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?

I’m Annie. Trying to get a real diagnosis and prognosis and, hopefully treatment. I’m bedridden currently and am borrowing a wheelchair until I get my own. I can’t propel my wheelchair. So I’m pretty much home bound now.
I suffer from muscle atrophy and joint squeezing. I also have had 4 surgeries on my spine. I have brain damage and I am without family support and I have no advocate.
I’m a very positive person.
I know my brain can create new pathways, and I suddenly have lots of patience. I graduated pharmacy school in 2005 but was never able to earn with my degree.

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@mlk1956

Hi, my name is Michelle

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Hi Michelle. I’m new here

Liked by Lisa Lucier

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@hopeful33250

Hello @kennywood,

Congratulations on getting a call back from Mayo. It will be a good thing to be seen by a multi-disciplinary medical center like Mayo. From others who have reported appointments at Mayo, my impression is that each department consults with others so that you get the benefit of many different medical teams. As Lisa, @lisalucier, asked I'm assuming that you posted in the MS discussion group since your doctor has mentioned the possibility of an MS diagnosis. Is that the case?

Neurological disorders can be very difficult to diagnose because so many of the symptoms overlap. Over 20 years ago, I began with neurological symptoms (foot-dragging, balance problems, general weakness on the right-side extremities). The first neurologist I saw suggested it was early stages MS and the second said it was probably early stages Parkinson's and a third doctor said that they might not know for sure until the symptoms got worse. I finally did get a diagnosis around 15 years after the symptoms began to get worse and resulted in falls.

I know how confusing it is to wait for a diagnosis when the symptoms are so bothersome, but I'm looking forward to hearing from you again after your visit to Mayo.

If you are comfortable doing so, would you like to share your current symptoms? I'm thinking of things like balance problems, gait difficulties, freezing in place when you walk, vision problems, etc.

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I, also waited 15 yrs for a diagnosis. I was under the care of a D.O. While all my symptoms became serious. She told me there was nothing wrong with me. All the falls and injuries from shocks leading to temporary paralysis.
She refused to refer me to a neurologist.
It turned out I had to have two more surgeries and now am looking at shoulder surgery and possibly hip. I’m now bedridden hoping for N appointment

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@asquires

Hi Michelle. I’m new here

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Hi Michelle. I'm Todd. New also. How are you?

Liked by Lisa Lucier

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@tdonoho

Hi Michelle. I'm Todd. New also. How are you?

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Hi, @tdonoho – I'd like to add my welcome to Mayo Clinic Connect. Do you have a diagnosis of multiple sclerosis? If so, what types of symptoms are you experiencing or did you experience previously?

@asquires – congratulations on the pharmacy degree. That is a big accomplishment. Really hard to not be able to use it.

Without an advocate or family support, do you have social services or any other organization assisting you?

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@lisalucier

Hi, @tdonoho – I'd like to add my welcome to Mayo Clinic Connect. Do you have a diagnosis of multiple sclerosis? If so, what types of symptoms are you experiencing or did you experience previously?

@asquires – congratulations on the pharmacy degree. That is a big accomplishment. Really hard to not be able to use it.

Without an advocate or family support, do you have social services or any other organization assisting you?

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Yes. Low income a cleaning and cooking. It’s wonderful. I have so many issues and am relating to others finally in this format. My hands are quite crippled and I have trouble navigating the site. I’ll just keep trying thanks you guys

Liked by Lisa Lucier

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@hopeful33250

@ydawson Physical therapy is a great idea! Looking forward to hearing from you again.

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I’m just discovering that there is specific pt for ms. I go onlin and do some stretches and relaxation exercises. I also am a strong proponent of meditation.

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@ydawson

Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been a healthcare provider over 20+ years and I have seen how Multiple Sclerosis have crippled people throughout my career. Today they have no cure but the good thing is the medicine they have helped keep people alive and to continue to work with relapsing and remission. Next week I will be starting my new medication with the ability to continue to work. However, Multiple Sclerosis is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

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Hi yulander I’m Annie. I too used to be a healthcare professional. I hope to make friends with others with MS. I’ve never met anyone withMS

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My name is Annie. I have MS but don’t have a clear diagnosis of what type

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@asquires

My name is Annie. I have MS but don’t have a clear diagnosis of what type

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Hi, @asquires – have you met @brightwings @grammadoro @brightwings @babette and @johnbishop? They may have some input about your diagnosis of MS without a clear diagnosis of type as of yet, and may also have some thoughts about the stretches, relaxation exercises and meditation you talked about practicing.

@legalese1972 @vivib and @bumble81 – how are you doing lately?

@srountree3006 – what happened with the MRI you were hoping to have?

