1. < Autoimmune Diseases

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.

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

oldkarl | @oldkarl | May 19, 2017
In reply to @oldkarl "Brie87144, I hope you are still on line, and curious. I have been thinking about your..." + (show)
@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Jump to this post

Hi, Amy. Good to hear from you, and that you are in contact with Mayo. My oldest sister has been living in an independent living arrangement in Sacramento CA, and is just now moving to assisted living, same facility. She saved a lot of money living independent as long as she could. Actually the only difference is someone fixing her meals and someone doing her meds and laundry. That independent living was still expensive, but cheaper. Not really a kitchen, just a small refrigerator and a micro and sink. You might find one of those in the area around LaCrosse, in a smaller town. Check with Senior Services or medicare. Also, call the local Hospice for suggestions. As for the wildcaught, I cannot imagine what that would have to do with mis-folded and broken protein chains, but that is your choice. Have a good one.

REPLY
Amy | @larsona10 | May 19, 2017
In reply to @oldkarl "Brie87144, I hope you are still on line, and curious. I have been thinking about your..." + (show)
@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Jump to this post

Sorry, I thought you were speaking about amyloidosis in which these proteins accumulate in organs such as heart, kidneys, the nervous system or intestinal tract. I'll take a look into senior services, as I had entertained the idea previously but not fully until you brought it up. I'll be 65 in October and if I have to wait until then, that's not an issue. Anyway, I so appreciate your guidance as I will seek the tests you have mentioned and we will definitely look into those issues. Thank you,
Amy

REPLY
oldkarl | @oldkarl | May 19, 2017
In reply to @oldkarl "Brie87144, I hope you are still on line, and curious. I have been thinking about your..." + (show)
@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Jump to this post

Amy, I am speaking about many things. At one time I operated the Senior Services in our county. We were involved in anything that could help seniors, from age 50 on up, (or down,) if someone was hurting and we could do something about it. For most states, that is the only real limit.
karl

Anyone can love one or two persons. Most can love several. Some can love hundreds. The world needs more who can love five or six billion at a time.

old karl

From Yachats, Oregon, USA as a gift for Jesus, his people, and for general community economic development. We believe that every person has a right to life, liberty and the pursuit of eternity.
http://bit.ly/1RWdsSE Jesus is very clear that being poor is not the way God wants the world to work.
At this URL folks of any faith, ethnicity, race, nationality, wealth, gender or whatever will be able to download leadership programs for the sessions of a community workshop for literacy, for the study of Jesus, and for community economic development. The workshop is for church or other faith group, schools, economic groups, community, government organization, family, whatever.
http://bit.ly/1RWdsSE
Just download material from Dropbox. Remember:
It&apos;s free. Also, you can help a lot of people. Just
forward this note to them. Think especially low
income people, perhaps immigrants seeking peace.
Native people or Third World, victims
of abuse populations, migrants, etc.
http://bit.ly/1RWdsSE

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oldkarl | @oldkarl | May 19, 2017

Check with Senior Services about housing. We referred many while I ran the program here. Independent, assisted, hospice, Foster.

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Amy | @larsona10 | May 19, 2017

Thanks so much, I'll check these out. So nice to know about the options and so especially pleased with your personal efforts to help the senior community. I myself was a caregiver for quite awhile and one of the loveliest couples was a pastor of a church and his wife -- both needed assistance. After this temporary work, I went back into Corporate America as a top executive making almost $100K. The dichotomy is amusing but everyone should make a contribution in life like this. It certainly sounds like you have!! Thanks so much for helping me, Karl and the senior community. They deserve our utmost respect. Amy

REPLY
oldkarl | @oldkarl | May 19, 2017
In reply to @oldkarl "Brie87144, I hope you are still on line, and curious. I have been thinking about your..." + (show)
@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Jump to this post

Amy, just to be sure you understand clearly, I have been studying amyloidosis for about 18 months now. At about Christmas time of 2015 I was given a tentative dX of primary systemic hereditary light chain amyloidosis. I bought a very expensive book, "Amyloidosis -- Diagnosis and Treatment", edited by Morie Gertz M.D., Director of Internal Medicine at Mayo MI. It is written by a group of experts from Mayo and other great medical institutions. Since then I have also read many other papers and books. One of the best is "Heart Like Cement", by John Helwig. It is his story of diagnosis and treatment. Donella, my wife, says that if the book had my name on it, it would still be true as my life story. It is free, usually from http://www.amyloidosis.org. Anyway, yes, I am talking about the disease, housing, senior services, faith, almost anything I know something about.

REPLY
Amy | @larsona10 | May 19, 2017
In reply to @oldkarl "Brie87144, I hope you are still on line, and curious. I have been thinking about your..." + (show)
@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Jump to this post

Good for you, John. So glad you found true experts at Mayo, and have been learning about your disease. I'll definitely look into this, the test you recommended (I see my functional doctor on June 5th) and we'll pursue this as a possible event of concern. God bless!
Amy

REPLY
bobsconnect | @bobsconnect | Jul 3, 2017

I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow's Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn't literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I'm seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.

REPLY
1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 4, 2017

Welcome back, @bobsconnect! We're thrilled that you've returned, and glad to know that you are faring better. True to the saying, "Behind every successful man there stands a woman," it is indeed wonderful to have that encouragement and support...sincere kudos to your wife.

@bobsconnect, did you notice any significant side effects from the Cellcept? A few Connect members have posted about immunosuppressant 'challenges' and I'm sure they would appreciate your insight.
Are you still averse to "tonic water (yuk), & pickles (yum)" – (one of your past posts) 🙂

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 2017
In reply to @bobsconnect "I know well your frustration. I have the same issues and after over 40 doctors with..." + (show)
@bobsconnect

I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow's Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn't literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I'm seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.

Jump to this post

Hi @bobsconnect, I too would like to welcome you back and I'm glad you are doing better. I especially agree with @kanaazpereira about behind every successful man there stands a woman... Like you my wife is my angel and helps me through my daily aches and pains. I do try to be extra nice to her because I heard her twin sister tell her husband what happens to crabby old men - they don't get to stay at home, they go directly to the nursing home.

Keep up the good work! and keep coming back and sharing. It really helps others with the same health issues to know that they are not alone. Thank you again!

John

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