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.

Are we a small band of disappointed individuals, or this this so pandemic that our society just puts up with non-human interactions from professionals?
I know that medicine is called “practice,” as is law, but is it like tenure – once you get it you no longer have enough standards to care if you are helping or not?

REPLY
@robbinr

Are we a small band of disappointed individuals, or this this so pandemic that our society just puts up with non-human interactions from professionals?
I know that medicine is called “practice,” as is law, but is it like tenure – once you get it you no longer have enough standards to care if you are helping or not?

Jump to this post

yes. another brilliant way to present what i also think on this subject. and i am sure there are others who also agree.

REPLY

Hi Brie, I am so sorry that you are having such a hard time at the moment. I have no medical experience to share with you unfortunately, I wish I could tell you exactly what your problem is and how to get rid of it. For some reason I was drawn to your story and have just joined connect to write to you. First I want to tell you that I shall pray for you. Secondly I wonder if you are a Christian. If so turn to GOD to our Lord and Saviour JESUS CHRIST, tell them the whole story and ask for THEIR Help. Put the whole thing into THEIR HANDS. The docs seem to be failing you GOD THE FATHER, THE SON and the HOLY GHOST will not I promise you. Turn it over. If you are not a Christian become one. It is easy Dear GOD my heavenly Father I accept YOUR BELOVED SON LORD JESUS CHRIST, as my Lord and my Saviour, I have sinned against you and am truly sorry, LORD JESUS CHRIST Thank YOU for the gift that YOU are giving me freely, I accept YOU with the greatest joy as my LORD and MY Saviour, help me to serve YOU for the greater Glory of GOD. then ask GOD for HIS HOLY SPIRIT and to lead you from there. So as I was writing this something came into my mind. A neighbour of mine has had symptoms in common with you for the last eight years. She has suffered horrendously. Well she has finallygot a diagnosis Lymes disease from a tick. She is so very weak though that her family are worried she may not be able to take the antibiotics needed to get rid of it. Please get checked for this also. You never know. Please GOD HE will heal you soon. Know that someone is praying for you. GOD BLESS and keep you safe always in HIS CARE,amen Sara30

REPLY
@sara30

Hi Brie, I am so sorry that you are having such a hard time at the moment. I have no medical experience to share with you unfortunately, I wish I could tell you exactly what your problem is and how to get rid of it. For some reason I was drawn to your story and have just joined connect to write to you. First I want to tell you that I shall pray for you. Secondly I wonder if you are a Christian. If so turn to GOD to our Lord and Saviour JESUS CHRIST, tell them the whole story and ask for THEIR Help. Put the whole thing into THEIR HANDS. The docs seem to be failing you GOD THE FATHER, THE SON and the HOLY GHOST will not I promise you. Turn it over. If you are not a Christian become one. It is easy Dear GOD my heavenly Father I accept YOUR BELOVED SON LORD JESUS CHRIST, as my Lord and my Saviour, I have sinned against you and am truly sorry, LORD JESUS CHRIST Thank YOU for the gift that YOU are giving me freely, I accept YOU with the greatest joy as my LORD and MY Saviour, help me to serve YOU for the greater Glory of GOD. then ask GOD for HIS HOLY SPIRIT and to lead you from there. So as I was writing this something came into my mind. A neighbour of mine has had symptoms in common with you for the last eight years. She has suffered horrendously. Well she has finallygot a diagnosis Lymes disease from a tick. She is so very weak though that her family are worried she may not be able to take the antibiotics needed to get rid of it. Please get checked for this also. You never know. Please GOD HE will heal you soon. Know that someone is praying for you. GOD BLESS and keep you safe always in HIS CARE,amen Sara30

Jump to this post

Sara,
While you may have the best intentions.., for you to assume that those of us who suffer physically are not asking our heavenly Father for strength to endure what we go through is very insulting.
Not everyone believes in the Pentecostal way of asking for healing either!
This connection is here for us to give support and medical advice that is pertinent to each condition.
We share in that way, not spiritually. Your zealous drive to preach won’t be received here the way it may on a different venue.
Since you don’t have any chronic disease it’s not easy for you to understand, unless you are a caregiver, so please refrain from your spiritual opinions here. I believe I speak for most of the majority. This isn’t a venue to get into spiritual debate. Not the time or place.
Respectfuly..Darlia

