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?

@brightwings

@bumble81
Hello, I am Bright Wings. I Accepted my diagnosis of MS in 1985. Note the word accepted…I was 35 before accepting what I had been told by many doctors before this last appointment.
I live very successfully with my MS. This is a dis-ease that does not go away. ACCEPTANCE of that is so important to the rest of your life.
So how do I live successfully with my MS? I RESPECT the fact I have it and I am going to have some good days and some more challenging days. That's the way it is.
I am PROACTIVE in protecting myself from being too hot or getting too cold, cuz it will come to mess me up for sure and steal my life as I know it and want it.
I GUARD my energy. Each of us has different ways the MS affects us. None of us will share the same story of our progression of symptoms. I often can not regenerate my energy after being too hot or cold or after stressful situations. It sucks when I run out of energy, cuz I know I don't get to play anymore for a while. Grin….
ATTITUDE is everything. I actively sought ways to learn to relax and let worries go…cuz worry sucks energy!!! Find the things that make you happy. Do them!!!!! When I am feeling sorry for myself, I am sucking my energy right out of me. Then my dis-ease takes over. I know I am making living with MS sound easy, it can be or not….its how you choose to live your life. Learning all these things has not been easy. It took many years to put this all together.
SLEEP is imperative to living a successful life with MS. When I don't get enough rest, my symptoms will get worse. I can not get back my energy as fast as when I am rested. Guarenteed…..
I REFUSE to allow this dis-ease to rule my life. So I live along side my MS. It is my constant companion. When I am EVER-OBSERVANT for conditions that are not beneficial for my MS, I don't go there…why, cuz then the MS takes over and I lose days weeks, months or years to the dis-ease. It's my choice. I would rather live my life with me being in control rather than my
dis-ease.
Ok, so that is how to live successfully with MS in a nut shell. By following the words in capitals, I get to be in charge of my life rather than this dis-ease taking control.
I use CBD to lessen the symptoms when they are present which is everyday. The cheapest and best brand I have found is Lazarus Naturals. On my worse days I use 1/2 tsp 3 x daily. The kind I use is CBD in coconut oil, 1200 mg of CBD. If you contact the company and send in a doctors note, now they have increased the discount to 60% over buying it at a store.
I will use CBD until the day I die! It changed my life that much. All my aches and pains went away. I receive no compensation from the company.
I write dis-ease each time because when I am living along side my MS, so many days I forget I have it.
I hope you will print this out and read it everyday.
My best to you, and who ever comes after this and reads it.
Now having written all that, I must also share the polar vortex got me. I am headed into the worse relapse in many many years. So I am being proactive to get myself into a better home that will be easier for me to control the temperature in the house cuz after an el Nino winter comes an incredibly hot summer. I almost died of cold inside my newly rented house a few weeks ago. So I am taking ACTION to get myself into a different home that is more MS friendly.
@lisalucier thanks for bringing me in here. I need to be here now.
BRIGHT WINGS not flying so high right now

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Hi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.

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@grammadoro

Hi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.

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Hi, @grammadoro – sounds like you've had a many-years-long path with MS. What symptoms are you experiencing from your disease?

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@lisalucier

Hi, @grammadoro – sounds like you've had a many-years-long path with MS. What symptoms are you experiencing from your disease?

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I’m currently mostly wheelchair bound, but can transfer by myself. I use a transfer board to get onto a shower chair, although I used to be able to use my walker and just step over the edge of the tub, sit on the seat and drag my right leg over. I’ve had some bouts of illness, I’m very susceptible to pneumonia. It’s tough to get back into walking when you’v been sitting so much. I’m doing exercises and plan to start physical therapy again next week. My goal is to be able to walk with my walker again to gain some independence. My husband is also in a wheelchair, but he has been a paraplegic since 1978. He gets my travel chair in and out of the van using a hoist. He is currently my caregiver.

Liked by Lisa Lucier

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@grammadoro

Hi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.

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@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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Many of you have shared some of your story here with multiple sclerosis (MS). I wanted to check in and see how things are going, and thought your responses would be beneficial to all the members in this discussion.

@srountree3006 – did you get the MRI you were hoping for?

@legalese1972 – how are your symptoms? Are you still feeling as though you are just trying to survive?

@bumble81 – were you able to get back to your old neurologist's office to see if they will order the MRI's and investigate the increased protein in your spinal fluid?

