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