REPLY
@sara30

Hi Brie, I am so sorry that you are having such a hard time at the moment. I have no medical experience to share with you unfortunately, I wish I could tell you exactly what your problem is and how to get rid of it. For some reason I was drawn to your story and have just joined connect to write to you. First I want to tell you that I shall pray for you. Secondly I wonder if you are a Christian. If so turn to GOD to our Lord and Saviour JESUS CHRIST, tell them the whole story and ask for THEIR Help. Put the whole thing into THEIR HANDS. The docs seem to be failing you GOD THE FATHER, THE SON and the HOLY GHOST will not I promise you. Turn it over. If you are not a Christian become one. It is easy Dear GOD my heavenly Father I accept YOUR BELOVED SON LORD JESUS CHRIST, as my Lord and my Saviour, I have sinned against you and am truly sorry, LORD JESUS CHRIST Thank YOU for the gift that YOU are giving me freely, I accept YOU with the greatest joy as my LORD and MY Saviour, help me to serve YOU for the greater Glory of GOD. then ask GOD for HIS HOLY SPIRIT and to lead you from there. So as I was writing this something came into my mind. A neighbour of mine has had symptoms in common with you for the last eight years. She has suffered horrendously. Well she has finallygot a diagnosis Lymes disease from a tick. She is so very weak though that her family are worried she may not be able to take the antibiotics needed to get rid of it. Please get checked for this also. You never know. Please GOD HE will heal you soon. Know that someone is praying for you. GOD BLESS and keep you safe always in HIS CARE,amen Sara30

Jump to this post

You should note, Brie posted that point more than a YEAR AGO! Look at the date.

REPLY

Sara, There “IS” a forum on spirituality on this site.

REPLY
@sara30

Hi Brie, I am so sorry that you are having such a hard time at the moment. I have no medical experience to share with you unfortunately, I wish I could tell you exactly what your problem is and how to get rid of it. For some reason I was drawn to your story and have just joined connect to write to you. First I want to tell you that I shall pray for you. Secondly I wonder if you are a Christian. If so turn to GOD to our Lord and Saviour JESUS CHRIST, tell them the whole story and ask for THEIR Help. Put the whole thing into THEIR HANDS. The docs seem to be failing you GOD THE FATHER, THE SON and the HOLY GHOST will not I promise you. Turn it over. If you are not a Christian become one. It is easy Dear GOD my heavenly Father I accept YOUR BELOVED SON LORD JESUS CHRIST, as my Lord and my Saviour, I have sinned against you and am truly sorry, LORD JESUS CHRIST Thank YOU for the gift that YOU are giving me freely, I accept YOU with the greatest joy as my LORD and MY Saviour, help me to serve YOU for the greater Glory of GOD. then ask GOD for HIS HOLY SPIRIT and to lead you from there. So as I was writing this something came into my mind. A neighbour of mine has had symptoms in common with you for the last eight years. She has suffered horrendously. Well she has finallygot a diagnosis Lymes disease from a tick. She is so very weak though that her family are worried she may not be able to take the antibiotics needed to get rid of it. Please get checked for this also. You never know. Please GOD HE will heal you soon. Know that someone is praying for you. GOD BLESS and keep you safe always in HIS CARE,amen Sara30

Jump to this post

If you have no medical experience to share why are you contributing to an autoimmune site? This site is for persons with autoimmune concerns to contribute to each other…antidotal retellings are not particularly helpful. This is the sort of post that makes me want to stop monitoring the site. Most of us with autoimmune disorders have exhausted our prays to all the various gods. And waved the chicken bones…

REPLY

Hi darlia robbinr and Parus. Just a few points. I am aware of what date Brie posted her request. Robbinr you do not belong to a mutually exclusive club, many of us are suffering also, why do you think I came onto the site in the first place. Brie”s request for help struck a chord with me and seeing I could not give her anything in the way of medical advice I thought to give her what I had, spiritual advice. I did not presume that she did not pray to our Heavenly FATHER but in case she had not I wanted to encourage her to do so. She herself has not answered to my answer so I do not understand why you are all getting on your high horses, and trying to discourage me from giving what I can to someone in need. I shall of course pay no attention to your attempts at shutting me up. But I shall pray for you also. Dear GOD our heavenly FATHER the I AM THAT I AM, please heal darlia, robbinr, Parus Brie and I, I ask this and I thank YOU in the Name of and through YOUR BELOVED SON our Lord and Saviour JESUS CHRIST, Amen. Thank you Parus for telling me that there is a forum on spirituality on the site. I was not aware of that. Sara