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I went for my follow up with cardiology this morning and by chance got a doctor who was filling in. He says my heart is fine other than the Pots and that it's insane of my PCP who is also in this medical group to withold MRI. He ordered a cervical, thoracic and lumbar this morning so now I am just waiting on prior authorization. I was so relieved I broke down in tears!

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Symptoms are still there, some days better than others, but still no MS diagnosis.
Mayo diagnosed me with Fibro and Central Sensitization. Trying to keep on top of my exercises to build my muscle back up that I lost over the last year.
I downloaded the Emilyn app to track symptoms since 95% of my symptoms are the same as MS. It's a good app. You can set medications reminders too.

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@legalese1972

Symptoms are still there, some days better than others, but still no MS diagnosis.
Mayo diagnosed me with Fibro and Central Sensitization. Trying to keep on top of my exercises to build my muscle back up that I lost over the last year.
I downloaded the Emilyn app to track symptoms since 95% of my symptoms are the same as MS. It's a good app. You can set medications reminders too.

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Recently had routine blood work, of course everything is pretty normal, except cholesterol because of my muscle loss and inability to exercise as much as I used to. Eating extremely healthy, fruits, vegetables, and lean proteins only. Cut out nightshade vegetables and noticed less flare ups. Rarely eat processed foods.

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@legalese1972

Recently had routine blood work, of course everything is pretty normal, except cholesterol because of my muscle loss and inability to exercise as much as I used to. Eating extremely healthy, fruits, vegetables, and lean proteins only. Cut out nightshade vegetables and noticed less flare ups. Rarely eat processed foods.

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@legalese1972 – did you change your diet following your diagnosis? Was this something a doctor recommended or something you discovered yourself about fewer flare-ups with different eating patterns?

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@lisalucier

@legalese1972 – did you change your diet following your diagnosis? Was this something a doctor recommended or something you discovered yourself about fewer flare-ups with different eating patterns?

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Doctor did not recommend. Just did a lot of research. I love nightshade vegetables, especially peppers. I've cut them completely out of my diet, increased my magnesium instake through topical lotions and my nerve pain and flare ups have decreased dramatically. Don't get me wrong, I still have symptoms daily, they're just not as bad and I'm not taking any opioids or benzos. Decreasing my intake of gabapentin, hoping to be off by the end of the year. I'm still struggling tremendously with fatigue. I hate taking medications, anything I can do without popping a pill that's going to screw up my brain, heart, or other organs, I'm all for.

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@lisalucier

Many of you have shared some of your story here with multiple sclerosis (MS). I wanted to check in and see how things are going, and thought your responses would be beneficial to all the members in this discussion.

@srountree3006 – did you get the MRI you were hoping for?

@legalese1972 – how are your symptoms? Are you still feeling as though you are just trying to survive?

@bumble81 – were you able to get back to your old neurologist's office to see if they will order the MRI's and investigate the increased protein in your spinal fluid?

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I got into my old neurologist office. She says at this time that my MS panel is negative and they do not diagnose without having oligoclonal bands.
She did not seem concerned about the increased CSF protein since it was just 13 points above normal. I guess we just ignore the increase in brain lesions?

She wanted to rule out some things. I think lupus was one. And so far all of the blood work is negative.

I also have a cervical MRI, Evoked Potentials, and a VNG scheduled.

Doctor offered me gabapentin for my muscle fasciculations but I declined as I did not want to take something that was hard to stop taking.

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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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@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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@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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@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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It's just been frustrating is all. It has been 5 years since this neurologist found lesions on my brain and lots of different tests have been run. Now I have an addition lesion and I worry irreversible damage is being done.

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@bumble81

It's just been frustrating is all. It has been 5 years since this neurologist found lesions on my brain and lots of different tests have been run. Now I have an addition lesion and I worry irreversible damage is being done.

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Hi, @bumble81 ! Your post just came across thru my email, and it’s interesting. I, too, have lesions on my brain that they thought could be MS except I’m too old. I went to a neuroimmunologist at the university Med center. From an MRI they diagnosed a rare autoimmune disease called CLIPPERS. THe treatment is high dose steroids. I’m better now but not where I want to be. Have you seen a specialist beyond the neurologist? I have some journal articles that I will see if I can get onto this site. Keep advocating for yourself! Go wherever you need to go! Will you get back to us when you find something out?
BYW, CLIPPERS stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. I now get rituxan twice a year and I’m trying to taper off the prednisone. Hope you can find out soon

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