New to MS (RRMS)

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New to MS (RRMS)

Postby allyh » Sat Dec 27, 2014 3:05 pm

After a three day hospital stay because the right side of my body went numb from head to toe and lots of tests later, I was diagnosed as RRMS in October.

I did the round of Solu Medrol & was never sicker. A short round of Acthar injections helped me regain feeling everywhere but my extremities. (My left hand & leg joined the party after Solu Medrol.) I did about 2 months of Tecfidera & stopped when the side effects only worsened and the stomach pain & nausea was more than I could handle. They are currently trying to get me started on Plegridy.

I'm feeling worse now than ever and hoping the light at the end of the tunnel is around the corner. Both of my hands are numb & stiff, lots of tingling in both legs (the right side is still worse), dizziness over the last five days, so...very...tired all the time, can't sleep well even though tired, etc...I have looked at all kinds of diets and alternative therapies and so overwhelmed. Previous pages I looked into were so against all meds & negative toward anyone using them so I finally got so disheartened I stopped those sights and like the diversity here.

I'm 39, wife, mother of 2 (5&8) and have so much to fight for...
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Re: New to MS (RRMS)

Postby jimmylegs » Sat Dec 27, 2014 4:03 pm

welcome ally :) lots of folks here working to correct the known nutritional issues for ms patients while concurrently investigating all kinds of meds and procedures - or not :) lots of options you'll find something that suits your present frame of mind. early days are overwhelming for sure. whatever you choose, make sure it makes sense for YOU. you can pick and choose the bits that seem the most logical. and if you have any particular questions feel free - people will chime in :)
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Re: New to MS (RRMS)

Postby lyndacarol » Sat Dec 27, 2014 5:49 pm

Welcome to ThisIsMS, allyh.

Thanks for sharing your personal information, "39, wife, mother of 2 (5 & 8 )." I am curious if body numbness had been your only symptom, when you were diagnosed in October,

As NHE posted to the Natural Approach forum about prednisolone, a.k.a. Solu-Medrol (natural-approach-f27/topic24857-15.html#p226723):

Decreased vitamin B12 and folate levels in cerebrospinal fluid and serum of multiple sclerosis patients after high-dose intravenous methylprednisolone.
J Neurol. 1993 May;240(5):305-8. (http://www.ncbi.nlm.nih.gov/pubmed/8326337)

Twenty-one patients (15 women, 6 men) with definite multiple sclerosis (MS) were treated with 1000 mg intravenous methylprednisolone-succinate (MP) daily for 10 days. Before MP treatment there was a negative correlation (r = 0.59, P = 0.0084) between serum vitamin B12 and progression rate, defined as the ratio of the score on Kurtzke's Expanded Disability Status Scale and disease duration. A significant decrease was demonstrated in the cerebrospinal fluid (CSF) and serum levels of folate and in the CSF level of vitamin B12 after MP treatment. The decrease in serum B12 was not statistically significant. After MP treatment all median levels of vitamin B12 and folate were below the reference medians. We hypothesize that low or reduced vitamin B12/folate levels found in MS patients may be related to previous corticosteroid treatments. Otherwise a more causal relationship between low vitamin B12/folate and MS cannot be excluded. Further studies may be required to clarify the vitamin B12 and folate metabolism in patients with MS.

It seems possible to me that your course of Solu-Medrol could have worsened an already-present low vitamin B12 level. Or perhaps your doctor did order the HoloTranscobalamin (HoloTc) test to determine your B12 status? Your symptoms now (numbness in the hands, tingling in the legs, dizziness, extreme fatigue, insomnia) could be caused by any number of things, including MS, the Tecfidera, a vitamin B12 deficiency, etc.

If stopping Tecfidera improves these symptoms, I would assume that was the cause. If B12 is found to be deficient and raised with B12 (methylcobalamin) injections and then symptoms improve, I would assume that to be the cause. Unfortunately, there is no definitive test to prove that MS is the cause of these symptoms. I agree that the situation is disheartening; we seem to be reduced to "trial-and-error" – we are willing to try what seems logical to each of us.
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Re: New to MS (RRMS)

Postby allyh » Sun Dec 28, 2014 6:43 am

My Vit B12 was low but not enough to cause all the issues..they thought it was that instead of MS but determined it wasn't, but I am on B12 (sublingual) now as well as D. Just started CoQ10, Tumeric, Krill Oil. I finished Solu Medrol in Oct, did Acthar in late Oct. I feel better of the Tecfidera symptoms but the exhaustion & dizziness is worse since stopping it.
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Re: New to MS (RRMS)

Postby jimmylegs » Sun Dec 28, 2014 6:52 am

hi ally, glad to hear they have looked at b12 and vit d. do you have all your nutritional results?
did they test serum magnesium or serum zinc, given their interactions with vit d3? did they run a serum ferritin test?
also may i inquire as to the supplemental forms and doses of b12 and d?
there may be some strategies you could try related to the fatigue - possibly interesting reading here:
general-discussion-f1/topic25661-15.html
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Re: New to MS (RRMS)

Postby Youarethecure » Mon Dec 29, 2014 8:58 am

I HATE steroid treatments it often leaves me feeling worse because of all the stupid side effects.

Seeing that it is relapse remitting, there should be light at the end of the tunnel. Hopefully most of the symptoms can eventually clear up. Just know that it can take a lot of time, or even unfortunately some things could stay and linger.

There are so many things you can do to better your quality of life. Look into exercise, diet, medication, nutrition and lifestyle changes. All these things play parts in making you feel better and stay better. It also will ready your body and your mind for the next attack.

Is there any specific reason you chose Tecfidera over all the other drugs? There are many different DMD's to pick and you should do your research yourself and figure out which one is right for you.... assuming you do want to even do medications.

I personally am on Copaxone. There have been zero side effects other than site reactions for me. It is one of the OG (original gangster lol) drugs that has been around since the beginning. It is the most "mild" drug in my opinion other than it being needles but even that you will get used to.

I hope the best for you,

Chris
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