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.
@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!
Please go to a neurologist who deals with just neuropathy. Otherwise you’re putting yourself in for a long arduous miserable plight.
@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!
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.
@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.
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.
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.
Thank you for your kindness. My cardiologist advised me I have what is called CAN. Cardiac Autonomic Neuropathy.
I wish you all the best!