21, newly diagnosed and looking for guidence (meds, exercise, diet, etc.)

[JLangas]

Hello MS community,

I have recently been diagnosed with MS and I am 21 years old. I have been forced to quit college volleyball because of my symptoms and the psychological toll it has taken on me. I have a wide net of support and I am grateful for them everyday, but it is difficult to explain to them how this disease is effecting me emotionally. My mother in particular has been difficult to deal with since she becomes extremely emotional and I feel a burden to hold my self together, appear that I am in control of my emotions and finding my path with this disease. In reality, I've never felt more out of control in my life. I am scared. My neurologist has suggested that I join this site and research what medications might fit me, but after reading many peoples posts I feel comfort in how others have shared their experiences. Anyway, I am so happy I have this as a resource.

The disease has presented in tingling in my hands and feet, fatigue, hearing loss and vertigo. I am also D3 and B12 deficient. The most frustrating part is the vertigo. The only exercise i can do without becoming dizzy and disoriented is swimming. I wish that I could go back to my active life style and then maybe feel like I have some control over my condition.

Does anyone have medication suggestions for the vertigo or exercises that limit head and eye movement?

My doctor also suggested gilenya, tecfidera or copaxone as some of the better options for me. Generally, I am just interested in other's experiences with these drugs, particularly young, active people like myself.

Lastly, has anyone out there found a diet that has positively effected their symptoms?

Thanks for reading!

-J

[Ant1981]

Hi

Hello MS community,

I have recently been diagnosed with MS and I am 21 years old. I have been forced to quit college volleyball because of my symptoms and the psychological toll it has taken on me. I have a wide net of support and I am grateful for them everyday, but it is difficult to explain to them how this disease is effecting me emotionally. My mother in particular has been difficult to deal with since she becomes extremely emotional and I feel a burden to hold my self together, appear that I am in control of my emotions and finding my path with this disease. In reality, I've never felt more out of control in my life. I am scared. My neurologist has suggested that I join this site and research what medications might fit me, but after reading many peoples posts I feel comfort in how others have shared their experiences. Anyway, I am so happy I have this as a resource.

The disease has presented in tingling in my hands and feet, fatigue, hearing loss and vertigo. I am also D3 and B12 deficient. The most frustrating part is the vertigo. The only exercise i can do without becoming dizzy and disoriented is swimming. I wish that I could go back to my active life style and then maybe feel like I have some control over my condition.

Does anyone have medication suggestions for the vertigo or exercises that limit head and eye movement?

My doctor also suggested gilenya, tecfidera or copaxone as some of the better options for me. Generally, I am just interested in other's experiences with these drugs, particularly young, active people like myself.

Lastly, has anyone out there found a diet that has positively effected their symptoms?

Thanks for reading!

-J

hi and welcome to the msworld forums... I know it’s not ideal to end up here but such is life.

i am newly diagnosed myself, sept. 2017, had a nasty flare up that put me into a wheelchair and months of PT. I could hardly feed myself let alone walk. Steroids eventually brought my flare to an end and now I’ve recovered so well I went from wheelchair, walker, cane and now hiked for 8 hrs. And running on treadmill, lifting weights and fully active. I was in construction and now I’m in school for a better job.

As as far as diet is concerned there’s no particular diet that is for MS, but I eat healthy avoiding junk, saturated fats, dairy products, sugar in excess and lots of fruits and vegetables.

ive been prescribed tecfidera and use it since November 2017. Absolutely no side effects.

I was scared too... terrified but the support and wealth of knowledge here is unbelievable and got me through my worst time. Now I’m living well with MS and I’ll m sure you will too.

all the best

[Mamabug]

Welcome. I'm glad you're finding us to be a resource.

Hmmm. Guidance re: meds, exercise, diet, etc. That's a big question.

1. Meds: I'm on Copaxone and it served me well for a lot of years. I started on Betaseron in 2003 and switched to Copaxone in 2008. It has been much more effective for me than Betaseron was, but we're all different. However, at this point, I've had MS for 16 years, and seem to be transitioning from RRMS (relapsing remitting MS) to SPMS (secondary progressive MS). I'm not sure if anything works for me at this point, and I wouldn't be surprised if my MS Specialist takes me off in a few years.

Copaxone is one of the older MS meds. Some people recommend the newer meds because they might treat MS more aggressively, which could delay progression in the future more effectively. However, some of the newer meds also carry more risk. That's a conversation you might want to have with your doc.