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Hi @asquires — Here is a workbook I found online that you can download and print that may be helpful for you. I think it's really great that you are proactive with your health.

Everybody Stretch: A Physical Activity Workbook for People with Multiple Sclerosis
https://mssociety.ca/en/pdf/EverybodyStretch.pdf

Liked by Lisa Lucier

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My name is Annie. I was diagnosed with MS five years ago. Somehow I Lost my diagnosis. I am almost bedridden 24 hours a day. My neurologist confirms that I have MS but not which type.
I have pins and needles all over my body. Add exhaustion all the time. My muscles have aytrophied to the point that they don’t support my weight.I have neurological pain, muscle pain, and joint stiffness. It feels like there’s sludge in my bloodstream.

My neurologist has not prescribed or referred me for treatment. The pain doctor she Referred refused to see me because my hands are too crippled to write. I’ve been told that there is nothing wrong with me in the past. I’m thinking about enlisting the aid of an anesthesiologist.

Why isn’t she Helping me? Should I just go to the ER? It’s very hard to hang out with the pain.

I meditate a lot and also try to move the muscles. My physician just gave me a Medrol dose pack. It helps so much with inflammation. My pt knows nothing about MS.
My Dr. is referring me to a better PT. This pattern repeats over and over. I can’t get the help I need where I live.
I’m hoping for an appointment with the Mayo Clinic.
Each day the pain gets intolerable .
Any advice?

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@asquires

My name is Annie. I was diagnosed with MS five years ago. Somehow I Lost my diagnosis. I am almost bedridden 24 hours a day. My neurologist confirms that I have MS but not which type.
I have pins and needles all over my body. Add exhaustion all the time. My muscles have aytrophied to the point that they don’t support my weight.I have neurological pain, muscle pain, and joint stiffness. It feels like there’s sludge in my bloodstream.

My neurologist has not prescribed or referred me for treatment. The pain doctor she Referred refused to see me because my hands are too crippled to write. I’ve been told that there is nothing wrong with me in the past. I’m thinking about enlisting the aid of an anesthesiologist.

Why isn’t she Helping me? Should I just go to the ER? It’s very hard to hang out with the pain.

I meditate a lot and also try to move the muscles. My physician just gave me a Medrol dose pack. It helps so much with inflammation. My pt knows nothing about MS.
My Dr. is referring me to a better PT. This pattern repeats over and over. I can’t get the help I need where I live.
I’m hoping for an appointment with the Mayo Clinic.
Each day the pain gets intolerable .
Any advice?

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Hi, @asquires – that sounds frustrating to not be getting the help you feel you need with your MS. If you are interested in going to one of the Mayo Clinic locations for a second opinion, you can do that online or via a phone call with this link
http://mayocl.in/1mtmR63.
Glad you've met @johnbishop. I'd like to introduce you to another Connect member who was treated at Mayo Clinic for another neurologic condition, @jenniferhunter. She may have some thoughts about getting a second opinion in general and about her care at Mayo Clinic.

Is there anything that would prevent you from going to Mayo Clinic or another major university hospital to get more input on the specifics of your diagnosis and treatment available, asquires?

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@lisalucier

Hi, @asquires – that sounds frustrating to not be getting the help you feel you need with your MS. If you are interested in going to one of the Mayo Clinic locations for a second opinion, you can do that online or via a phone call with this link
http://mayocl.in/1mtmR63.
Glad you've met @johnbishop. I'd like to introduce you to another Connect member who was treated at Mayo Clinic for another neurologic condition, @jenniferhunter. She may have some thoughts about getting a second opinion in general and about her care at Mayo Clinic.

Is there anything that would prevent you from going to Mayo Clinic or another major university hospital to get more input on the specifics of your diagnosis and treatment available, asquires?

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The Mayo Clinic denied me. After 15 years of constant pain and misdiagnosis many surgeries I just don’t want to continue anymore. My neurologist refuses to help me. My physician wants to help, but the university doesn’t take my insurance. I’m just in bed. My hands are so crippled I can’t use the remote . I have a great dog but that’s really all I have. I’ve done lots of research and there are lots of different options for me. I know it but can’t get help. I can no longer use the internet. No way to leave my apt. Thank you for responding.

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@johnbishop

Hi @asquires — Here is a workbook I found online that you can download and print that may be helpful for you. I think it's really great that you are proactive with your health.

Everybody Stretch: A Physical Activity Workbook for People with Multiple Sclerosis
https://mssociety.ca/en/pdf/EverybodyStretch.pdf

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Ty so much. It’s exactly what I want to do! My physician started me on carbamazepine. What a relief! I’m now searching for an MS specialist in Colorado.

Liked by Lisa Lucier

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