Does high dosage of vit D3 ameliorate the symptoms of MS ( spasticity,heaviness and numbness on the right side of the body,therefore difficulty in walking,writing etc,loss of balance,occasional cramps, incontinence) and if so,what would the right dosage be?
He has been diagnosed as having primary progressive MS. Any suggestions on other treatments for the same would be greatly appreciated.
Thank you.
I have my vitamin D checked with bloodwork each time. I take 2000iu daily in the summer and 4000iu in winter. Years ago it was 5000iu up to 10,000iu daily but my system has improved and produces more, that’s why blood work is important. Vitamin B helps but also needs checked, I do shots as the are way more effective. Also eating habits are different. Good luck and check with your doctor c👍🏼🙏😉🐾🐾
If there was a "magic dosage" of Vit D3 proven to alleviate all the symptoms you listed, I would be first in line !
Speak to your/his Dr about testing and dosage to maintain a health Vit D level.
Beware of claims that "cure"
I have PPMS also and I would be behind you in line if Vit D3 helped with those symptoms. My pain is all day and all night.
I’m not tying to hijack thread but Cutefreckles72 and starlight5 i have rrms but to my knowledge I’ve never had spasisity until perhaps this week.
Anyway, I’ve always been told ms doesn’t cause the pain in the body but the response to ms issues does (if this makes sense). For example spasisity causing your muscles to spasm and be tight is freaking painful- I feel like I was in a car wreck daily…. I think 🤔 everyone on this tread would argue MS causes pain; but the pain is due to what ms did to our bodies and they only have mitigation for pain.
It frustrates me to be told pain or certain kinds of pain “is not ms” but I don’t get how it’s not if ms caused the issues to create the pain???
So my long winded question- how do you manage pain? Do you do anything besides take drugs?
I so understand your frustration! MS causes the damage that causes the pain, it causes damage to the myelin which results in nerve pain or loss of function or... Some pain may be caused when we overcompensate with XXX muscles for the weakness ms caused ZZZ muscles, but isn't ms still ultimately the cause of that kind of pain too?
Anyway, I am sorry you are experiencing spasticity. As much as possible, keep stretching! keep moving! Physical therapy can be helpful. Many find meditation helpful. Have you tried icing or heat?
I experience spasticity in two ways,
1) It is a constant tightness from lower back to toes.
2) It is a spasm that locks me in place until it resolves and then I can move again.
Over the past 7 years I was prescribed baclofen, tizanidine, lyrica, flexeril, valium, cymbalta, gabapentin for spasticity and neuropathy pain. None made any difference at all.
After a badly sprained ankle I was given tramadol which I found helps with both spasticity and neuropathy pain!
I take it as needed, usually 100-200mg a day. Many here will warn against it as it can be addictive but I have not found that to be a problem and I was thrilled to finally find something that actually takes the edge off.
It may not be a muscle relaxer but it masks the pain. Less pain means I can get up and do small tasks which keeps me moving and that helps take my mind off the pain.
I found cbd/thc helps somewhat with spasticity but does not help with neuropathy and I dislike the "high".
Simple icing is a great help for my lower back and hip pain. I just ordered new large ice packs that are awesome.
Sorry for my long winded response! Hijacking is always encouraged!
I sleep with the flexi cold packs in the summer; the large are amazing and flexible- bought mine on Amazon!!!!
Agree 💯💯💯💯💯💯💯💯 with your response on the ms not causing the pain but it is the root of all that basically ails me! 😂
I do an xl weighted massaging heating pad (Calming Heat XXL-Wide Massaging... amazon.com/dp/B085QKT9J2?re... lately that helps take the edge off and o can move around. I’ve been needing to get back to working out/stretching but not there yet - need to loss my covid weight gain….
baclofen - I just started on since Friday I’m not waking up like absolute roadkill but still run over….
tramadol- I’ve had post surgeries but I dunno the doses but it put me to sleep - you could set a timer based on when I took it to when I was out. But I dunno what dose I was in those times. 😂
I dunno about you all but there are times where I don’t want to hear it’s not MS but rather ITS NOT MS but as MS caused these things and we’ve heard from most of our patients this is what we can do to help you and/or you help yourself. Basically I don’t need the medical training I want how can I live my life fully and enjoy my young kids without sleeping for two days due to exhaustion cause I opted to play with them and ignore the pain that’s gonna come back and kick my butt?!?!? 🙊🙉🙈
Thanks for that link to the massaging heating pad, it looks awesome. I'm more of an icing person but I am saving the link. I hope you have relief with baclofen. It seems to be the "starter" med for ms spasticity.