Please consider checking out our Medications and Treatments forum if you haven't already: https://www.msworld.org/forum/forumd...amp-Treatments

2. Exercise: I'm sorry you've had to give up college volleyball. MS seems to be an illness that hits us with losses. My doc really emphasizes exercise as a way to delay progression. (I wish she had told me that years ago; it's something that she has only begun to bring up in recent years as my MS progression is increasing.) She says that, although it is also important to maintain strength, aerobic exercise is what helps to delay progression. So, although you need to give up volleyball, I'd encourage you to find other exercise to replace it with.

You may wish to join our weekly exercise check in The Wellness Room. https://www.msworld.org/forum/forumd...-Wellness-Room . I expect that you have the ability to be much more active than most of us, but you are still very welcome.

Regarding vertigo and exercises that limit head and eye movement: You may wish to request your doctor to refer you to a physical therapist that specializes in vestibular therapy. At one point, I had extreme dizziness. PT was able to help to determine which head movements triggered the dizziness and give me exercises to create, at tolerable levels, dizziness. I was able, over weeks, to re-train my brain to tolerate those movements and the dizziness resolved.

3. Diet: There are different MS diets that some people recommend. McDougall's, Swank, Wahls. You could google them.

I've recently started supplementing my traditional medical care (MS specialist and primary care physician) with a functional medicine doctor. He recommends no wheat and no dairy. You can read about my experience with this doctor here, if you're interested: https://www.msworld.org/forum/showth...ree-sugar-free

It's a pretty restrictive diet. If you aren't ready or interested in pursing that, you might want to consider cutting back on those foods. One of his quotes is "Dairy is the devil." And, some people believe that cutting back on wheat is ineffective -- that you must quit it altogether.
There is anecdotal evidence that no wheat and no dairy is helpful. However, my MS doctor thinks it's all "hooey". She believes in eating a healthy diet, but does not believe anything beyond that helps MS. So, we all need to weigh what we hear and what we read and determine, for ourselves, how much to believe and which direction to follow.

Some of us also take supplements or use complementary or alternative options. https://www.msworld.org/forum/forumd...nes)-therapies

[Carlyle]

Hi,Sorry this has happened to you.My neu.looked at my mri to see if the med. is working.Ive been switched a lot of times through the years.Keep active is good for muscles.Dave

[marti]

Welcome to the group. Glad your neuro was wise enough to recommend this page. So sorry to hear you are facing MS, but it can be a slow ride for you.

I totally understand the dizziness! This was my first symptom and remains my worst one. Sorry to tell you I have not found anything that really works. I've had many tests to rule out other things, but MS is still the #1 cause of the dizzies for me. I've fought with this symptom for 17 years!

I started on Avonex when I was first dx then went quickly to Copaxone. I think it worked pretty well until I started having weird side effects. But those didn't come until years later. I was finally taken off the meds and have remained fairly stable. Still walking, still functioning pretty well.

Not sure about activity. It burns me that at 68 years old I can't do the simple exercises that some can do. But, my age is against me. You are young enough that you have time to fight this and will probably see advances in treatments before long.

Keep checking in here... new ideas come up all the time.

[Jules A]

Hi and Welcome! Glad you found us but sorry you have to be here as they say.

I'm a firm believer in exercise for body and soul. Until you find something else, if you tolerate swimming I would do it as consistently as possible. I also attempt to eat a healthy diet and maintain an appropriate weight but I don't do anything too regimented. According research smoking is a modifiable factor that has been shown to have a negative outcome on people with MS.

Although it is one of the older medications I have been stable on Copaxone for 13 years. It has been very well tolerated with the exception of lipodystrophy which appear as dents in my skin. I mostly inject in my thighs and butt which aren't out in the public's eye anyway. I know it happens but not sure how frequently.

I have been blessed in that my MS symptoms are manageable so I have been able to continue living my life at full speed ahead. I worked the entire time through undergraduate and grad school and at the present put in about 45 hours a week. Although I'm older and heavier I'm still able to work a double shift and run a 5k in just over 10 minute miles which I know sounds slow to actual runners but is a big deal for me.

Best of luck to you and please keep us posted.

[SNOOPY]

Hi JLangas and welcome to MSWorld

I'm a firm believer in exercise for body and soul. Until you find something else, if you tolerate swimming I would do it as consistently as possible.

I whole heartedly agree.

