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Multiple Sclerosis (MS) - please introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Oct 20, 2016

Let's talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

babette | @babette | Jun 5, 2019
In reply to @johnbishop "Hi @babette, I've had a heavy feeling in my legs off and on over the past..." + (show)
@johnbishop

Hi @babette, I've had a heavy feeling in my legs off and on over the past 5 or so years but nothing like you have experienced. I was diagnosed with lymphedema a little over a year ago and have been wearing compression socks to help with the swelling. I found an article that speaks to heavy feeling in the legs that may provide some more information for you.

What causes heavy aching legs?
-- https://www.medicalnewstoday.com/articles/321670.php

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Thanks for the article! I have been very frustrated about getting so little exercise but the discomfort in my legs - and now lower back - make it really challenging. I feel like I need to go to the doll hospital!

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srountree3006 | @srountree3006 | Jun 5, 2019
In reply to @babette "@srountree3006 - Why can't your doc just order the MRI already? If it's a priority for..." + (show)
@babette

@srountree3006 - Why can't your doc just order the MRI already? If it's a priority for YOU to know what's up, it should be her priority too. Maybe get a second opinion?

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I agree. It's not like she's paying for it, I am! I run into this a lot unfortunately. Doc sees diabetes and suddenly I can't possibly have anything else.

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bumble81 | @bumble81 | Jun 5, 2019

How many of you were diagnosed without having oligoclonal bands?

And do any of you have intermittent episodes of ringing in a ear and sudden hearing loss that comes and goes?

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vivib | @vivib | Jun 7, 2019
In reply to @babette "Welcome - Have you had a lumbar puncture (spinal tap)?" + (show)
@babette

Welcome - Have you had a lumbar puncture (spinal tap)?

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Yes I did. It was slightly elevate my protein
I recently got my igg tested and my subclass 1 was elevated too. Now legs and right side are significantly getting worse.and now another symptom is a lump on th e.r bottom of my throat. Getting flushed at times and coughing..so par for the course my doctor is sitting on the tests like ultrasound for my thyroid and blood tests. And urine tests..as I still have 2 plus blood in my urine for a year
Ugh so frustrating but I keep doing what I gotta go.mbut my family doesnt understand why I am slower than I used to be and hard to do things with my hands..like time shoes or open packages or jars we ith my right hand. I feel bad my girls know me as a strong woman I think that's what bothers me the most. Dont want to let my girls down..plus i am a granny now 🙂

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2 replies
vivib | @vivib | Jun 7, 2019
In reply to @vivib "Yes I did. It was slightly elevate my protein I recently got my igg tested and..." + (show)
@vivib

Yes I did. It was slightly elevate my protein
I recently got my igg tested and my subclass 1 was elevated too. Now legs and right side are significantly getting worse.and now another symptom is a lump on th e.r bottom of my throat. Getting flushed at times and coughing..so par for the course my doctor is sitting on the tests like ultrasound for my thyroid and blood tests. And urine tests..as I still have 2 plus blood in my urine for a year
Ugh so frustrating but I keep doing what I gotta go.mbut my family doesnt understand why I am slower than I used to be and hard to do things with my hands..like time shoes or open packages or jars we ith my right hand. I feel bad my girls know me as a strong woman I think that's what bothers me the most. Dont want to let my girls down..plus i am a granny now 🙂

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I am getting my reports together and gonna try to arrange appt at the mayo clinic God willing soon. Not sure if I should wait for after my daughters wedding in september..I know probably not a good idea to wait

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2 replies
bumble81 | @bumble81 | Jun 7, 2019
In reply to @vivib "Yes I did. It was slightly elevate my protein I recently got my igg tested and..." + (show)
@vivib

Yes I did. It was slightly elevate my protein
I recently got my igg tested and my subclass 1 was elevated too. Now legs and right side are significantly getting worse.and now another symptom is a lump on th e.r bottom of my throat. Getting flushed at times and coughing..so par for the course my doctor is sitting on the tests like ultrasound for my thyroid and blood tests. And urine tests..as I still have 2 plus blood in my urine for a year
Ugh so frustrating but I keep doing what I gotta go.mbut my family doesnt understand why I am slower than I used to be and hard to do things with my hands..like time shoes or open packages or jars we ith my right hand. I feel bad my girls know me as a strong woman I think that's what bothers me the most. Dont want to let my girls down..plus i am a granny now 🙂

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My protein was also slightly elevated.

Edit: sorry I thought you were responding to my question.

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1 reply
srountree3006 | @srountree3006 | Jun 7, 2019
In reply to @srountree3006 "I have documented symptoms, flares and progression over 4 years of multiple sclerosis and my doctor..." + (show)
@srountree3006

I have documented symptoms, flares and progression over 4 years of multiple sclerosis and my doctor will not order MRIs before testing me for lupus (no symptoms) RA and breast cancer...this seems to me like a waste of time. I understand the need to rule out similar issues but these are not similar to my very specific symptoms. She maintains (without tests) that my nerve issues are a result of diabetes I was just diagnosed with and haven't had long enough nor am I old enough to have developed such damage.

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**Update**My regular doctor told me I was "slightly anemic" 2 months ago and if I'm tired I should take a B12 supplement. Blood work on Wednesday revealed that I am severely low in iron. My B12 and Folate are normal.

My regular doctor said I am probably pre-menopausal despite no changes or problems in my cycle aside from being slightly heavier. She said lab work would show this via a high LH level. My LH is actually quite low.

My regular doctor said every neurological symptom I am having is related to my diabetes despite the fact that my A1C is a 5.9 and has been UNDER 6.4 FOR ALMOST TWO YEARS.

My regular doctor has literally been wrong about EVERYTHING.

My regular doctor is fired.

Saw my Endo today. We are starting with an iron supplement but with all of the gastro issues I've been having he anticipates infusion will be necessary.

These lows account for my tachycardia, exhaustion, low blood pressure, headache and dizziness and feeling cold.

He further said MRI IS ABSOLUTELY NECESSARY because all of my symptoms point to something happening in my spine. He is sending me to a physiatrist ASAP as they can do everything a neurologist would do as far as testing without the 6 month wait.

Still waiting to hear from cardio.
Scheduling endoscopy to find out why my body won't absorb iron, because I eat a lot of it.
Scheduling analysis of Scn9a gene mutation to confirm primary erythromelalgia that occurred in adolescence as strange sensation could be attributed to that history. There is a 50% probability of passing this down.

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1 reply
vivib | @vivib | Jun 8, 2019
In reply to @bumble81 "My protein was also slightly elevated. Edit: sorry I thought you were responding to my question." + (show)
@bumble81

My protein was also slightly elevated.

Edit: sorry I thought you were responding to my question.

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I was:) just so frustrated getting worse and worse and no one is figuring it out

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vivib | @vivib | Jun 8, 2019

I mean if a doctor feels a lump and has other symptoms dont you think they would send you for testinf..mine didnt and it's been 3 wks..my other doctor waiting 1yr and half to even suggest mri..because I have so many different symptoms they just look at me like I have 3 heads and makes jokes like put me on mystery diagnosis..not funny I am a new grandma..I have a wedding coming up in 3 months dont jave time for jokes

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Leonard | @jakedduck1 | Jun 8, 2019

@vivib
Hi there,
I hope you advocate and speak up for yourself when your doctor acts like that. Did your doctor give you a diagnosis? If you have insurance he won’t be paid without one although s/he could be non specific. They obviously don’t have a clue about what’s wrong or worse, they don’t care. I’d be looking for a new doctor.
Take care,
Jake

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