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.

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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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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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.

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@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….

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@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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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.

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@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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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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@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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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

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@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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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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Might I suggest looking for the cause rather than focusing on diagnosing the issue. If you remove the cause the issue goes away. Our bodies are really good at healing if you feed them and treat them right. Doctors are trained to diagnose an illness or disease so they can prescribe the recommended drugs . Why not look for the cause instead and you probably already know what that might be. The problem is can you make that change.

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@johnwburns

Don’t give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can’t pretend that I would catch anything that all of these experts have missed. I’ve heard of strange syndromes following an infection like:
http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm
but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven’t seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave’s disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

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My husband has Wegeners which originally started in his ears, eyes and sinus infection. He repeatedly went to doctors for these conditions. Didn't get diagnosed with Wegeners till his kidneys completely failed. He had a high C-anka. Wegeners was finally found through a biopsy of his kidneys. Very rare autoimmune disease. Don't know the cause but he too worked around chemicals for 22 years in the military.

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@brie87144 Im currently in diagnostics at Mayo, it's exhausting, overwhelming, and frustrating. I hope that I'll get some answers soon. I too have numbness and tingling, favors right side but spread to both. I've had 5 emgs, 3 this year, that stuff is awful. Keep getting almost a problem answers and you start to worry that you're going to have to wait to die before you get taken seriously. I've been condescended by almost every specialty you can think of. My best advice is this, keep pushing, keep asking questions, and don't let them make you feel bad about it. As a doctor they are trained to disconnect to protect themselves and sometimes you have to break through that programming. I have notes on my appointments to make sure im booked an hour because i'm always going to ask questions and push for more. I've now got 6 autoimmune disease confirmations and for years I was told that each one of them was something else. You know your body and you have to be your own personal army. I wish you luck, just know there's another warrior out there fighting her own war just like you.

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I am having the opposite problem it seems. My doctor just wants to give me medicine though he is unsure of the actual diagnosis. I find this also frustrating… I'm not big on these medicines that have really terrible side effects but I also hate the extreme fatigue I get on and off and the joint pain, tingling in my hands and feet plus often numbness, insomnia, brain fog, extreme anxiety and much more I just don't feel like listing everything.

I too am a student and went from high honors to about average I suppose because I just can't do anything when these episodes happen. Luckily, maybe I will come up with my own remedy, I am going to school for integrative health and plan to go on to study Functional Medicine because I just do not agree with these conventional doctors at all. I feel like conventional doctors these days (probably not all but where I live it's definitely true) do not take any time with patients they just rush us right out the door, not listening to what I am saying and just throwing prescriptions at me. I have caught this early, I believe there is time to prevent it from getting worse, but these doctors just want to treat the disease, not me, and it makes me sick. Like who wants to take medicine forever that has terrible side effects and when we're not even sure it will work, or prevent symptoms from progressing from my undiagnosed issue.

Thanks for letting me vent. I too am very frustrated with all this.

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