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.

@wesbig

I feel your pain, I wish that there was something I could say or do to make you feel better, but I can’t. I currently am going to six different doctors. Last week I was taking ten pills a day. Bye the end of the week I never felt worse. I have been to two rheumatologist and there still not sure what is wrong. I have several good doctors at this time. One thing I found out is if they don’t take the time to listen to you, let them go and look for someone else. Always keep copies of your lab work to show your next doc. Also have you seen an endocrinologist for your low cortisol. I have been through that. It took about six months to get my levels back to normal. Not sure I said anything that you didn’t already know. Hope you start feeling better.

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Thank you for your support. My endocrinologist is passive, saying let me know if your rheum wants to do the taper.

I think we need to see the outcome of the neurologist’s evaluation. I have more comfort with him. i told him about my B6 deficit as well and he warned neurological symptoms can get worse with too much B6.

The volume of pills is daunting. And who knows if side effects are adding to our challenges. For me, the passiveness to keep everything status quo is hard when you dont feel well. Sometimes I feel like we just have to tolerate our as is state because the docs feel it is the best that they can do.

For me, addressing falling is an issue. We are addressing with a walker, but why do I fall. Last night I stood up and next thing I know I am trying to land back in the chair…no dizziness.

I guess we just need to keep asking questions. Next week I will be evaluated by a physical therapist. Between him and the neurologist, maybe we can find an answer.

Thanks much.

REPLY

No problem. Trying to untangle this but I can only take it so far.

So was POTS/dysautonomia ever given as a formal diagnosis and a treatment plan formulated? You emphasize your history with prednisone but mineralocorticoids are more of a foundation for POTS, true? The POTS diagnosis would be in the neurologist’s wheelhouse.

How did the neurologist conclude that you have low cortisol in the context of an office visit? Something obvious like hyperpigmentation of sun exposed areas? Very low resting blood pressure? Major endocrinological illnesses like adrenal insufficiency will knock homeostasis off systemically. An endocrinologist is the one to sort that out, not a neurologist or rheumatologist.
http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps
http://emedicine.medscape.com/article/116467-clinical
What mage you aware of B6 deficiency and how did you confirm it?

I can’t help going back to the fact that the med management is all over the place. You are take anti-hypertensives to drive your BP down, and prednisone which will drive it up.

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@johnwburns

No problem. Trying to untangle this but I can only take it so far.

So was POTS/dysautonomia ever given as a formal diagnosis and a treatment plan formulated? You emphasize your history with prednisone but mineralocorticoids are more of a foundation for POTS, true? The POTS diagnosis would be in the neurologist’s wheelhouse.

How did the neurologist conclude that you have low cortisol in the context of an office visit? Something obvious like hyperpigmentation of sun exposed areas? Very low resting blood pressure? Major endocrinological illnesses like adrenal insufficiency will knock homeostasis off systemically. An endocrinologist is the one to sort that out, not a neurologist or rheumatologist.
http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps
http://emedicine.medscape.com/article/116467-clinical
What mage you aware of B6 deficiency and how did you confirm it?

I can’t help going back to the fact that the med management is all over the place. You are take anti-hypertensives to drive your BP down, and prednisone which will drive it up.

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So stepping through
•B6 deficiciency was found by colleague in practice with my Primary care. I
was having nerve pain every where-pins and needles, burning, bad leg pain,
back pain, plus my falls. That is when I was prescribed the walker,
lidocaine pain patches, and she ran blood work on my B vitamins. Only B6
was low-15 nanomoles and 20 is lower bound. I mentioned that to Neurologist
and he cautioned watch out as you can get neuro symptoms from too much too.
The PCP prescribed 100 Mg/day.

•With both Calcium channel blocker and Beta blocker and Lasix, along with
Prednisone, my heart is getting conflicting signals. Calcium blocked should
trump all, addressing my bad Raynauds. Beta for headache prevention. Lasix
for foot/ankle edema and prednisone for inflammation and now my adrenals
too. Generally my BP stays low, like 100/60. Bit if I am in bad pain or
with infection, it shoots up.
The combination of all has to be impacting my balance, and maybe that’s why
it isn’t explored more-but something has changed where I have now become
imbalanced.

