Autoimmune diagnosing problem

Posted by Brie @brie87144, Jul 20, 2016

I don’t know what to do at this point. I’ll give some of back my story, up until I got extremely sick in October 2014, I was completely healthy and what I considered normal. I rarely went to the Doctor for anything, rarely got sick and I was always on the go. I’m a 32 year old female, married with 2 kids. In October 2014 I came down with some sort of virus. I was extremely sick for about a week. Within 2 days of feeling better I started having pins and needles only on my left side in my arm, hand, leg and foot; my left leg also started falling asleep. I just thought all that was weird and went on with my life, not seeing a dr or anything. Starting in January of 2015, my symptoms started getting worse. I was walking through a parking lot when I lost complete feeling of my left leg and fell. It lasted about 30 mins or so before I started getting feeling again. By this time my pins and needles were staying constantly, the numbness was becoming more frequent, and now my left side was extremely weak. After visiting my primary she confirmed the weakness, ran a bunch of lab work and referred me to a neurologist in my area. Fast forward to December 2015, I had 2 mri’s, completed physical therapy and been seen by 2 neurologists, both of which told me they didn’t want to spend the time to help figure anything out. My pins and needles had now migrated to the right side, and my face; I lose complete feeling in my left and right legs, more on the left, as well as in my left hand; My bladder started giving me issues retaining and releasing; I frequently become so extremely tired I can’t get out of bed for days, sleeping the entire time; my balance is so out of whack that there are days I’m walking and I look like I’m drunk because I can’t walk well; started having memory issues, as well as word finding issues. Because of the random dead leg, and balance issues, I fall frequently. So I decided to come to Mayo Clinic.

They have done numerous tests and blood work. I have had a full spinal and brain MRI, EMG (x2), spinal tap, skin biopsy, audiology testing, balance testing, ARS, QSTAT, BAER, VER, SSER, Nystagmography Tests, Tilt table testing, dynamic posturography tests, urology testing, and I’m sure some others I can’t think of right now and all have come back clear except a few small issues, but don’t offer any insight to my issues. I came back positive for small fiber neuropathy, I failed all six stages of my balance testings but because I didn’t need assistance the dr said he won’t consider it failed and nothing was done, they found mild bilateral hearing loss, and my tilt table came back slightly abnormal.

I’ve seen consultative med, hematology, neurology, urology, integrative medicine, and psychiatry. No one can figure out what’s going on but my life has changed so much that I need to figure out what’s going on so I can either treat it or figure out how to deal with it. I have a hard time staying awake, my balance is completely off, I randomly lose feeling in places and fall, I’m weak on my left side and have issues standing for long. I was going to school full time and had a 3.85 GPA until this now it’s dropped to a 2.75. I can’t keep up with anything and I don’t know how I’m going to work when I can’t tell when there will be days I can’t wake up or get up. Or when My balance is so unstable I can’t walk with out help.

I was referred to neuromuscular and saw the Dr this morning. He said I won’t treat anything until we know more, which is fine because I want to know more. But told me to have a great day and didn’t tell me what to do next or where to go from here. He just said send me a message of it gets worse. I don’t have any other appointments or outlook on what to do now. I’m not out seeking, looking for, or even asking for medications. I just want to figure out some sort of normal. I don’t know how I’m supposed to help support my family or work of I can’t even do anything. But not knowing I don’t have many options, can’t get medical help or anything.

I’m so frustrated and feel like everyone’s brushed me off. What I wouldn’t give to just feel normal again or at least have an answer.

hello. i want to reply to you to say: you are not the only person who has been treated like this so p;ease do not doubt yourself. there are still many of us who are still trying to be correctly diagnosed so that we may be treated and helped with our pain and suffering. it is a hard long road even when we are diagnosed. hang in there and try to enjoy as much as you can. there are many of us who do care for you. sincerely.

