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?

@lisalucier

@bumble81 – thanks for the update on the testing you've been undergoing. Glad you are getting some answers, though it sounds as if you feel some symptoms you have had have not yet been accounted for in a diagnosis?

Your MRI, evoked potentials (I believe the same as described here https://newsnetwork.mayoclinic.org/discussion/contact-heat-evoked-potential-stimulation-cheps/), and a video nystagmography (VNG) are still to come, correct?

@legalese1972 – sounds like you've found nutrition can really make an impact on your symptoms. What does your doctor say about the fatigue that you've been experiencing?

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My PCP recommended I see my neurologist in regards to my fatigue. They tried the CPAP and it made it worse where I was falling asleep during the day. My appointment with my neurologist is at the end of August.

Liked by Lisa Lucier

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@bumble81

All of my blood work is in and as I suspected, I do not have Lupus and my ANA is negative. My ferritin and Sed rate is all normal. Not sure what else is left to test for.

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Have you had brain MRI

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@caregiver49

Have you had brain MRI

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I had one in 2015 that found 7 periventricular lesions. Then another December 2018 that found one additional small punctate lesion on right parietal lobe.

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Hi, my name is Michelle

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@mlk1956

Hi, my name is Michelle

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Hi Michelle I'm Kevin I have chairi!

Liked by Lisa Lucier

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@mlk1956

Hi, my name is Michelle

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Hello, @mlk1956 – welcome to Mayo Clinic Connect. Glad you connected with @duke77.

Do you have a diagnosis of multiple sclerosis (MS), or are you undergoing testing to determine if you have MS?

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Just back from my appointment. No lesions on my cervical spine so that's some good news. My inner ear is also in good shape.

I have been diagnosed with Ataxia.
Doc says the signals from my brain to my limbs are not working correctly but they do not know why.

Liked by Lisa Lucier

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@bumble81

Just back from my appointment. No lesions on my cervical spine so that's some good news. My inner ear is also in good shape.

I have been diagnosed with Ataxia.
Doc says the signals from my brain to my limbs are not working correctly but they do not know why.

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Glad you are getting some answers, @bumble81. Here's a thread specifically on ataxia you may be interested in is https://connect.mayoclinic.org/discussion/ataxia-1.

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@lisalucier

Glad you are getting some answers, @bumble81. Here's a thread specifically on ataxia you may be interested in is https://connect.mayoclinic.org/discussion/ataxia-1.

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Thanks. The Ataxia is just a symptom, I do not have the disease fortunately.

Liked by Lisa Lucier, Leonard

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@bumble81

Thanks. The Ataxia is just a symptom, I do not have the disease fortunately.

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@ bumble81

How is the Ataxia manifesting itself? Have they told you the cause?
Jake

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@jakedduck1

@ bumble81

How is the Ataxia manifesting itself? Have they told you the cause?
Jake

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The ataxia manifests as balance problems, clumsiness. I drop things a lot . No clear cause but the doctor said that signals from my brain to my legs is interrupted causing my balance problems.

Liked by Lisa Lucier

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Hello, I don't yet have a diagnosis, but I am 50 with a lifetime of symptoms that seem to be getting progressively more prevalent. Mayo just called my number today. They are looking at me from a headache/migraine perspective per my neurologist's PA's referral. One reason being that I have a pacemaker in my spine, which prohibits an MRI of that area (where I have been told things are a "hot mess.") He said the diagnosis doesn't matter, that he would just treat symptoms as they arose, anyway. Will Mayo take my health history and web it together, or will they laser focus on just this one symptom? Anyone? TIA

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@kennywood

Hello, I don't yet have a diagnosis, but I am 50 with a lifetime of symptoms that seem to be getting progressively more prevalent. Mayo just called my number today. They are looking at me from a headache/migraine perspective per my neurologist's PA's referral. One reason being that I have a pacemaker in my spine, which prohibits an MRI of that area (where I have been told things are a "hot mess.") He said the diagnosis doesn't matter, that he would just treat symptoms as they arose, anyway. Will Mayo take my health history and web it together, or will they laser focus on just this one symptom? Anyone? TIA

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Hi, @kennywood – welcome to Mayo Clinic Connect. Glad you are getting closer to potentially getting some answers for the lifetime of symptoms you've experienced.

What I'd suggest, since we are not medical professionals here on Connect, is to ask whomever is in contact with you about a Mayo Clinic appointment about what the process will be with your health history.

As you posted here in a multiple sclerosis discussion, wondering if you and your doctor are thinking this might be a potential diagnosis for you?

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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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@becsbuddy

@grammadoro I, too, use the CBD oil. I get it from Bluebird Botanicals. They do everything online. Just google them. I found them thru a nurse who had worked with MDs in a medical marijuana clinic. I’m afraid I can’t give you ideas of how much to use because everyone is so different. The company may have suggestions. Let me know if you’re successful! Becky

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Thanks for your feedback. Sorry I haven’t been on the site for so long, I’ve been so focused on my pt and other family issues, thankfully my nieces and nephews, not my own children, who seem to be doing well. I still haven’t started the cdb yet, but I’v been in touch with Lazarus naturals, and they have been very helpful. I also qualify for a 60% discount, which brings the price down a lot. I’ll probably be taking 50 units n capsule form, starting with once a day and seeing how that does. I’ll try to check more frequently in the future. I forgot I had this page saved on my web browser, so it will be much easier to get here 😀

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