Luckily I don't feel drugged or sleepy with tramadol. I need it to start my morning, so I can move! Then I can take more if needed during the day. I really dislike being on a med I have to take daily, I prefer to have something that I can take as needed.
I’m with you on the take as needed- I always preferred that route. Sadly once diagnosed with ms my occasional drug turned into a twice a day regimen where if something is missed I most certainly know it.
You are welcome on the link. I’m finding the heat for my back and massaging has been helpful lately and when it’s warmer weather spring/summer into fall I have to sleep with the large ice pack and change it when I wake up in the middle of the night so it’ll be interesting to see what happens this spring.
Lucky 🍀 you on no side effects and sleepiness with Tramadol. 🙌🏻
Good to know on baclofen being a starter drug on spasisity- my PCP prescribed as she said she’s seen neurologist prescribe it for others with pain like mine. Guess we will see how much it helps…🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻
Glad your PCP was willing to prescribe it. It was the first drug offered to me by neuro years ago for spasticity tightness, compared to what that tightness is now, it's almost funny that I thought I needed it then....
Hi JMWCO I'm in a lot of pain today so following this thread. Right now i took 600mg ibuprophen but that is not a long term solution. I have a yoga class in about an hour so hoping that helps. Can't come soon enough. I am a wimp about pain.
I guess it depends on the type of pain- splinter wimp; broken things eh.
Persistent pain I can ignore but makes me cranky and intermittent drives me bonkers cause I never know when it’s coming. 😂
I hope the yoga session helps! I can’t take ibuprofen due to my NSAID but I can do Tylenol
I hope your yoga class brings you some relief🙏👍 I doubt you are a wimp about pain....
I noticed you are on ampyra, did/do you notice a difference since starting it?
starlight5 thanks for your confidence in me. unfortunately my yoga class was cancelled however ampyra definitely makes a big difference for me. i'm like a before and after picture. before i take it in the morning ridiculously stiff, think tin man on the wizard of oz with a walker. after about an hour i am somewhat normal in walking (my baseline) which is wall cruising like a toddler.
I'm glad ampyra helps you so much. It is the morning tramadol that has that affect on me, the tin man before and after the oil can!
I wish I saw such a noticeable improvement with ampyra as you do. When I first started I thought it helped a little with all symptoms, not just walking. I recently went a couple months without to see if it was the cause of frequent uti's, it wasn't. But I haven't really noticed much difference since I started up again.
I use a walker most of the time but I still do the wall cruising too. My walls need to washed again, my hands leave a trail!
I get it! Ampyra helps with my hand too. for the walls we used a white vinegar solution and a scrubby sponge. now i use my elbow if i can and wash my hands more. Have a good one.
I don't know about anyone else But my MS causes me pain all day and all night. I try to manage the pain by taking Gabapentin and Tizanidine at night. But in the morning, I still deal with stiffness, tingling and spasticity. The pain never ends for me and I have PPMS.
😭 the no relief at all sounds horrible 😳
It is horrible. I hate it but I deal with it and keep moving. 👍
I'm so sorry you have constant pain, that must be awful. Why only Gab and Tiz at night? Don't you take anything during the day?
I'm always aware of some discomfort but if there's no neuropathy and I'm sitting perfectly still, I can almost pretend that things are normal, until I move and feel the constant numbness.
I am on 5000 iu of D3 & it doesn't take any symptoms away but my vit D3 level was low which is why my Dr put me on it. There isn't anything that can cure MS yet, just a lot that will allow the progression.
I take 4,000 ius all yr round & my blood work is checked 2 times a yr.
I dont think it helps any symptoms however I was told by my ms Dr that it is very important to take vitamin d. I was told to take 2000 but I've been taking 5000 every other day on my own to keep my levels up since they were always on very low end prior.
