, but some actionable help for your symptoms. I am no as isolated as you are, but am in a rural area where knowledge of pancreatitis and volume treatment is very limited. It was thought for many years to be an alcoholics disease and received very little attention from the medical community because it was believed that most of the patients were simply going to gradually kill themselves. I happen to be one who was a functioning alcoholic with a congenital defect in my pancreas. I could have remained asymptomatic for life from the defect as many do, but I, almost literally, poured gas on a fire, and was hospitalized the first time in 2006 - almost exactly 12 yrs. ago - with acute pancreatitis. to shorten things up, I had two more hospitalizations and lots of testing before I was diagnosed with chronic pancreatitis. I had stopped drinking after losing my gall bladder and still having acute attacks - God only had to hit me with a 2x4 twice to really get my attention. My second hospitalization lasted 15 days and for the first time the doctor said death in discussing my symptoms and life style. I have a local gastroenterologist who monitors my conditions and send me to the Medical University of SC when my pain becomes unmanageable. This is a high volume center (not to the extent of Mayo, but widely recognized as having some of the best docs for my condition). The reason I say high volume is that it is incredibly important, in my humble opinion, that you find a doctor who sees your condition more than once every 2-3 months. I don't know that it is possible, but if you could get to the Mayo clinic facility in Jacksonville FL, they typically have a high volume doc in almost everything or something that would at least touch on your condition. My understanding is that they see you, perform every kind of test potentially necessary, and have a committee who evaluates your symptoms and what they have been able to learn and send you back home with a diagnosis and treatment plan. They can speak to this better than I, but a facility that works in this manner would seem to be the best for you and your where you live as you could probably have a local doctor treat you in the manner the high volume center recommends. beyond that, I think I would try to circulate your story in the medical community where you live and maybe a doctor that you have not seen would have a light bulb come on for them. I know there is a doc somewhere near you who would love the challenge because they do what they do to make people feel better, not for accolades or economic security. I have met many of them, so keep searching and as John suggested, do as much research as is possible on your symptoms. I am not boasting, but I suspect that I know far more than many local docs about the pancreas and pancreatitis. If that is not their field of specialty, that is probably as it should be as it is my body and life that I hope to prolong. All the best to you and please keep us updated.

Jump to this post

Rose, that is incredible inspiring news. Just from an emotional viewpoint, it is so relieving to finally have a diagnosis. Sometimes they are exactly what we were hoping to hear, but even if it is not, we at least know what to attack with all of our energy that may have been misplaced before. A prayer that get great news or news that gives you direction you have not had. Let us know when you are comfortable doing so.
Gary

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