•yes, I have to get down to 1 owner of my meds…and less (but the right
ones)

•Dysautonomia was diagnosed by a pain management doc in 2005. He ordered a
tilt table study. My BP change was 30. When the change happened it felt
like I had a huge volume pf knives stabbing my body. The pain doc shared
his daughter had the illness so he knew the illness. So he told me get all
the books I could, wear compression host and take salt tablets. Then he
dismissed me as a patient…not anything else he could do. So there I
was-no plan, told with exercise and good diet, literature said I would have
7 years to live. Later docs were skeptically/ignored.

•the irony I saw was that mineralocorticoids help in balancing out the
endocrine issues when there is ACTH depletion and ACTH helps in signaling
adrenals to produce cortisol. To me it seems ironic and maybe that old
diagnosis needs revisiting. I told my PCP and she didn’t want to explore
because a positive result could happen just with meds I am on…but doesn’t
that say we need meds reviewed, period? I am going to raise this with
Neurologist…

Thanks for talking through this, I appreciate.

REPLY

I have been sitting here reading all this, and I am equally saddened and in disbelief. I share so many symptoms, I can’t believe it. I was fine until January of this year. Had multiple symptoms, all at once. Headache, eye blurriness and discomfort, neck and back pain, tinnitus in right ear, chest pain and heart palpitations, digestive issues, no appetite, weight loss, constipation, pins and needles in extremities, muscle pain and weakness in arms, legs, hands, and feet, dry skin, different spots on skin, and over the past few months, major hair loss. Add menopause symptoms to this, and I feel like I have been poisoned and dying sometimes. I have been to the ER 3 times regarding the chest pain, had tests and scans done, all ok. Saw cardiologist, had chest ct done, looked normal. Was diagnosed from hospital with Gerd and gallstones, had gallbladder removed in March. This solved zero of my issues, and I feel has actually made new symptoms, and made others worse. I’ve been to two different gps, a cardiologist, a urologist, a gynecologist, neurologist, gastroenterologist, an optometrist, and rheumatologist. Have had all the tests and procedures, and have no answers. My ANA has been positive four times, but other inflammatory markers are good. Also seeing hematologist for blood monitoring. I have an upcoming D&C scheduled for a fluid filled cyst or deposit in my uterus, and also a ct scan of abdomen/pelvis this Friday. So far, I have been given antidepressants, gabapentin, nexium, multiple antibiotics for recurrent Utis, Plaquenil, even though I’m not formally diagnosed with lupus, and metoprolol for HBP. I take supplements, when I can tolerate them, as I have daily nausea. I also get anxiety and panic attacks, and was just recently prescribed Lorazepam, to take as needed. I had to beg to get them, as doctors don’t want to prescribe them anymore. To date, the Lorazepam is the only medicine that gives me any relief from this madness. Can’t explain it, but it’s true. Not one doctor has any inkling of what’s happening, but I am desperate for answers! I am coming up on an almost 50 lb. weight loss! Very frightened and tired of being sick!