No! Vitamin D3 is not a treatment for MS symptoms. But it is very important to have adequate Vit D3 intake to avoid deficiency. This usually requires supplements. Most everyone can benefit from 2000 IU (International Units) per day. Most of us take quite a bit more than that. Please consult a physician about laboratory testing and dosages.
Listen to BettysMom. That's solid advice.
I have ppms, my Dr. stepped up D3 to 4000 per day. No change but I still feel very well 😊. I hope the best to all
It will not make symptoms go away but can slow down progression.Since keeping my vitamin D3 I haven't gotten an MS attack and I'm progressive MS wheelchair bound and fighting not to be home bound.
For me it has worked better then any DMT I've tried.
I try to keep my vitamin d3 as close to 100 as possible. Under 40 is an automatic MS attack for me.
I have to take 15k IU in the winter. In the summer only 5k IU
Definitely have seasonal issues. MS attacks have always been in the winter.
palomino27 do you think the drop in vitamin d is a trigger for relapse?
What DMT are you in if any?
Yes, for me it is anytime I'm under 40 vit d3.
I'm on Copaxone. My MS Dr told me Copaxone has been shown to "help" for progressive MS in males.
Honestly, the DMTs I've tried haven't worked for me. I do Copaxone also cause I have no side effects from it.
Apparently now my Dr says the last choice would be Ocrevus I think, but I had a friend who didn't do well on it so I've been reluctant to try it....
I’m on o, until recently I haven’t had issues but the past month have been wicked! So 🤞🏻This weeks Neuro visit is good.
It’s good to know on your B; I keep me up and my tested levels tend to fall in the low end if normal. So perhaps I need to add a third D pill to my night time dose 🧐 sometimes as much as we are all uniquely different the perspectives of others is good considerations.
I have a friend on copax and he won’t change cause it’s helped but not perfect. My clinic told me the older interferons can be good for some abs stable but the newer ones slow progression a lot more clinically- there are plenty of MS centerS/MSAA that compare the efficacy of the DMTS especially NOW some of us have more time to read and catch up! 🙊🙉🙈
I know my Vit D and B12 levels were very low when first diagnosed.
I have read many posts where Pwms discover during or after a relapse that their Vit D level is low so I too believe a low level may trigger a relapse.
Thanks for the reminder
Yeah people with low vitd3 levels have been linked to worse Covid outcomes too...My MS Dr thinks I take to much vitD3. Told her I'd rather be to high then to low cause the consequences of to low can be so devastating. Plus, the side effects of to high vitd3 can be counteracted with vitK2
My MS Dr checks vitB12 levels too. I haven't had a problem with that one.
Absolutely NOT. And no doctor will tell you anything else. But with that being said, surely we all should keep good general health. Good nutrition, and some vitamins supliments will help your body and mind to be healthy, to live better with this awful disease.
I take triflex two caplets 2000UI in am and two vitd 1000ui at night. And have done so for 2 years all year round.
I used to take 300UI at night just vit d but when triflex added d3 I changed my pills.
My levels get checked twice a year and the research (look online/talk to dr) is that low levels can be a factor in worsening symptoms.
Not a cure
Ms - doesn’t have a cure- just mitigation strategies- Mediterranean diet, exercise (however you can- water is good) , take a DMT, vitamins D, b, (regular doses that help anyone with our without MS), energy conservation techniques, live your live the best you can and modify as needed. 🍀
Most, if not all, of people with MS take D3. I had to cut back as one of my blood tests showed it was too high. So you can't just cram a ton of D3 in. It can't be high in your system.
I've been taking 5,000IU of vitamin D3 daily for many years now. I have SPMS and can't say that the D3 has helped with anything but I like to think that I'd be worse if I hadn't been taking it.
From what I hear, vit D3 doesn't do anything for MS Symptoms, Although it may prevent getting MS. But vit D3 might be a good idea to take. You may want to have your vit D3 levels checked to see if it's low. You could then take the recommended amount.
canimambo there is a lot of good advice here and other posts related to Vitamin D. My experience is sticking close to the lab work. Part of how I was diagnosed was when my blood level was 17. My doc said it should be around 55. Functional medicine docs say it should be closer to 100. so my answer is whatever dose gets him to the ideal blood levels.
