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.

Texas Freedom | @oregongirl | May 20, 2018
In reply to @alphacat "My 21 year old son is having the same problem. He has 6 bulging lumbar discs..." + (show)
@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

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My gosh..you live in Oregon? The pot clinics have their own doctors. Why haven't you gotten some marijuana for him. My son was diagnosed with brain cancer and told he had 2 Mon to 6 months to live.
There were 5 doctors from 5 different Drs. All but one agreed. He went for surgery. They opened him up and he had nothing wrong with him. A week later he had a grand Mal
Seisure. Sorry spelling. I am so done with doctors. My recent 3 weeks in hospital and you are so right. Tests tests and more tests. And nothing. Take a tylonol..geez. What are they teaching them? Do they make a percentage on tests?

REPLY
redhead63 | @redhead63 | May 21, 2018

OMG, they cut your son’s head open then they told you that there isn’t anything wrong with your son. I hope you have a good lawyer. How is your son today.
So sorry that happened.

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redhead63 | @redhead63 | May 21, 2018

Hi:
I am going through the same thing but your symptoms seems much worse. I also went to the Mayo Clinic and I have to go back for a more few tests. On my-chart one Dr. indicated that I have Functional Gait Disorder, which I disagree with but I need the other tests. So, I know how you feel. Did Mayo give you any sort of diagnosis? Please get a copy of all of your records and see if they missed something, sometimes that happens. You have to be your own advocate.
Take Care

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redhead63 | @redhead63 | May 27, 2018

Hi:
I had a really high ANA and negative on the SSA and SSB for Sjögrens but I also had dry mouth and gritty eyes and my Rheumatologist suggested a lip biopsy. According to the report I have Sjögrens but another university said I do not have Sjögrens, so who do you believe? Well at that time I did have a high ANA dry mouth dry and gritty eyes very dry skin so sometimes you have to decide if your Rheumatologist is right. I believe that I have Sjögrens and the Second University could not Diagnosis me because my ANA was boarded line high and I didn’t have the typical Sjögrens lip biopsy pattern. Are you kidding me. Since when do we all have to have a typical pattern. One pill fits all. How ridiculous.

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Texas Freedom | @oregongirl | May 27, 2018

Redhead...I agree with you. The night of my ambulance ride to the hospital, they could not get me into the University of Texas. So, the nearest hospital was Baptist. During my three weeks in and out of Baptist, was one contridiction after another. The one that truly upset me was that I was diagnosed Stage THREE Kidney disease by my the doctor at the University Hospital. But, Baptist doctor said, my Kidneys look perfect. He thought I must have something wrong. I checked my on line record an sure enough, there it was STAGE THREE KIDNEY disease.

REPLY
Lisa | @techi | May 29, 2018
In reply to @alphacat "My 21 year old son is having the same problem. He has 6 bulging lumbar discs..." + (show)
@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

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@alphacat l worked in the er for 8yrs a nd went to school for occupational therapy so l think l should know something about medicine too. I had a brain injury in 1997 and at time l was working with doctors who cared about their patients. After my brain injury they sent me to a nutty psychiatrist because she wanted to rack up.money and l had erected before but after years of falling, seizures, and as they say psychiatric issues it ended up bringing the medicine l was taking l was allergic too. In 2014 all of a sudden l had high ammonia levels never had a problem with my liver. Now l have 5shunts in my liver and now l have issues with slurred speech, falling and shaking. I am diagnosed with conversion disorder. I had so many test run l.should own radiology associates. I now so tried of doctors, drugs and also insurance companies. So now l have to just rely on God he doesn't charge . Because l would just get so frustrated and l want to enjoy my life. You know doctors get kick backs for test, drugs, referring you to other doctors and even misdiagnosed. I had a diagnoses of abnormal EKG and when l was in the hospital the doctor said all your test was normal. Now it's the all might dollar not the patient. I pray your son gets better he deserves more then that....

REPLY
alphacat | @alphacat | May 30, 2018
In reply to @alphacat "My 21 year old son is having the same problem. He has 6 bulging lumbar discs..." + (show)
@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

Jump to this post

We do use THC and CBD when we can afford it, and it works well. I can't imagine not having legal THC since it became legal. You can get tincture and gummies so you don't have to smoke it, and it is organic, certified, and you know exactly what you are ingesting. So much safer, and if you combine the THC with CBD, you don't get the psychotropic effects, or you can experiment with the ratio to get the relaxing, antianxiety effect without being stoned. If you are having a bad day, you can take a little bit more THC and go to bed. You just have to know that you can't drive that day, even if you feel safe.

REPLY
alphacat | @alphacat | May 30, 2018
In reply to @alphacat "My 21 year old son is having the same problem. He has 6 bulging lumbar discs..." + (show)
@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

Jump to this post

I continue to advocate for him. This weekend I took him to the ER with a high fever and belly pain. The same nurse who was VERY rude to us on his last visit told us we were rude to her and the P.A. on that last visit. I so wanted to educate her. Since he is an adult I am limited in what I can do to advocate for him, and I have tried, believe me. I think we have been labeled trouble makers for wanting him to recieve treatment, so he gets less and less treatment. After 2 years, even if it is due to no one being willing to treat him, his problems are labeled "chronic" instead of acute. I think it was when I pointed this out that we became "rude", and he left without treatment, both of us in tears.He sees a Neurologist in the future. Hopefully they will listen and take him seriously. I am so frustrated and furious.

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Mentor
John, Volunteer Mentor | @johnbishop | May 30, 2018
In reply to @alphacat "My 21 year old son is having the same problem. He has 6 bulging lumbar discs..." + (show)
@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

Jump to this post

Hello @alphacat -- I see that you have recently joined Connect. I would like to welcome you to Connect and thank you for being a strong advocate for your son. I know it can't be easy with all the health issues and not getting much help. I'm hoping his upcoming appointment with a neurologist will find something.

Has your son ever received a diagnosis? I was just wondering if the doctors have ever recommended any kind of treatment plan.

If you need another resource for doing your own research, Google Scholar is an excellent tool for doing your own research and narrow down relevant links for specific searches:
https://scholar.google.com/
John

REPLY
Texas Freedom | @oregongirl | May 30, 2018
In reply to @alphacat "My 21 year old son is having the same problem. He has 6 bulging lumbar discs..." + (show)
@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

Jump to this post

First, Make an appointment to meet with the Director of the Nurses and Hospital. I have seen terrible things and statements go flying by and no one complains. THEN, find another hospital you can take your son to, should you require ER. Definatly get another doctor if your doctor is not listening to your son or you.My son had his entire family with him, when 5 doctors told him he had brain cancer. One went so far as to say, he had 2 months to a year to live. When, I passed out, the doctor realized everyone was upset and he walked out. What a jerk. So, with so many doctor saying what they did to support brain surgery, we went for it. They opened his skull. a scar that will be with him forever. The doctor sent what he found to Pathology. They checked the sample twice. NO CANCER. Such a serious operation to find out the doctor was wrong. One doctor suggested an MRI again before surgery. The surgeon said, we don't need it. When I hear the stories on here where doctors are making decision on our lives and allowing us to suffer pain due to some new laws. The laws should be for those KNOWN to be addicts. It is kind of like Chicago right now. Hundreds being killed by guns owned by criminals. So, Chicago is going to take ALL the guns. Just like the doctor removing ALL the pain killers from us. What good will either of these laws make.

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