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@debdeb

I have been sitting here reading all this, and I am equally saddened and in disbelief. I share so many symptoms, I can’t believe it. I was fine until January of this year. Had multiple symptoms, all at once. Headache, eye blurriness and discomfort, neck and back pain, tinnitus in right ear, chest pain and heart palpitations, digestive issues, no appetite, weight loss, constipation, pins and needles in extremities, muscle pain and weakness in arms, legs, hands, and feet, dry skin, different spots on skin, and over the past few months, major hair loss. Add menopause symptoms to this, and I feel like I have been poisoned and dying sometimes. I have been to the ER 3 times regarding the chest pain, had tests and scans done, all ok. Saw cardiologist, had chest ct done, looked normal. Was diagnosed from hospital with Gerd and gallstones, had gallbladder removed in March. This solved zero of my issues, and I feel has actually made new symptoms, and made others worse. I’ve been to two different gps, a cardiologist, a urologist, a gynecologist, neurologist, gastroenterologist, an optometrist, and rheumatologist. Have had all the tests and procedures, and have no answers. My ANA has been positive four times, but other inflammatory markers are good. Also seeing hematologist for blood monitoring. I have an upcoming D&C scheduled for a fluid filled cyst or deposit in my uterus, and also a ct scan of abdomen/pelvis this Friday. So far, I have been given antidepressants, gabapentin, nexium, multiple antibiotics for recurrent Utis, Plaquenil, even though I’m not formally diagnosed with lupus, and metoprolol for HBP. I take supplements, when I can tolerate them, as I have daily nausea. I also get anxiety and panic attacks, and was just recently prescribed Lorazepam, to take as needed. I had to beg to get them, as doctors don’t want to prescribe them anymore. To date, the Lorazepam is the only medicine that gives me any relief from this madness. Can’t explain it, but it’s true. Not one doctor has any inkling of what’s happening, but I am desperate for answers! I am coming up on an almost 50 lb. weight loss! Very frightened and tired of being sick!

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Hi, Clearly something happened but were all of these changes abrupt or did they develop over a prolonged period of time?
So your ANA is normal now?
Which “other inflammatory markers” have you had checked? Just a note that most tests for autoimmune markers don’t directly relate to inflammation. CRP and ESR are usually enough for that.
You don’t mention thyroid tests but I assume that those were done. How about anti thyroid antibodies, as in TPO?

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Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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@debdeb

Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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TPO won’t tell you everything but it might be a clue if its strongly positive and matrixes with some other things.
If you can get hold of your test results you should review and consolidate them to make sure you don’t recover old ground and that due diligence was done for the autoimmune big hitters like Lupus, Sjogren’s, MCTD, etc.

Here’s a reference of autoimmune diseases which if you page through you’ll get to lab tests.
https://labtestsonline.org/understanding/conditions/autoimmune/start/1
It might not be autoimmune. Did they test for infections that can leave systemic effects like Lyme and brucellosis?

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@debdeb

Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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I know i was negative for the biggies, but don’t think they tested for Lyme or brucellosis. I just received blood draw results from last week, and my fasting glucose was 104, which I believe is considered pre diabetic. But, that shouldn’t be causing all these symptoms, I wouldn’t think. What is TPO?

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@debdeb

Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

Jump to this post

Right, 104 could indicate pre-diabetes but that’s not going to cause a lot of obvious problems. I just picked brucellosis out because it can cause odd symptoms but you probably want them to test for Lyme for starters. Maybe a toxicology screen if you’ve been exposed to chemical or metallic agents, rare.

TPO is for a type of anti-thyroid antibodies present in hypo and hyperthyroidism and can co-occur with other immune diseases, but you say they tested for the big hitters. Unless you’re having thyroid symptoms its probably a long shot as well.

REPLY

I have so many issues, it’s mind boggling! I don’t know where to start. I research, but I have so many symptoms of so many things. The doctors all look like deer in headlights when I start going over all my symptoms. I would love to just feel normal again.

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@debdeb

I have so many issues, it’s mind boggling! I don’t know where to start. I research, but I have so many symptoms of so many things. The doctors all look like deer in headlights when I start going over all my symptoms. I would love to just feel normal again.

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Symptoms are subjective. Tests are objective. That’s why I said to collect the tests and see what looks in and what looks out. When there’s a lot involved its got to be a process of elimination.

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I started out with 6 little dark red spots on my legs woke up the next day with bumps bright red swollen and they even started to connect and become patches. The next day each bump had a black head or peeling like it i pick at it will leave a hole. I went to the ER and this doctor in training told me i had chiggers. (Little crab like red forest bug ) l dont camp and live in city. So i went and got second opinion and was told i have leukocytoclasttic vasculitis. Im so scared because the rash looks so horrible.and my legs look just like the site on internet. I was given a type of steroid which suppose to cure my system and stop the attack. Please pray for and i will do the same for all of you.

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