When I was diagnosed I had lost the majority of my mobility. My Neurologist told me the best thing I could do is walk, I looked at him with this expression and he told me "I know you are struggling to walk but walking will help. Bless his heart, he was right. It took almost a year to regain my mobility, but I did. I truly believe exercise and working with a Physical therapist, when needed, has helped immensely.

[pennstater]

Hi J and welcome.

A new diagnosis was overwhelming for me. The first year was rough, the second kept getting better. At about the two year mark, I had moved to full acceptance and felt more like myself again.

Aside from this site, one of the things that helped me was talking to a psychologist. The therapy sessions gave me a safe place to talk about my fears and struggles, and work thru the anger and other stages of grief. I waited to start until about the 10 month mark. I wish I had started sooner. It was great to be able to get upset without worrying that I was upsetting my family and friends.

I am sure as a college volleyball athlete, you take great care of yourself and know how important exercise and a healthy diet is. I am sure you miss volleyball, such a great sport. Keep swimming. You will see lots of people do yoga. I don't and should, but isn't there a gentle yoga that I would guess has slower movements, but I know not what I am talking about! Maybe that is an option?

Like mamabug, I also benefitted from vestibular therapy. It is PT designed to build up a tolerance to head movements. It doesn't work for everyone but is worth a shot. Since the PT induces the dizziness in order to increase tolerance, you need someone to drive you (if you are able to drive) and give yourself time to recover after it. Especially in the beginning. I would be nauseous from it.

I was on Avonex and Rebif, but kept relapsing. So we switched to Tysabri, infusion based. I love it. It stopped my progression. Some people on the board actually improved symptoms while on it. It is not designed for that, but it was a plus. My largest spinal lesion remained unchanged on Avonex and Rebif, but shrunk by 1/3 after starting Tysabri. No new lesions either. When I start getting dizziness returning, I start the exercises up again on my own. I should just do them a few days a week anyway.

Tysabri has potential risks, especially if you test positive for antibodies to the JCV virus. There is a risk assessment for developing PML, a brain infection, based on the titer level of JCV when positive and lenghth of time on the med. At a certain point, they extend the dosing from every 28 days to every 5-8 weeks based on the above to mimize PML risk.

I am still negative for the JCV virus and am every 4 weeks. I subscribe to the theory that you should pick the meds with the strongest efficacy rates and fight it as hard as you can, which Tysabri leads the pack. I wish I had switched earlier. That being said, it really is a personal decision based on your own risk tolerance and insurance.

As for Mom I am sure she is afraid for you. Hopefully, as you get more educated about MS, she will too and both of you can adjust to your diagnosis together. Just as you need to allow yourself to go thru the stages of grief, she will too.

Again, welcome. Good luck at school.

[Myoak]

Hello JLangas!

You are going to be fine! Your body is going to recover from this episode and you will discover a way forward through this with great success. If you want to win, and I know you do, keep learning! Just as you are doing.

Will you do something as part of your investigation into MS?

Will you look at HSCT and let me know what you think of it?

I will make some more comments later, if you don't mind.

[ru4cats]

JLangus,

I’m so sorry to hear of your MS diagnosis. 21 is so young when your future lies ahead. However, believe it or not, a diagnosis of MS today provides you with the opportunity to live a full life, depending on the choices you make. This was not the case when you were first born. A diagnosis of MS in the late ‘90’s was not pretty, with injectables the only available treatment.

Because of your age, your body has the ability to heal damage that has already occurred. I was 58 at diagnosis, and this option didn’t exist for me. However, drug choice will be critical to this healing. In order to heal, you need to radically slow down and potentially even stop the inflammation by preventing those pesky relapses.

You have begun a war with your immune system and the first choice you must make is a general to lead the battle. There are lots of new medications, and you need the best. You don’t want to take a squirt gun to a knife fight. I have spent the 8 years since my diagnosis (1 year after I retired as a librarian) researching all the new medications as they arrived. Current information shows that the infusions are the best: Tysabri, Ocrevus, or Lemtrada (the last choice). Needless to say, I don’t agree on the choices you were given to begin this battle.

