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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.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 9, 2019
In reply to @srountree3006 "**Update**My regular doctor told me I was "slightly anemic" 2 months ago and if I'm tired..." + (show)
@srountree3006

**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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@srountree3006 Good morning! Sounds like you have a lot going on! Too much! If the Endo thinks you should have an MRI, ask him/her to set one up. Don’t wait for the regular doctor. That’s what I did. I kept telling my PCP that I wanted an MRI because I was sure I had a stroke. She didn’t think so, so I made an appointment with her partner. She ordered the MRI and they found lesions on my brain! I was 1/2 right. I still see my PCP because I like her and she takes extra care of me now. Always advocate for your self! Take a friend or family member to appointments and tell them to ask questions and write everything down. If your doctor keeps putting you off, make a complaint to the local medical board. You have too many things going on and you shouldn’t be ignored.
Keep in touch, please!

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 9, 2019
In reply to @vivib "I am getting my reports together and gonna try to arrange appt at the mayo clinic..." + (show)
@vivib

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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@vivib Good morning! I agree, get all your papers together and write down a progression of what’s happened and is still happening. You might also consider going to the university medical center in your state. They have great doctors. I would also suggest that you take a friend or family member to every appointment you have. And have a notebook with your questions, then you can write down their answers. Your friend/family member can also tell the MD what changes they have noticed. Good luck and don’t wait until after the wedding!

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1 reply
Leonard | @jakedduck1 | Jun 9, 2019
In reply to @becsbuddy "@srountree3006 Good morning! Sounds like you have a lot going on! Too much! If the Endo..." + (show)
@becsbuddy

@srountree3006 Good morning! Sounds like you have a lot going on! Too much! If the Endo thinks you should have an MRI, ask him/her to set one up. Don’t wait for the regular doctor. That’s what I did. I kept telling my PCP that I wanted an MRI because I was sure I had a stroke. She didn’t think so, so I made an appointment with her partner. She ordered the MRI and they found lesions on my brain! I was 1/2 right. I still see my PCP because I like her and she takes extra care of me now. Always advocate for your self! Take a friend or family member to appointments and tell them to ask questions and write everything down. If your doctor keeps putting you off, make a complaint to the local medical board. You have too many things going on and you shouldn’t be ignored.
Keep in touch, please!

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@srountree3006
Good Morning, well not really, I have dishes to wash and food to cook so honestly it couldn’t be a worse morning!!! But I hope it’s good for you.
Although I agree with @becsbuddy the medical boards, society and associations aren’t really designed for patients, at least not in California.
I filed a complaint with with our County Medical Society and it was a total disaster. Although the doctor was wrong about EVERYTHING and put it all in writing we still lost lost, I couldn’t believe it. The board totally ignored the proof which was extensive. The doctor said “Your father has Alzheimer’s and will never be any better than he is right now.” He was tied to the exam table with restraints on his each arm, each leg, over both arms and legs, waist, chest, abdomen and head, a total of 10 restraints and four people holding a man who was paralyzed from the neck down on a table. Even a dope like me knew better. I was told to put him in the van and take him 90 miles to the Veterans hsp. I asked the doctor “Since when do Alzheimer’s patients have 105 degree temps with massive infections and seizures.” He got completely well. Not possible with Alzheimer’s. We always won in court but when doctors judge other doctors beware, truth and facts are the last things they care about. Although possible to win against a group of doctors I doubt it happens often.
Good luck,
Jake

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1 reply
srountree3006 | @srountree3006 | Jun 9, 2019
In reply to @jakedduck1 "@srountree3006 Good Morning, well not really, I have dishes to wash and food to cook so..." + (show)
@jakedduck1

@srountree3006
Good Morning, well not really, I have dishes to wash and food to cook so honestly it couldn’t be a worse morning!!! But I hope it’s good for you.
Although I agree with @becsbuddy the medical boards, society and associations aren’t really designed for patients, at least not in California.
I filed a complaint with with our County Medical Society and it was a total disaster. Although the doctor was wrong about EVERYTHING and put it all in writing we still lost lost, I couldn’t believe it. The board totally ignored the proof which was extensive. The doctor said “Your father has Alzheimer’s and will never be any better than he is right now.” He was tied to the exam table with restraints on his each arm, each leg, over both arms and legs, waist, chest, abdomen and head, a total of 10 restraints and four people holding a man who was paralyzed from the neck down on a table. Even a dope like me knew better. I was told to put him in the van and take him 90 miles to the Veterans hsp. I asked the doctor “Since when do Alzheimer’s patients have 105 degree temps with massive infections and seizures.” He got completely well. Not possible with Alzheimer’s. We always won in court but when doctors judge other doctors beware, truth and facts are the last things they care about. Although possible to win against a group of doctors I doubt it happens often.
Good luck,
Jake

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That is awful! I'm so sorry. Luckily I have insurance that allows me to change doctors so I simply fired her. I got hit by a foul ball at a baseball game last night. It would have hit me in the head had I not honed my reflexes through karate before my symptoms started getting bad. The emergency room said the X-ray can't see the fracture because there is too much fluid and swelling but this morning I am able to move it much more so I don't think it is broken.

