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Autoimmune diagnosing problem
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.
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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.
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2 ReactionsI 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.
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2 Reactionskeep reading to research. many of us have experienced what you have. that and many other doctors can be extremely rude and your health can be compromised such as what did happen to you. do not doubt yourself. of course we cannot be correct all the time but keep on trekking.
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4 ReactionsOK this is my last words on this matter. Brie has not answered. My response was to her. If you are hurt by my response to her then you have a problem not me. I absolutely will not be told by you or anyone else to shut up and keep my beliefs to myself. I have a GOD given right to speak as I see fit and shall continue to do so. I am amazed that you are so extremely rude and hostile toward someone who only wanted to help with the one thing that I have to give, trust in the LORD. However if anyone else wants a prayer please feel free to respond in whatever way you wish I shall note your names and I shall pray for you all with love, Sara
@darlia, hi, i just finished reading some of the thread here pertaining to Brie, Sara30, Steeldove, Parus, Robbinr, gailb, chefbrown, kgoodwin9, peach414144. Ive been on this website for about a year or two, and i thought it was a place where you could mention almost anything if it was done with the intention of offering information, suggestions, advice maybe, or asking for help, or offering help. Brie's case certainly sounds woeful, and she definitely needs help. But she also sounds like a strong woman with a level head on her shoulders. But she doesn't sound like someone that needs defending. I have read perhaps a hundred posts on this website and i have never read/heard such unkindness or vitriol toward another person. Sara30 said that Brie's post called to her, but all she had to offer was prayer, and it sounded to me like "compassion". We, on this website need all the help we can get. There is no need to call someone out for trying to offer help in the only way they know of. I would like to offer up a previous post in this same thread. "Posted by @robbinr, Wed, Aug 2 3:59pm
There are lots of options for people to be driven around these days. UBER, Lift, buses..We are not dead yet! And when we are, we will probably get a huge laugh out of why we had to go through the pain we have in this life. Maybe it is to learn compassion for those who are in pain."
Liked by gailb, ChefBrown, Kanaaz Pereira, Connect Moderator, John, Volunteer Mentor
What happened to your compassion for Sara30? In my opinion, your moderator, John?, should have shut you all down immediately, except for Sara30. Your behavior towards her was abominable.
"Learn COMPASSION for those who are in pain"
Danybegood1
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1 Reaction@sara30, i too suffer from multiple conditions. You must also iam so sorry for your pain. I would love to receive prayer if you are still offering. I am in the process of converting from Catholicism back to my Protestant roots. One of the things i remember hearing there is that "the more your pain, the closer you are to God". Needless to say i have a lot of questions.
All my best, Dany
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2 ReactionsThanks for posting this @danybegood1. I was bothered by all of this which led me to start a new discussion to address this in case I see it happen again in a discussion I'm following. We all need to be aware of the other person when we post words...words can help and words can hurt. We really want Connect to be a safe patient to patient place where you can do specifically what you described - mention almost anything if it was done with the intention of offering information, suggestions, advice maybe, or asking for help, or offering help.
So here is my advice as a reminder for all Connect members:
https://connect.mayoclinic.org/discussion/you-are-not-helping/bookmark/?ajax_hook=action&_wpnonce=8e0a51603d
John - a patient with PMR, SFPN, degenerative disc disease, high blood pressure and to top it all off - older than dirt ☺
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1 ReactionThank you so much for all the support and information you are offering.
Although Connect members may choose to mention their faith, conversations on Connect should concentrate on sharing medical experiences to help inform and support members in their pursuit of understanding their situation, getting good medical care, and making informed health decisions.
In view of that, Mayo Clinic Connect has established a few community guidelines that help keep the Connect community safe, supportive, inclusive, and respectful (https://connect.mayoclinic.org/community-guidelines/):
– Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
– Realize that sarcasm and joking will often be misunderstood.
– Personal attacks against members or health care providers are not acceptable. Such posts will be removed.
Inappropriate mentions of faith will be edited or removed. Mentions of faith are considered inappropriate if the message:
– is evangelizing
– declares faith or God to cure all
– is gratuitous: the reply proclaims a statement about faith without addressing anyone or the context of the conversation
is without connection, i.e., a member's first post.
Thank you in advance for your understanding, and for choosing to be an active, participating member of the Connect community.
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1 Reaction@kanaazperereira, Hi, did @Sara30 even get to read my post? Did anyone else? What those people said to @sara30
was wrong. Dont you think she was hurt by them? She came to this website for the same reason as everyone else and they vilified her. I saw the website mentioned i think for rules of speach. Did everyone get that link? This situation stinks. I even asked Sara for prayer. Im not against it.
Dany
Hi @danybegood1,
You posts have been seen. Thank you for sharing your views. Also thank you for pointing out that there are discussion groups talking about faith on Connect.
@sara30, Here is the active conversation on spirituality to which Parus refers that I hope you will join.
- How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
In general, conversations on Connect focus on sharing medical experiences to help inform and support members in their pursuit of understanding their medical situation, getting good medical care, and making informed health decisions. We realize that for some, perhaps many, faith is an integral part of health. However, it is best to make a connection with another member before assuming they share your faith. Get to know them first. Another good guideline is to stick to the topic. In this case, the topic is about diagnosing autoimmunue disease.
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