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Have they run any tests for ALS? It’s hard to diagnose. I’m sorry to hear about your treatment, or really lack of considerate treatment. Were here to give you support as much as we can. Gail B Ledesma

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Doctors who work this way are like the prosecutor in a criminal. Some of them seem to be trying to protect the suspected person from the victim, or the jury. Some will actually try to prove the suspected guilty. And even a few just want to find the truth, or Justice.

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@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. “Send me a message if it gets worse.” This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don’t have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

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@oldkarl

@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. “Send me a message if it gets worse.” This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don’t have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

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Great advice @oldkarl – doctors have a lot of different patients and I’m sure they do their best to figure out the problem. I just think there are way too many health issues for one doctor to be an expert on everything…which is what we as patients expect. That’s why (in my opinion) we need to help them out by asking a lot of questions and pushing them for answers. More importantly like you say is to be your own advocate and do your own research to find out and learn as much as you can about your health issue.

Thanks again for the information you provided. I know it will help others who are following the discussion.

John

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@oldkarl

@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. “Send me a message if it gets worse.” This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don’t have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

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yes, i so very, very much agree with you. but,,,, i have experienced with a number of doctors they do not want to spend the time or just do not want to answer any, any questions period. why? years ago it was not this way. are they afraid of being sued over a question? or is it just in some areas? unacceptable! (by the way, i have never sued a doctor).

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there is one more item i forgot to post. there are doctors who have “an attitude” do not let them hurt your feelings and stop you from continuing with your search for knowledge. from a caring fellow sufferer.

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@oldkarl

@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. “Send me a message if it gets worse.” This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don’t have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

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I think it has a lot to do with the number of patients they have to see…not like the old days. I’m old enough to remember the family doctor making house calls. It’s almost like they are taught courses by efficiency experts like a lot of businesses get caught up in.

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@oldkarl

@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. “Send me a message if it gets worse.” This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don’t have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

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i have had a doctor tell me “you have exactly 2 minutes to tell me what you need. you are only allotted so much of my time.” this is the truth so help me god. so yes, i do believe some doctors take a special efficiency course on how to run their “business” in a more efficient way. or, they are working for a conglomerate that wants their business to operate in this manner. did i really say this? things have changed so drastically. so pray and dance.

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Took what felt like light years but I was diagnosed after suffering with horrible never ending pain, bladder pain and urgency wetting bed and pants, lymphedema, stiffness, pain and weakness in back of neck, crippled knees, inability to hold my torso up, sleep apnea, numb legs, depression from the longevity of living with pain and the trauma that I was exposed to in the workplace. Chronic fatigue and obesity due to pain when exercising. Accute Stress Reaction. A bazillion doctors.

Most of it located in the noggin and central nervous system. Cymbalta for Fibromyalgia might help you.

There is no cure.

I have to go and convince my PCP that I need a wheelchair.

My main question is:

Are people who are ill supposed to have to convince doctors that they need something?

I’m tired.

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also have issues with sensory overload and bright lights

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@sauvee

Took what felt like light years but I was diagnosed after suffering with horrible never ending pain, bladder pain and urgency wetting bed and pants, lymphedema, stiffness, pain and weakness in back of neck, crippled knees, inability to hold my torso up, sleep apnea, numb legs, depression from the longevity of living with pain and the trauma that I was exposed to in the workplace. Chronic fatigue and obesity due to pain when exercising. Accute Stress Reaction. A bazillion doctors.

Most of it located in the noggin and central nervous system. Cymbalta for Fibromyalgia might help you.

There is no cure.

I have to go and convince my PCP that I need a wheelchair.

My main question is:

Are people who are ill supposed to have to convince doctors that they need something?

I’m tired.

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yes, you are right. when both of my feet were in “boots” (psoriatic and rheumatoid arthritis) and would be so for about 6 months i asked for a prescription for a wheelchair (knowing that this will happen again and again, i was refused. for a hand brace, etc. finally found a FRIENDLY doctor and he took care of business. there are to, to many doctors that seem to like hurting with a straight face. and there are still so many, many stories of this same nature. the doctors of today have a different mind set than what used to be.