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vivib | @vivib | Jun 10, 2019
In reply to @becsbuddy "@vivib Good morning! I agree, get all your papers together and write down a progression of..." + (show)
@becsbuddy

@vivib Good morning! I agree, get all your papers together and write down a progression of what’s happened and is still happening. You might also consider going to the university medical center in your state. They have great doctors. I would also suggest that you take a friend or family member to every appointment you have. And have a notebook with your questions, then you can write down their answers. Your friend/family member can also tell the MD what changes they have noticed. Good luck and don’t wait until after the wedding!

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Thank you 🙂 I feel like I am getting worse everyday. I am calling my endo today to insist she calls in the tests. I dont know why it is taking her 2 wks to call it in. The lump I feel is getting bigger..and annoying cough. On top of that my whole right side is inflamed. Again no clear cut diagnosis. Anyone else on here have elevated igg subclass 1? Thank you for your responses:-) I hope to get the tests this week

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vivib | @vivib | Jun 10, 2019
In reply to @jakedduck1 "@vivib Hi there, I hope you advocate and speak up for yourself when your doctor acts..." + (show)
@jakedduck1

@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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Thank you I do
.constantly calling them and insisting on tests. Now like I said with this new symptom (the lump at the bottom of my throat..and achy chest and annoying cough..its kind of scary. I am calling the endo today who is sitting on the tests for 3 weeks already. I mean if gd forbid something is going on time is of the essence. Just so frustrating I have yet to find a doc who listens or makes fun of me saying maybe you are the lucky one and have many things going on at once..well I am a positive person thankfully but to say lucky one sarcastically..not right. On top of that my whole right side is inflamed visibly and even my youngest daughter feels the difference. Hopefully will have answers this week. Good bad or ugly ready for just answers. 🙂

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lavendoor | @lavendoor | Jun 10, 2019
In reply to @johnbishop "Hi Yulander, Welcome to Connect. Can you share what the new medication is? I don't have..." + (show)
@johnbishop

Hi Yulander, Welcome to Connect. Can you share what the new medication is?

I don't have MS but do have an autoimmune disease - small fiber peripheral neuropathy which was diagnosed this past March. A book that I found interesting that is written by someone who has MS started me on my journey of possible diet and nutrition changes that I can make to help my autoimmune disease and slow down progression. You may find it interesting also - http://terrywahls.com/about/about-terry-wahls/.

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John, I am interested in how/where you got your diagnosis of small fiber peripheral neuropathy. I have been diagnosed with painful diabetic peripheral neuropathy,which much of it has "faded". However, now it has moved into my right foot with a "vengeance" and am wondering if it has something to do with my torn fascia injury of 15 years ago. Also experiencing much muscle weakness in right leg, balance issues and fatigue, so appreciate the link to terry wahls. Mrs. N

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 10, 2019
In reply to @lavendoor "John, I am interested in how/where you got your diagnosis of small fiber peripheral neuropathy. I..." + (show)
@lavendoor

John, I am interested in how/where you got your diagnosis of small fiber peripheral neuropathy. I have been diagnosed with painful diabetic peripheral neuropathy,which much of it has "faded". However, now it has moved into my right foot with a "vengeance" and am wondering if it has something to do with my torn fascia injury of 15 years ago. Also experiencing much muscle weakness in right leg, balance issues and fatigue, so appreciate the link to terry wahls. Mrs. N

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Hello @lavendoor, welcome to Connect. I was diagnosed with idiopathic small fiber peripheral neuropathy at the Rochester Mayo Clinic. I posted my PN story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might also be interested in the following video by Dr. Wahls -- TEDxIowaCity: Minding Your Mitochondria With Dr. Terry Wahls
-- https://terrywahls.com/minding-your-mitochondria-dr-terry-wahls-at-tedxiowacity/

@jenniferhunter has a discussion here on Connect which may be beneficial as you mentioned you had a torn fascia injury 15 years ago.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you tried any therapy to help with strength and balance issues?

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Lisa Lucier | @lisalucier | Jun 10, 2019
In reply to @bumble81 "The neurologist said he did not want to see me until I got the other MRI's...." + (show)
@bumble81

The neurologist said he did not want to see me until I got the other MRI's. He said my test indicate I do not have MS. Did not give me any other information.

My panic episode have slowed. I'm am no longer have upwards of 20 a day but I do still have them just about daily. I call it panic because that is what the ER said it was. I do not'the really know how to explain it. It's a very bizarre feeling and fear is just one component of it. It doesn't respond to benzo, or antidepressants.

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HI, @bumble81 - is everything still on hold with your neurologist till you get the other MRIs?

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1 reply
Lisa Lucier | @lisalucier | Jun 10, 2019
In reply to @vivib "I am getting my reports together and gonna try to arrange appt at the mayo clinic..." + (show)
@vivib

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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Hi, @vivib - if you decide to pursue an appointment at Mayo Clinic, you may go to this link and connect with appointment specialists by phone or online to request to be seen http://mayocl.in/1mtmR63.

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