REPLY
@sara30

Hi darlia robbinr and Parus. Just a few points. I am aware of what date Brie posted her request. Robbinr you do not belong to a mutually exclusive club, many of us are suffering also, why do you think I came onto the site in the first place. Brie”s request for help struck a chord with me and seeing I could not give her anything in the way of medical advice I thought to give her what I had, spiritual advice. I did not presume that she did not pray to our Heavenly FATHER but in case she had not I wanted to encourage her to do so. She herself has not answered to my answer so I do not understand why you are all getting on your high horses, and trying to discourage me from giving what I can to someone in need. I shall of course pay no attention to your attempts at shutting me up. But I shall pray for you also. Dear GOD our heavenly FATHER the I AM THAT I AM, please heal darlia, robbinr, Parus Brie and I, I ask this and I thank YOU in the Name of and through YOUR BELOVED SON our Lord and Saviour JESUS CHRIST, Amen. Thank you Parus for telling me that there is a forum on spirituality on the site. I was not aware of that. Sara

Jump to this post

THIS IS A CASE WHERE THE DOCTORS WOULD BE CORRECT! please leave her alone and continue your beliefs to yourself. believe it or not, you are being very hurtful.

REPLY
@sara30

Hi Brie, I am so sorry that you are having such a hard time at the moment. I have no medical experience to share with you unfortunately, I wish I could tell you exactly what your problem is and how to get rid of it. For some reason I was drawn to your story and have just joined connect to write to you. First I want to tell you that I shall pray for you. Secondly I wonder if you are a Christian. If so turn to GOD to our Lord and Saviour JESUS CHRIST, tell them the whole story and ask for THEIR Help. Put the whole thing into THEIR HANDS. The docs seem to be failing you GOD THE FATHER, THE SON and the HOLY GHOST will not I promise you. Turn it over. If you are not a Christian become one. It is easy Dear GOD my heavenly Father I accept YOUR BELOVED SON LORD JESUS CHRIST, as my Lord and my Saviour, I have sinned against you and am truly sorry, LORD JESUS CHRIST Thank YOU for the gift that YOU are giving me freely, I accept YOU with the greatest joy as my LORD and MY Saviour, help me to serve YOU for the greater Glory of GOD. then ask GOD for HIS HOLY SPIRIT and to lead you from there. So as I was writing this something came into my mind. A neighbour of mine has had symptoms in common with you for the last eight years. She has suffered horrendously. Well she has finallygot a diagnosis Lymes disease from a tick. She is so very weak though that her family are worried she may not be able to take the antibiotics needed to get rid of it. Please get checked for this also. You never know. Please GOD HE will heal you soon. Know that someone is praying for you. GOD BLESS and keep you safe always in HIS CARE,amen Sara30

Jump to this post

Everyone just get over it and ignore what you don’t feel is pertinent unless you have information based on your case of what worked and what didn’t. Everyone will take what they want from feedback. These illnesses are far greater to each individual than sounding off on everything that really isn’t worth it. If you feel the need to respond, do it respectfully, not like the democrats or republicans.

REPLY

I agree they don’t have a great deal of experience with auto-immune and rare disorders. Many diseases have the same symptoms and it is difficult. It is important to be your own advocate and start researching your symptom’s and ask the doctors questions and document everything so you can see what helped and what didn’t. Often times other things get lumped into “auto immune” when they don’t even relate. I had gall bladder infection where chills, fever, and stomach issues were passed off as this rare disease when in fact it was an infected gall bladder. Once that was removed and the “Candida” was elimated I started feeling much better and was then left with the remaining AI symptoms. I also broke out in hives around hip and buttock area with a few spots on back and even fewer on the stomach. This was passed off as part of the systemic skin issues with autoimmune I found out 3 months later it was related to “Bactrim”. I had stopped Bactrim when I was admitted to hospital and when I started it back up within 2 hours the blisters and red marks appeared. This was antibiotic I was told to take 3 times a week by infectious disease and lung specialists as they said it would fight off pneumonia as my immune system was weak and they were worried about this. I showed everyone (lung and infectious disease, primary and rheumatologist and dermatologist) the hive spots and NOBODY said anything about potential reaction to anything I was taking. They all knew med history and saw me frequently for skin, lungs, other items BUT they all lumped this into the auto immune category.

REPLY

I keep reading about how we need to do our own research. I agree. Problem is one goes to a doctor and mention reading something online most of them will go ballistic.
Bactrim (had never taken it) worked a number on me even though allergic reactions are rare. I was also given another new med and the dosage was prescribed incorrectly resulting in renal failure. I thought it was my heart. Went to ER and was drenched in sweat from pain from all of the fluid trapped in me…I was urinating so did not think about failing kidneys…Heart specialist did have my heart checked out just to be on the safe side. Told me after all tests were completed that I had been in renal failure. I asked for the hospital social worker and she found a new PCP for me-the doctor making the error was w/ another medical group-she was fortunate on that one.

REPLY
Please sign in or register to post a reply.