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@sauvee

Took what felt like light years but I was diagnosed after suffering with horrible never ending pain, bladder pain and urgency wetting bed and pants, lymphedema, stiffness, pain and weakness in back of neck, crippled knees, inability to hold my torso up, sleep apnea, numb legs, depression from the longevity of living with pain and the trauma that I was exposed to in the workplace. Chronic fatigue and obesity due to pain when exercising. Accute Stress Reaction. A bazillion doctors.

Most of it located in the noggin and central nervous system. Cymbalta for Fibromyalgia might help you.

There is no cure.

I have to go and convince my PCP that I need a wheelchair.

My main question is:

Are people who are ill supposed to have to convince doctors that they need something?

I’m tired.

Jump to this post

Doctors keep telling me to lose weight so I said ok and I made dramatic changes to my diet – organic, no sugar, no caffeine, no grains, no dairy…etc. Did lose some weight and glad. Still they recommend bariatric procedure but our insurance does not cover. So I looked for a good surgeon in another country that has reputation for excellent healthcare – would you believe that the surgeon writes to me personally in email??? He just wrote to me the other day for third time asking when I am coming to see him! Amazing.

But there is one thing I don’t get…if Fibro is about brain chemistry and imbalance in central nervous system why is weight so crucial?

There is no cure for Fibro wether you’re overweight or not.

Confused.

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Ten years ago an annual checkup showed some blood in my urine. I discounted it and went about my life. I proceeded in the subsequent months to exhibit a variety of symptoms that became progressively worse: coughing, blood in the sputum, weight loss, swelling in the fingers and wrist (intermittent), and tiredness. My PCP suspected a rheumatological problem and referred me to a specialist. He suspected the same thing and had a shopping list of possibilities including lupus, Greenfields (?), Wegners, others. While waiting for preliminary blood work to return he started me on Methotrexate and referred me to a Pulmonologist for the coughing up blood. The Pulmonologist, was spot on and immediately checked me into a hospital and ordered more blood work. I remember one thing that stuck with me. He said “You don’t have several problems you have one, with multiple symptoms and they have one thing in common, your circulatory system”. While waiting for the blood work to return (over the weekend) the staff was preparing to insert a central line and filter out some blood component (treatment for one autoimmune disease), but the Pulmonologist vetoed that as potentially unnecessary. The blood work showed elevated ANCA level, extremely low red blood count and a soup recipe of other reading all pointing at kidney damage. Wegners Granulomatosis was the diagnosis. A blood transfusion, IV steroids, Cytoxine were administered and a week later I was released. Biopsy showed Granulomatosis in the kidney. Lungs cleared quickly. ANCA levels returned to below detectable limits. I needed Procrit for 6 months until the kidneys got my RBC back to normal. In the subsequent ten years I transitioned to decreasing twice daily doses of both Mycophenylate and Prednisone. My eGFR fluctuates between 46 and 59. It may be seasonally related. I had a super team of physicians including an internist, Pulmonologist, and urologists. Lesson learned: don’t ignore a symptom; look for a good diagnostician; given multiple possibilities wait for the lab results (unless, of course, you’re out of time).

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Hello @tomr and @sauvee, Welcome to Mayo Clinic Connect. Thank you for sharing your stories in this group. Sharing = helping other readers now and in the future.

I think you make a very valid statement, Tom- “don’t ignore a symptom; look for a good diagnostician”. Being an advocate for your own healthcare should be at the top of everyones’ list. One great thing you will learn on May Clinic Connect while reading and participating in conversations is how others approach questions for their physicians and also their method to their personal health care journey. Such great information! Everyday I read posts that help me be a better advocate for myself and my family.

I came across this useful link yesterday. Mayo Clinic has a symptom checker- http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075 for future readers that need some helpful information.

@sauvee, if you’re interested, Mayo Clinic offers a Fibromyalgia specialty clinic. Here is information on the clinic, you will notice at the bottom is a link to the appointment line if you have questions. http://www.mayoclinic.org/diseases-conditions/fibromyalgia/home/ovc-20317786. I really hope you are able to find the care you need!

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