This Is MS Multiple Sclerosis Knowledge & Support Community

Looking for some advice on the best steps moving forward.

I’m a 45/f with a hx of lab diagnosed celiac disease. I had Covid in September.

Oct- developed R-sided tongue numbess
Nov- developed handwriting changes/difficulty with handwriting
Dec/Jan- developed trouble staying balanced- walking into doorways, tipping over on stairs
Jan- developed zing going down spine with bending head
Feb- developed intention tremor, subtle R leg weakness
Feb MRIs- cervical spine and brain negative for lesions
March spinal tap- 10 oligoclonal bands, 0 in serum, + csf igg index.
Neuro had previously said that csf results would not impact treatment and we would have a wait and see approach, with another MRI at future date. I understand differential dx it be ms, celiac ataxia, or Post-covid issue.
Question- what should I be doing during “wait and see” to best protect my neurohealth and stay sane with all these symptoms????

Hi,
Do you take any medications or follow any lifestyle protocols at this stage?

Regards,

I just started Vit D 50000iu weekly. Have been on a gf diet for years, but now have a renewed scrutiny of what I’m eating. No other meds, supplements, or lifestyle protocols yet. Suggestions?

Schoolhouse wrote: ↑Sun Mar 27, 2022 11:49 pm I just started Vit D 50000iu weekly. Have been on a gf diet for years, but now have a renewed scrutiny of what I’m eating. No other meds, supplements, or lifestyle protocols yet. Suggestions?

Welcome to ThisIsMS. Regarding the high dose vitamin D protocol, what was your D3 level? In addition, make certain that you’re taking D3, cholecalciferol, not D2, ergocalciferol. D2 doesn’t work well. Please see the following post.

viewtopic.php?p=245838#p245838

Thanks for the link and resources. Vit D was originally 14, So far has come up to 21. It is D3.

It always feels better when you’ve a list of things to do while you wait, doesn’t it? I’m just an expert at having MS, not in any way a medical expert but I’d recommend
1. Take magnesium (glycinate used to be the best but better may have come along) w that vitamin d (search this site for reason/dosing)
2. Avoid stress as much as possible
3. Try to get great sleep (without Benadryl or other anti-cholinergics/brain-eaters)
4. If safe, try to do most of your usual activities. “Use it or lose it” is real for both body and mind.
5. Eat at least one healthy meal a day (except Friyay) and pay attention to how you feel in relation to what you eat. If something makes you feel better, do some research on the top 3 nutrients in the food and see if taking those nutrients in supplement form (test one at a time) makes you feel better too. Then you can focus on the helpful nutrient in your diet/supplement regimen. It sounds crazy but it really works for me. If you really want to spend some time there, look into co-factors too.
6. Research, if that’s your cup of tea…and please let us know how things go. I’ve a massive oligoclonal band collection myself and I’m super curious about any connection between covid and OCBs. I’m not really sure they are as doom and gloom as the professionals seem to think. Were you vaccinated? (Am I allowed to ask that here? Don’t answer if it makes you uncomfortable!)
7. Ignore some or all of my suggestions and come up with your own things you want to try to optimize your health. Half the value of doing things while you wait is just the peace you feel knowing you are doing something. I think we can use placebo effect to our benefit as well.

Be well

Thanks anonymoose- I appreciate your list and I agree that’s its helpful to focus on strategies that may be beneficial and keep you busy while you wait to get better or worse. I have been thinking about Mag and have taken it before. Will jump on that. I like your suggestion to pay attention to how healthy meals make you feel. I was vaccinated pretty early bc I work in healthcare. I was 10 months out but not yet eligible for the booster when I got covid. I’ve seen two neuros who both tell me these are not the typical post Covid symptoms, but I wonder about its connection, if at all.

I wish Jimmylegs would chime in with an expert list of nutrient levels to test.

I’ve seen several accounts of people having neuro complications post-covid or post-vaccine. They may not be common but you’re not alone.

Schoolhouse wrote: ↑Mon Mar 28, 2022 8:08 am Thanks for the link and resources. Vit D was originally 14, So far has come up to 21. It is D3.

My D3 had gotten down to 8.5 ng/mL last September. I did 50,000 IU/wk of D3 for 10 weeks. D3 came up to 47 ng/mL. I then took 1000 IU/day as a maintenance dose for 3 months. My D3 fell down to 27 ng/mL. I bumped my maintenance dose up to 5000IU/day. It’s been just over a month so I need to inquire about a retest to see where things are now.

hi sry i'm late, will chime in shortly

I'd suggest

1. do a self-pay visual evoked potential (no referral needed I found); results will help the diagnosis.

2. start DMTs if you can get hold of some somehow; big benefit of starting early if you have MS, low side effect risk, can just stop later if it's not MS.
viewtopic.php?t=32171

Best wishes

hi sorry i've been off on a lot of other tangents lately. gf diet and covid prompt me to ask, do you have numbers for your zinc status, @Schoolhouse?