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.

Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Dec 4, 2018
In reply to @johnbishop "@moxie928 when I was researching treatments and diets that would help with my small fiber peripheral..." + (show)
@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.

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

REPLY
pfbacon | @pfbacon | Jan 25, 2022

Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been to all the doctors, I don't want to take opiates, I can't do pot (allergic), except, my pain doctor gives me 100 XL Tramadol a day (it's mild, doesn't make me sleepy). I do exercises I learned in physical therapy (when I don't do them, I get so stiff I can't move but I have to start moving through the pain to loosen up). I take Gaba and Lyrica for Axonal Sensory Neuropathy, Iron for RLS, Tylenol, asthma meds, I do stretches ...

Do you have arthritis? If so, what are you doing/taking that blocks the constant pain?

I thought that hubby and I would travel and play golf when we were retired ... so far, I've been dealing with pain the entire time and he has too (same thing: arthritis). Our Orthopedist is in his 60's, he said he has arthritis too and there is nothing to fix it, it will get worse, we may as well accept it. There might be something new that Mayo Clinic knows of but he doesn't. I took Dolobid then changed to Etodolac for some post-surgery pain years ago, it worked and had no side effects. Are any of you taking those? Do they help with arthritis?

I have to make one last try to find something. I know the arthritis in my back can't be cured but something to block the pain without making me sleepy would enable me to do a few things before I kick the bucket.

Peggy

REPLY
3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 25, 2022
In reply to @pfbacon "Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been..." + (show)
@pfbacon

Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been to all the doctors, I don't want to take opiates, I can't do pot (allergic), except, my pain doctor gives me 100 XL Tramadol a day (it's mild, doesn't make me sleepy). I do exercises I learned in physical therapy (when I don't do them, I get so stiff I can't move but I have to start moving through the pain to loosen up). I take Gaba and Lyrica for Axonal Sensory Neuropathy, Iron for RLS, Tylenol, asthma meds, I do stretches ...

Do you have arthritis? If so, what are you doing/taking that blocks the constant pain?

I thought that hubby and I would travel and play golf when we were retired ... so far, I've been dealing with pain the entire time and he has too (same thing: arthritis). Our Orthopedist is in his 60's, he said he has arthritis too and there is nothing to fix it, it will get worse, we may as well accept it. There might be something new that Mayo Clinic knows of but he doesn't. I took Dolobid then changed to Etodolac for some post-surgery pain years ago, it worked and had no side effects. Are any of you taking those? Do they help with arthritis?

I have to make one last try to find something. I know the arthritis in my back can't be cured but something to block the pain without making me sleepy would enable me to do a few things before I kick the bucket.

Peggy

Jump to this post

Good morning @pfbacon Peggy. Osteoarthritis has got to be the worst! I know, I have it, too. In the comment below, several members are talking about acupuncture as an excellent source of pain relief for arthritis.
https://connect.mayoclinic.org/comment/103658/
You can also check in the ‘Bones, Muscles and Joints’ group for more discussions and a place to ask questions.
Does the arthritis get in the way of most activities of daily living?

REPLY
1 reply
nleejewell | @nleejewell | Jan 26, 2022
In reply to @pfbacon "Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been..." + (show)
@pfbacon

Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been to all the doctors, I don't want to take opiates, I can't do pot (allergic), except, my pain doctor gives me 100 XL Tramadol a day (it's mild, doesn't make me sleepy). I do exercises I learned in physical therapy (when I don't do them, I get so stiff I can't move but I have to start moving through the pain to loosen up). I take Gaba and Lyrica for Axonal Sensory Neuropathy, Iron for RLS, Tylenol, asthma meds, I do stretches ...

Do you have arthritis? If so, what are you doing/taking that blocks the constant pain?

I thought that hubby and I would travel and play golf when we were retired ... so far, I've been dealing with pain the entire time and he has too (same thing: arthritis). Our Orthopedist is in his 60's, he said he has arthritis too and there is nothing to fix it, it will get worse, we may as well accept it. There might be something new that Mayo Clinic knows of but he doesn't. I took Dolobid then changed to Etodolac for some post-surgery pain years ago, it worked and had no side effects. Are any of you taking those? Do they help with arthritis?

I have to make one last try to find something. I know the arthritis in my back can't be cured but something to block the pain without making me sleepy would enable me to do a few things before I kick the bucket.