The sticky “Chart for comparing DMT’s” under Medications and Treatments gives a good overlay of all the current medication. You want to choose a drug with the highest efficacy and safety profile with which you feel comfortable. With a greater risk comes a greater reward, but the risks are manageable. This webinar on Ocrevus is excellent on reviewing all the current medications and I encourage you to watch it all, even the Q&A.

https://www.youtube.com/watch?v=J4prsO-FDzs

I’m sure right now you are almost in a state of shock from the diagnosis, and the situation with your mom doesn’t help. If you feel overwhelmed, I would encourage you to find someone you trust to help you locate the information you need, an advocate. This advocate can help you navigate the medical system and help do research.

Once you are on a good medication, you can take some time investigating CAM therapies including diet, exercise, et al to see if any help. I’ve tried a great many, but my most important choice was my medication. I chose Tysabri and recently had infusion #100. I’ve never looked back.

We're here to support you and provide you with information to help in the decisions that lie ahead. Don't be afraid to ask.

[gargantua]

My doctor also suggested gilenya, tecfidera or copaxone as some of the better options for me. Generally, I am just interested in other's experiences with these drugs, particularly young, active people like myself.

Lastly, has anyone out there found a diet that has positively effected their symptoms?
-J

Hi and glad you're here JLangas. Here is my experience with exercise, diet, and medication. My neurologist figures I've had MS for around 15 years - a blip compared to some people here. I have no disabilities and the diet I have most observed my entire life has been the American Heart Association recommendations for low saturated fat, and lots of vegetables of every kind, with moderate exercise (walking about a mile a day minimum). But more recently after my diagnosis, I cut out dairy. That has made a huge difference in inflammatory activity like mucus and headaches. Because of my age and a recent major flare that lead to diagnosis (complete blindness in one eye) he prescribed Tysabri and I have only had one infusion so far. Because MS has been mentioned to me over the past 15 years already, my flare and diagnosis this year were less shocking than incredibly annoying and depressing. From the actual diagnosis, between my research and keeping bureaucracy moving forward, it took 7 months to get on treatment. Time passes quickly. The day after my infusion I felt nothing but massive relief - that now I could "let go" and get back to life. I still have a lot to work through and take care of, but it is good to see you are doing the most important thing first and that is to take care of yourself. Don't worry about handling other people's emotions; just tell them you love them, because their life is a journey too.

All the best, G

[MyGirlsMom]

JLangas,
I was so sad to read your post and that you have been diagnosed with MS so young. I can’t imagine how challenging this is for you and your family.

There are many good comments posted here...and many more to come. This is a great community to reach out get ideas on how to manage your MS.

As a mom, I know that working through this with your Mom will draw you closer. My girls were in kindergarten and second grade when I was diagnosed, although I had MS for probably 20 years before diagnosis. They grew to be compassionate and caring young women.

Best wishes to you! I am sure that you will play volleyball again...maybe not at the same level, but anything is possible. Please don’t give up hope!! 💕💕

[Carolinemf]

Hi,
Hey whats with the young n active comment?
51 yrs young n active thankyou!

I do find some things a little harder to do like cleaning the gutters or laying concrete or getting on and off horses or running away from a cranky cow but after almost 35 yrs with ms and raising 5 sons and running a business- things like waking up paralysed or not being able to speak aint gonna keep this ole chicky babe down!

With most relapses we do recover- you may find that after a while you may go quite a time without a relapse and its very possible that you may be able to play volley ball again.
My advice would be to try and do as much as you are able to and keep fit as you can so as to look forward to activities in your future- whatever the may be.
Because of your age, your body has the ability to heal damage that has already occurred. I was 58 at diagnosis, and this option didn’t exist for me. However, drug choice will be critical to this healing. In order to heal, you need to radically slow down and potentially even stop the inflammation by preventing those pesky relapses.

I agree whole heartedly with rucats:
""You have begun a war with your immune system and the first choice you must make is a general to lead the battle. There are lots of new medications, and you need the best. You don’t want to take a squirt gun to a knife fight. I have spent the 8 years since my diagnosis (1 year after I retired as a librarian) researching all the new medications as they arrived. Current information shows that the infusions are the best: Tysabri, Ocrevus, or Lemtrada (the last choice). Needless to say, I don’t agree on the choices you were given to begin this battle.

The sticky “Chart for comparing DMT’s” under Medications and Treatments gives a good overlay of all the current medication. You want to choose a drug with the highest efficacy and safety profile with which you feel comfortable. With a greater risk comes a greater reward, but the risks are manageable. This webinar on Ocrevus is excellent on reviewing all the current medications and I encourage you to watch it all, even the Q&A.""

JMHO
Hope this helps,
Caroline.