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.

@moxie928

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.

Jump to this post

have u read any Anthony williams

REPLY
@moxie928

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.

Jump to this post

Hello @moxie928, welcome to Mayo Clinic Connect and it's OK to vent ☺ I think it may be the first step to become a better advocate for your own health…which is something I really believe each of us has to do. I do tend to cut the doctors a little slack most of the time unless they really don't listen. I know that there is no way that most doctors can possibly have the knowledge to be able to diagnose every disease and disorder but that's when I would expect them to ask for help or give you a referral to a specialist. That's one of the reasons I really like my Mayo Clinic doctors at the local Mayo Family Clinic I go to. They work as a team and can provide a referral when needed. Of course I have some friends that are the opposite and want one doctor cradle to grave for continuity.

Are you able to ask your doctor questions about side effects and alternatives? Before I was diagnosed with idiopathic small fiber PN my doctor prescribed gabapentin for the numbness I was feeling in my feet and legs. I took it for two weeks and then told her it wasn't working so I stopped taking it. She brought in her team lead doctor who was a little more thorough asking questions about my symptoms and when I told him I didn't have any pain just numbness and tingling. He said that explains it – gabapentin is only for pain and will do squat for numbness. That was one of the doctor exchanges that got me doing my own research and questioning and drugs and possible side effects before I took them.

Hope you find some answers.

John

REPLY
@johnbishop

Hello @moxie928, welcome to Mayo Clinic Connect and it's OK to vent ☺ I think it may be the first step to become a better advocate for your own health…which is something I really believe each of us has to do. I do tend to cut the doctors a little slack most of the time unless they really don't listen. I know that there is no way that most doctors can possibly have the knowledge to be able to diagnose every disease and disorder but that's when I would expect them to ask for help or give you a referral to a specialist. That's one of the reasons I really like my Mayo Clinic doctors at the local Mayo Family Clinic I go to. They work as a team and can provide a referral when needed. Of course I have some friends that are the opposite and want one doctor cradle to grave for continuity.

Are you able to ask your doctor questions about side effects and alternatives? Before I was diagnosed with idiopathic small fiber PN my doctor prescribed gabapentin for the numbness I was feeling in my feet and legs. I took it for two weeks and then told her it wasn't working so I stopped taking it. She brought in her team lead doctor who was a little more thorough asking questions about my symptoms and when I told him I didn't have any pain just numbness and tingling. He said that explains it – gabapentin is only for pain and will do squat for numbness. That was one of the doctor exchanges that got me doing my own research and questioning and drugs and possible side effects before I took them.

Hope you find some answers.

John

Jump to this post

Thank you, John. 🙂 I was actually referred to an out of town rheumatologist and I really like the doctor I was seeing but for some reason, I saw a different doctor this time. The first rheumatologist I saw knew how I felt about going on a medicine without really knowing what autoimmune disease I actually may have. and knew that I wanted to just watch carefully and see if we can get a little more information before treating an unknown cause. The new guy didn't give very good direction of what to do, other than he wants me to get my eyes examed so he can put me on Hydroxychloroquine, he said it could cause color blindness. doesn't sound fun. He also said its a really mild drug….. but isn't this the same drug they use to treat Malaria? Sounds scary, and not so mild.

So, I have a question, does anyone know if its true or not, or have any experience of their own about a particular type of diet or what to avoid? My first rheumatologist told me to keep eating the way I eat (Vegan) and then I have read somewhere today about a cookbook for autoimmune diseases and it said that all recipes were free from corn, eggs, dairy, gluten, and soy. Can anyone expand on this idea? Or have personal experiences with trying to eat a diet without these types of foods? I eat mostly vegetable but I'm not gonna lie when I get sick of cooking and preparing all my food alllllll the time I will buy processed foods that often have soy and gluten in them.. I've always wondered about Soy whether it's healthy or not and gluten I don't really know a lot about but I know it is the latest fad at least of things to not eat.

I look forward to hearing back from others.

Thank you.

REPLY
@njcarolnjn

have u read any Anthony williams

Jump to this post

No, I haven't read any Anthony Williams. But I will check him out now. Thanks. 🙂

REPLY
@moxie928

Thank you, John. 🙂 I was actually referred to an out of town rheumatologist and I really like the doctor I was seeing but for some reason, I saw a different doctor this time. The first rheumatologist I saw knew how I felt about going on a medicine without really knowing what autoimmune disease I actually may have. and knew that I wanted to just watch carefully and see if we can get a little more information before treating an unknown cause. The new guy didn't give very good direction of what to do, other than he wants me to get my eyes examed so he can put me on Hydroxychloroquine, he said it could cause color blindness. doesn't sound fun. He also said its a really mild drug….. but isn't this the same drug they use to treat Malaria? Sounds scary, and not so mild.

