Multiple Sclerosis (MS) - please introduce yourself

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.

What city and state do you reside in. Your symptoms sound very close to what I was dealing around 2018/2019.

https://www.gbs-cidp.org

This is a good place to search for answers. Are you living close to a large city that would provide the option of a new neurologist's assessment? It took 4 neurologist and finally the guy that focuses on MS/ALS diagnosed me with CIDP. 4 to 5 years of searching and getting worse did take a toll on me physically and mentally.

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@brandilyn430

Hi! I'm 46 years old and have been having worsening symptoms (of what I wasn't sure because I never put them all together) for about 5 years now. I am a mother of 4 and an RN and I work all the time. If anyone here works in healthcare, you know we never take care of ourselves appropriately. It started with tingling extremities. Weird electric shock type pains. Some urinary incontinence, but rare enough that I wasn't paying attention. And again, 4 kids. But then I was walking one day about a year and a half ago and my whole bladder just emptied randomly. On and off I have trouble finding words. I've gotten very forgetful. But I was able to find excuses for most of that. With the incontinence I finally saw a doctor. I had an mri and this was the impression...
Impression
IMPRESSION
A few nonspecific FLAIR hyperintensities are seen in the periventricular and subcortical white matter with mild interval progression. Included in the differential diagnosis is a demyelinating process, an ischemic process, a metabolic process, a vasculitis, an ischemic process, sequela of migraine headaches, and other etiologies.

My doctor wanted me to see a neurologist as soon as possible. That was over a year ago. First available to be seen was 10 months out. And then we moved. My appointment had been scheduled for last November. Where we are now I brought this info to my new doctor. He was also concerned and also wanted neuro. They, too, are many months out. I'm kind of frustrated not knowing if this is an MS situation or if I'm fine just going about my life at this point because I don't have the time or energy to advocate for myself. I'm sorry if this is not appropriate to this page since I do not have a diagnosis. I just wasn't sure where to talk about it

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@brandilyn430 i hear your frustrations. I am going through the same. No incontinence though. But lots of pain, numbness, forgetfulness, extreme fatigue, etc. I have almost every single MS symptom. Finally getting an MRI. I wanted to suggest that you do NOT stop advocating for yourself! Please. You have a lot to live for, and as comfortably as possible. I gave up two years ago, in search for MS dx. I’m feeling much worse now. I will not give up this time. Please stand for yourself. Best of luck!

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@medmis

@brandilyn430 i hear your frustrations. I am going through the same. No incontinence though. But lots of pain, numbness, forgetfulness, extreme fatigue, etc. I have almost every single MS symptom. Finally getting an MRI. I wanted to suggest that you do NOT stop advocating for yourself! Please. You have a lot to live for, and as comfortably as possible. I gave up two years ago, in search for MS dx. I’m feeling much worse now. I will not give up this time. Please stand for yourself. Best of luck!

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Please go to a neurologist who deals with just neuropathy. Otherwise you’re putting yourself in for a long arduous miserable plight.

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@frattmaa

Please go to a neurologist who deals with just neuropathy. Otherwise you’re putting yourself in for a long arduous miserable plight.

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@brandilyn430 I am searching for a neurologist that specializes in MS. My neuro is great with migraines, but not too interested in my other concerns.. Thank you, I appreciate your advice!

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@medmis

@brandilyn430 I am searching for a neurologist that specializes in MS. My neuro is great with migraines, but not too interested in my other concerns.. Thank you, I appreciate your advice!

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I am Mark Frattini. I have small cider sensory neuropathy along with autonomic neuropathy. The autonomic neuropathy in my case is killing the nerves in my heart, bladder, eyes. I am on hospice because there is nothing to be done except pain management.

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@frattmaa

I am Mark Frattini. I have small cider sensory neuropathy along with autonomic neuropathy. The autonomic neuropathy in my case is killing the nerves in my heart, bladder, eyes. I am on hospice because there is nothing to be done except pain management.

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@frattmaa Mark, I am so sorry to hear this. I pray for God to give you the strength you need to go through this. I haven’t even heard of this condition before. Did it take long to get diagnosed? What were your symptoms? Only if you don’t answering, no pressure. Take care and God bless you.

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@medmis

@frattmaa Mark, I am so sorry to hear this. I pray for God to give you the strength you need to go through this. I haven’t even heard of this condition before. Did it take long to get diagnosed? What were your symptoms? Only if you don’t answering, no pressure. Take care and God bless you.

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Thank you for your kindness.
It took me about 5 years before I contacted a group of neurologists that just works with Neuropathy. That’s where I was diagnosed. Symptoms;
Pain, the pain is so bad some times non of my meds touch it. At that point i’ll contact my hospital nurse for help.
My eyes see just like when the eye doctor puts dilating dips in. My pupils do not constrict or dilate. It’s killed most of the nerves in the top of my heart and put me on a pacemaker cardiac meds , and a great cardiologist. I can’t pee because it’s killed nerves in my bladder.
It’s a horrible disease and I called it the gift that keeps on given me issues to deal with. I’ve had this 17 years now.
So my wife of 25 years left me because she was not going to spend her retirement taking care of me and watching me die. 4 boys and 25 years.
Please look up Autonomic Neuropathy for signs and symptoms.
I pray for all of us who have neuropathy.

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@frattmaa

Thank you for your kindness.
It took me about 5 years before I contacted a group of neurologists that just works with Neuropathy. That’s where I was diagnosed. Symptoms;
Pain, the pain is so bad some times non of my meds touch it. At that point i’ll contact my hospital nurse for help.
My eyes see just like when the eye doctor puts dilating dips in. My pupils do not constrict or dilate. It’s killed most of the nerves in the top of my heart and put me on a pacemaker cardiac meds , and a great cardiologist. I can’t pee because it’s killed nerves in my bladder.
It’s a horrible disease and I called it the gift that keeps on given me issues to deal with. I’ve had this 17 years now.
So my wife of 25 years left me because she was not going to spend her retirement taking care of me and watching me die. 4 boys and 25 years.
Please look up Autonomic Neuropathy for signs and symptoms.
I pray for all of us who have neuropathy.

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I am so sorry to hear how debilitating this is for you. I am sorry about your wife not sticking around too. That makes me sad. I will definitely look in to it. You’re strong, despite it all.

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@medmis

I am so sorry to hear how debilitating this is for you. I am sorry about your wife not sticking around too. That makes me sad. I will definitely look in to it. You’re strong, despite it all.

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Thank you for your kindness. My cardiologist advised me I have what is called CAN. Cardiac Autonomic Neuropathy.

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@frattmaa

Thank you for your kindness. My cardiologist advised me I have what is called CAN. Cardiac Autonomic Neuropathy.

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I wish you all the best!

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