Peggy

Jump to this post

I’m really sorry you’re suffering like this. I have osteoarthritis and rheumatoid arthritis, a knee and a hi replacement. The hip made everything even worse due to another problem in my spine. I take 300 mg of pregablin daily, 3 Percocet (10/325), 2 morphine 10 mg each. I can walk about half a block, sit for about 15 minutes. I have a very large cyst at the end of my spine that’s inoperable, and the nerve damage from surgery and the remodeling of my spine puts almost constant pressure on my sciatic nerve. Other than the meds, swimming, deep water aerobics did help with flexibility. Walking when I was able helped. Heat helps. You might investigate having joints replaced if that’s possible. Good luck and again, I’m sorry.

REPLY
1 reply
pfbacon | @pfbacon | Jan 26, 2022
In reply to @becsbuddy "Good morning @pfbacon Peggy. Osteoarthritis has got to be the worst! I know, I have it,..." + (show)
@becsbuddy

Good morning @pfbacon Peggy. Osteoarthritis has got to be the worst! I know, I have it, too. In the comment below, several members are talking about acupuncture as an excellent source of pain relief for arthritis.
https://connect.mayoclinic.org/comment/103658/
You can also check in the ‘Bones, Muscles and Joints’ group for more discussions and a place to ask questions.
Does the arthritis get in the way of most activities of daily living?

Jump to this post

I'm "pushing through the pain" but I can't keep on. I made an appointment with my orthopedist ... I'm sure he will do something, maybe aspirin instead of tylenol, maybe physical therapy. Thank you for caring ! Peggy

REPLY
pfbacon | @pfbacon | Jan 26, 2022
In reply to @nleejewell "I’m really sorry you’re suffering like this. I have osteoarthritis and rheumatoid arthritis, a knee and..." + (show)
@nleejewell

I’m really sorry you’re suffering like this. I have osteoarthritis and rheumatoid arthritis, a knee and a hi replacement. The hip made everything even worse due to another problem in my spine. I take 300 mg of pregablin daily, 3 Percocet (10/325), 2 morphine 10 mg each. I can walk about half a block, sit for about 15 minutes. I have a very large cyst at the end of my spine that’s inoperable, and the nerve damage from surgery and the remodeling of my spine puts almost constant pressure on my sciatic nerve. Other than the meds, swimming, deep water aerobics did help with flexibility. Walking when I was able helped. Heat helps. You might investigate having joints replaced if that’s possible. Good luck and again, I’m sorry.

Jump to this post

Omigosh - you have a lot to deal with. I hope some relief is found for you ... Peggy

REPLY
1 reply
marye2 | @marye2 | Jan 26, 2022
In reply to @pfbacon "Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been..." + (show)
@pfbacon

Arthritis ... is causing pain in my back that's reaching the 'intolerable' stage. I have been to all the doctors, I don't want to take opiates, I can't do pot (allergic), except, my pain doctor gives me 100 XL Tramadol a day (it's mild, doesn't make me sleepy). I do exercises I learned in physical therapy (when I don't do them, I get so stiff I can't move but I have to start moving through the pain to loosen up). I take Gaba and Lyrica for Axonal Sensory Neuropathy, Iron for RLS, Tylenol, asthma meds, I do stretches ...

Do you have arthritis? If so, what are you doing/taking that blocks the constant pain?

I thought that hubby and I would travel and play golf when we were retired ... so far, I've been dealing with pain the entire time and he has too (same thing: arthritis). Our Orthopedist is in his 60's, he said he has arthritis too and there is nothing to fix it, it will get worse, we may as well accept it. There might be something new that Mayo Clinic knows of but he doesn't. I took Dolobid then changed to Etodolac for some post-surgery pain years ago, it worked and had no side effects. Are any of you taking those? Do they help with arthritis?

I have to make one last try to find something. I know the arthritis in my back can't be cured but something to block the pain without making me sleepy would enable me to do a few things before I kick the bucket.

Peggy

Jump to this post

You might also ponder how tense your body is in pain; mine makes me tightened the muscles and tendons. I am on buffered Etodolac, which helps some. I also use THC/CBD tinctures at night for more relaxed sleep.

REPLY
marye2 | @marye2 | Jan 26, 2022

Look at Terry Wahl's writings and cookbooks. She has MS and has become functional again. Lots of writings on food as a means to keep up mitochondria and add strength. There's just not great tests to run for some of these strange symptoms. Acupuncture, Reiki and other alternatives might sound woo woo but might offer some help.

REPLY
nleejewell | @nleejewell | Jan 26, 2022
In reply to @pfbacon "Omigosh - you have a lot to deal with. I hope some relief is found for..." + (show)
@pfbacon

Omigosh - you have a lot to deal with. I hope some relief is found for you ... Peggy

Jump to this post

Thank you.

REPLY
pfbacon | @pfbacon | Jan 27, 2022

Thank you all for your good advice! Peggy

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