So, I have a question, does anyone know if its true or not, or have any experience of their own about a particular type of diet or what to avoid? My first rheumatologist told me to keep eating the way I eat (Vegan) and then I have read somewhere today about a cookbook for autoimmune diseases and it said that all recipes were free from corn, eggs, dairy, gluten, and soy. Can anyone expand on this idea? Or have personal experiences with trying to eat a diet without these types of foods? I eat mostly vegetable but I'm not gonna lie when I get sick of cooking and preparing all my food alllllll the time I will buy processed foods that often have soy and gluten in them.. I've always wondered about Soy whether it's healthy or not and gluten I don't really know a lot about but I know it is the latest fad at least of things to not eat.

I look forward to hearing back from others.

Thank you.

Jump to this post

@moxie928 when I was researching treatments and diets that would help with my small fiber peripheral neuropathy I ran across a really good book called the Wahls Protocol by Dr. Terry Wahls. She has MS and used diet and nutrition to eliminate most of her symptoms of MS although it's not a cure. She went from a wheelchair to riding a bicycle – great story. You can read about her here:
https://terrywahls.com/about/about-terry-wahls/ She also has some great TED Talks – one you might like is Minding your mitochondria | Dr. Terry Wahls | TEDxIowaCity.

REPLY
@moxie928

Thank you, John. 🙂 I was actually referred to an out of town rheumatologist and I really like the doctor I was seeing but for some reason, I saw a different doctor this time. The first rheumatologist I saw knew how I felt about going on a medicine without really knowing what autoimmune disease I actually may have. and knew that I wanted to just watch carefully and see if we can get a little more information before treating an unknown cause. The new guy didn't give very good direction of what to do, other than he wants me to get my eyes examed so he can put me on Hydroxychloroquine, he said it could cause color blindness. doesn't sound fun. He also said its a really mild drug….. but isn't this the same drug they use to treat Malaria? Sounds scary, and not so mild.

So, I have a question, does anyone know if its true or not, or have any experience of their own about a particular type of diet or what to avoid? My first rheumatologist told me to keep eating the way I eat (Vegan) and then I have read somewhere today about a cookbook for autoimmune diseases and it said that all recipes were free from corn, eggs, dairy, gluten, and soy. Can anyone expand on this idea? Or have personal experiences with trying to eat a diet without these types of foods? I eat mostly vegetable but I'm not gonna lie when I get sick of cooking and preparing all my food alllllll the time I will buy processed foods that often have soy and gluten in them.. I've always wondered about Soy whether it's healthy or not and gluten I don't really know a lot about but I know it is the latest fad at least of things to not eat.

I look forward to hearing back from others.

Thank you.

Jump to this post

@moxie928 I'm gluten free. I had to diagnose that problem 18 years ago when my doctor wouldn't listen to me and there were not many gluten free foods, and a lot of doctors didn't accept celiac disease as a real problem. The problem is a protein in wheat and other grains does cause an autoimmune problem that attacks the intestines and destroys the finger like villi that are the absorptive surface. When you loose those, you'll have problems and deficiencies caused by malabsorption. You can have this for awhile and not know it, but it also causes a leaky gut because of inflammation. That happened to me, and I became allergic to lots of foods due to my leaky gut, so I'm limited in what I can eat, and socially that's difficult when I have to be so careful. That's not something I can change. The foods you list are common allergens for people. The problem with soy is that it has too much of the the Omega 6 or 9 that causes inflammation (and mimicks female hormones) rather than the omega 3's that reduce inflammation. My environmental allergy doctor says to avoid soy. This type of doctor and functional medicine doctors look at the biochemistry of what happens in the body and they try to balance that for optimal health and prevent problems rather than prescribing drugs to treat symptoms. I look up drug side effects and want to know if they damage hearing or vision. I'm an artist and I rely on my color vision. I always test a new prescription carefully and assess if I'm having a reaction to it. Sometimes a doctor will say to keep taking it when you alert them to a problem, but that is your choice. There might be something else that works that is less dangerous, or a supplement that could prevent the damage. It's is worth asking, and worth getting second opinions and making educated choices. FYI- gluten free foods that use other highly refined carbohydrates instead of wheat will cause the same blood sugar spikes as wheat that promote the risk of diabetes. Eating plain meat and vegetables and avoiding grain products is all you really need. I said that for others who might be reading as you've said you're vegan. A few grains are gluten free like rice or oats, but they have to be grown in dedicated fields because cross contamination occurs when a few stragglers grow and are harvested with the crop. If you can cut back on processed foods and eat like they did in the 1800's you'll probably feel better. They did eat wheat, but our wheat today has been so hybridized and changed that it isn't the same thing anymore.

REPLY
@johnbishop

@moxie928 when I was researching treatments and diets that would help with my small fiber peripheral neuropathy I ran across a really good book called the Wahls Protocol by Dr. Terry Wahls. She has MS and used diet and nutrition to eliminate most of her symptoms of MS although it's not a cure. She went from a wheelchair to riding a bicycle – great story. You can read about her here:
https://terrywahls.com/about/about-terry-wahls/ She also has some great TED Talks – one you might like is Minding your mitochondria | Dr. Terry Wahls | TEDxIowaCity.

Jump to this post

@johnbishop This is a great talk. The right food is medicine, but the wrong food causes disease.

REPLY
Please sign in or register to post a reply.