I was told by neurologist to stop taking D3 supplements when blood-work showed my:Vitamin D levels had hit 97. Too much can leach the calcium out of your bones, cause stomach problems, etc. Please make sure if you do this your doctor does blood tests.
She emailed me STOP! after I emailed her my blood test vd level, ordered by a different doctor.
Your dr did? Are they in the same clinic or different?
I think if one dr ran tests and they can see them gray and if they can’t then you should be able to share….I don’t get why dr would say “STOP”🤔
many of us were tested with very low vitamin D when we were first diagnosed with MS.
When first taking Vitamin D supplement to get it back to normal range, one might feel significantly better, like anybody would (with or without MS).
I would follow Dr recommendations to find the right level of Vitamin D supplement and get it tested along with other regular blood tests done with MS. Too little is a problem, too much is also a problem. Don't auto-medicate on Vitamin D!
My primary GP ran the tests. She had asked me to ask him to check the vitamin d levels. They were not in the same facility, they don't know each other.
I myself decided to take d supplements because i rarely go out, i hate being in the sun, i'm a night owl.
Anc of course scotland famous for grey skies affecting vit d levels and presence of ms in population,
but she saw the level was way too high, i already take a multivitamin for 50+ that includes vit. D. Google the side effects of too much vitamin d and you'll see why she emailed me that. i had a 97 level (US numbers). 100 or over can be very dangerous.
Here:
Hey, canimambo
it seems like most responses have concentrated on VitD3. I can relate to every single symptom listed. I hope he has found help to deal with his symptoms and it is so good of you to help in the search.
After trying and failing with baclofen, tizanidine, lyrica, valium, cymbalta, gabapentin, I now take tramadol, ampyra, and just started a daily low dose antibiotic for recurrent uti's, 7 in 2021😲. I also have a script for oxybutin but have had such an improvement with the antibiotic that I haven't started it yet. I am also on ocrevus.
Keep trying until he finds something that helps relieve symptoms. It took over 5 years trying all the drugs mentioned above before I found tramadol helps best. Good luck to you both.
starlight5 …before you start oxybutin, look up the higher risk of dementia in anti-cholinergic drugs so you are making an informed choice. I took oxybutin for awhile but the side effects were too much so I switched to vesicare which worked great. But I stopped it when I read about the higher risk of dementia in anti-cholinergic drugs.
I started with oxybutynin and then to vesicare too. I took vesicare for a couple months until that study came out and my urologist said that he wanted me off of it. Since I was still young then (ha! Under 40!), he was concerned with long term use and memory. He put me on Myrbetriq, which works soooo much better for me anyway, so I didn't mind the change at all!
Thank you Raingrrl and CV97 for your responseThe risk of anti-cholinergics linked to dementia is the main reason why I have not started oxybutynin!
I requested myrbetric instead but insurance would not cover. In a month or so I will say that oxybutynin is not working well or too many side effects.. and then have dr submit a request for myretric 🤞
Even with taking the low dose antibiotic for about 3 weeks I feel I have a uti again 😥 incontinent and peeing 2-4 times a night 😥😥
I can’t afford Myrbetriq. My insurance doesn’t cover it and it’s price is ridiculous. I’m looking into how I can get some of the cost mitigated. In the meantime, I have my second UTI in 4 1/2 months. I blame Ocrevus because it has weakened my immune system considerably.
The manufacturer has an assistance program if you're eligible.
myrbetriq.com/savings-and-s...
Thanks. I knew about the program. The problem is that my insurance doesn’t cover it and the assistance is max of $70 a month for a drug with a price tag of $480. Not feasible for me. I even checked GoodRx and they didn’t have a significantly better price in my area. It’s a catch-22, I would have to pay a lot more for my drug insurance to get one that covers Myrbetriq. One of my doctors might try to appeal to the insurance company but says that they have only been successful some of the time.
Did you see this part at the very bottom of that link?
No! Missed that!Thank you! I blame lack of sleep this past week for missing that. I’ll look at it when I’m not so sleepy.
Encouraging folks to stay on their MS treatment
MS Treatment Satisfaction 
