For the past nine days I have been stuck in the hospital because they are going through the process of diagnosing my MS. So far I have done all the MRIs (have lesions in brian and spine), done the spinal tap (more bands than 85% of people with diagnosed MS), and am awaitng results of an EEG of my optic nerve. Though the doctors haven't came out and officially said I have MS, I have MS. Recently I have experienced loss of vision, headaches, strained eyes, a cold, wet, buring feelings in my feet, tremors in my upper body and right arm, and fatigue. I have also been stuck in the hospital for so long because my insurance doesn't want to send me to in-house rehab, yet the doctors recommend I go. I can't do anything at the moment other than sit here and would appreciate some help as to how I can start dealing with this condtion.
I guess some of my questions are: Have any of you has similar issues? Did dieting (paleo, Wahls's, etc.) help you? Do you find things like yoga, swimming, biking, etc., have helped control flares? Can you weight lift anymore to gain weight? Is blurred vision a long term thing or just part of a bought? Do hot showers and baths really cause a worsening of MS? Can you drink alcohol? What advice could you give me?
I'm 22, still in college, and am trying to figure out how to deal with this for the rest of my life. No one has told me anything and I would rather hear from real people that actually have MS rather than what some youtuber has to say about "the secret to beating MS" or the "top 10 most expensive and time consuming ways to eat things that helps with MS."
I was just diagnosed at the end of March-am also 22. When i was diagnosed they also kept me in the hospital and I did extensive research and bought books and found the paleo and wahls phenomenons. I tried both of them and I am doing a diet of my own accord with aspects of both of them. I find diet definitely effects me specifically junk food and dairy and nightshades (tomatoes, peppers, eggplants) as they cause inflamation. i find I have a lot more pain and symptoms whenever i eat tomatoes and peppers, which sucks cause i love them. Heat is one of my worst symptom inducers, I carry around a fan at work other wise my feet go numb. i get the numbness, fatigue, ms hug, blurred vision and some ambulation problems along with some speach problems.
I reccomend high dose vitamin D, turmeric, magnesium at night, and vitamin C. The D and C help with my energy. I have awful faituge to the point where i was put on adderall. Also Vitamin D has a big part to MS recent research has shown. the turmeric is for pain and preventative measures. and the magnesium is for any spasticity- which i have bad in my legs especially in the cold.
For my numbness, pain, blurred vision and ms hug I take CBD/ THC. Im in colorado so it's easy for me to get and my neurologist (also has MS) reccomends it as well. It helps me amazingly, especially for my blurred vision. It also helps with my balance and walking straight. All and all, it makes me feel more sober than when I am sober.
I amcurrently on Rebif. which is three shots a week. I reccomend medication along with diet and exercise. I come from a science/health background but its different for everybody.
The biggest thing for me that i reccomend is find a neurologist you trust and like. I had problems with the first neurologist.
I'm sorry you have to go through this but its not the end. and some days are harder than others and some days are great. Im still adjusting but educating yourself about this illness and knowing that it will change your life but it doesn't have to change everything is important. Be cautiously optimistic and take it one day at a time. feel better!
Thank you so much! I really appreciate the insight and advice!
The National MS Society can provide you with accurate, current and comprehensive information. We can also help you identify and advocate for what you need, when and how you need it. You are welcome to contact our MS Navigators. We are available from 7a.m. – 5p.m MT by calling 1-800-344-4867
or emailing firstname.lastname@example.org
We also have a lot of information on our website that may help answer some of the questions you have. I included some links below:
Wellness Discussion Guide
Heat and Temperature Sensitivity
Lastly, if your insurance is denying coverage for rehabilitation, you may want to view our information about Health Insurance Appeals.
I hope this information is helpful!
How you react to the unknown is also important, problem solving is an art and with ms it is mixed with science. Blending the mental physical and emotional self makes for priorities. What your needs are at the time, right now, and what is important to make you feel good, right now. As it says at the bottom of the page, Knowledge is power, and learning what works for you will give you the power to have a good life. ms is just another challenge that life has thrown us. Taking really good care of yourself is an art, one that is cultivated. Paying attention to what is good for you and sometimes bending the rules just to make sure we are not missing anything. Noticing how you react to things and what is injested is relevant. Resting before you get tired and sometimes overdoing it too, a little of this and a little of that. You will learn the right mixture for you, we are all different and what works is part of solving this puzzle.
My husband and I got on the Wahls Paleo diet last year. Some improvement in energy and a general felling better. His MS still kept getting worse and he had a relapse. I also had him on anti inflammatory supplements like ginger, tumeric, and aloe vera gel. In August we traveled to India and he had HSCT to stop his MS. There are several HSCT pages on Facebook. There are also several scammer stem cell places in the the United states. Right now Northwestern in Chicago is doing a HSCT trial with Dr, Burt but my husband did not get into the trial so we paid for it in India.