MS Medication Selection

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M5ms
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MS Medication Selection

Post by M5ms »

Hello all,

I am writing this on behalf of my mother (49y.o) who is "diagnosed" with RRMS since April 2014. How it all started: for about a week in February 2014, she had extreme ringing/roaring in the ears yet at the same time sensitivity to sound; lightheadedness and extreme vertigo; headaches; fatigue; brain fog. Her PCP ordered MRIs of the brain and spinal cord which revealed white matter lesions in the brain, warranting a visit to a neurologist. The neuro (who sounds like an angel compared to the stories we've read on forums about heartless, impatient neuros) conducted more tests to rule out things like Lupus,Lyme disease, etc. and further concluded MS. To help with brain fog, neuro prescribed Nuvigil (which Mom took for about 1 month due to insurance problems and was thus prescribed Provigil - which isn't nearly as great as Nuvigil). At this point, there were two options: begin treatment with an MS medication (Gilenya is what doc recommended); or wait and see how it progresses. We chose the latter (fearful of the chemo-based MS drugs), and researched quite a bit. After stumbling upon the fact that vitamin b12 deficiency causes lesions in the brain as well, coupled with the symptoms my mom was experiencing, our wishful thinking led to a prescription for IM cyanocobalamin. We also had read about LDN and the success stories with that, so she was prescribed 1.5mg LDN (with Avicell filler). Her neuro actually was against LDN (but we obviously convinced him) and was quite a bit mad that we were not yet wanting to start her on MS drugs. He instructed that, at the 6month mark (this October), another MRI will be taken, and from then on she should begin with an MS drug.

So currently, she is taking vit b12 (1000 mcg once every week) along with LDN nightly. Also, after about a month of taking Provigil, she was experiencing insomnia (common side effect), and was prescribed Ambien, which she takes nightly as needed (basically every night with rare exceptions). So far, the Vitamin B12 route hasn't proved very effective unfortunately. And with taking LDN, from what I've read, improvement doesn't occur until after about a year, which I think could be too damaging if it's indeed not doing anything for her. LDN also seems to have given her chest pain.

Recently, mom's been experiencing much leg pain that first began sporadic and not as painful, but has substantially increased in pain and become constant. We are concerned that this could be the precursor to losing the ability to walk? She has also been experiencing severe flushing in the face and neck, to where her skin becomes red as a tomato and is very hot to the touch. We have no idea if that's a possible side effect or if it's MS.

Thus we are at crossroads and would like some insight and opinion on what would be the wisest decision, because from the looks of it, her RRMS is progressing at a fast rate. Should my mother begin an MS medication to prevent any further damage, specifically losing the ability to walk? If so, would continuing LDN do anything? What medication is best, with the least side effects?

OR should she wait a little longer to fully experience the effectiveness of LDN (if there is any at all)? Would that be too risky?

My mother is scheduled for a second opinion in November with an MS specialist.

Thank you all in advance!
Kronk
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Re: MS Medication Selection

Post by Kronk »

M5ms wrote: Thus we are at crossroads and would like some insight and opinion on what would be the wisest decision, because from the looks of it, her RRMS is progressing at a fast rate. Should my mother begin an MS medication to prevent any further damage, specifically losing the ability to walk? If so, would continuing LDN do anything? What medication is best, with the least side effects?

OR should she wait a little longer to fully experience the effectiveness of LDN (if there is any at all)? Would that be too risky?
LDN has primarily anecdotal evidence behind it, basically the only scientific studies completed were on PPMS and it showed a reduction in spasticity and that was pretty much it. I currently take 4.5mg of LDN nightly and I am not convinced it is helping... there is no way I would rely on it as my only medication. But it is cheap and side effect free so I keep taking it. I wonder if it only benefits those who do get the side effects?

Choosing the "best" medication is a tough choice, many on this board (even some non-conpiracy theorists) would state no medication is the way to go. In my opinion the best medication is the one that offers the highest efficacy with the lowest side effects. I would be on Tecifidera but my insurance will not cover it so I do Copaxone. I don't like the idea of suppressing the immune system with Rebif, Avonex or Beta Seron. I would consider Fingolimod/ Gilenya and my Neuro is suggesting that as the efficacy is higher. But there is the potential for more side effects as well. It's a balancing act.

My current regimen is a bit ridiculous but I have a young family to support so I must do everything in my power to stay healthy. I do Swank Diet, Gym 4x a week, LDN, Copaxone, Vit D and a smattering of other supplements. When i was first diagnosed I was hit very hard the first 6 months, then it calmed a bit. I have had 2 relapses in the 18months since starting my regimen both VERY minor sensory skin issues vs. the total loss of function I had for the first several attacks.

I wish you and your Mom the best of luck.
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NHE
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Re: MS Medication Selection

Post by NHE »

H M5ms,
Has your mother had her vitamin D3 levels checked? If it's much less than 110 nmol/L (44.1 ng/mL), then bumping it up might be helpful. Note that vitamin D3 supplementation requires added magnesium so consider adding 200-300 mg of magnesium per day as well as the vitamin D3.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the MS relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.


Note: 110 nmol/L = 44.1 ng/mL. Divide by 2.496 to convert nmol/L to ng/mL.
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Scott1
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Re: MS Medication Selection

Post by Scott1 »

The B12 is probably causing the red face see - http://www.mayoclinic.org/drugs-supplem ... b-20060243

Have a good look around this site for ideas.

Regards
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CureOrBust
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Re: MS Medication Selection

Post by CureOrBust »

everyone will have a different treatment that works for them specifically. The following PDF gives general comparison of the main stream (ie nuero prescribed and research/trial backed treatments) http://cdn2.hubspot.net/hub/345863/file ... 7429355152
For things a little more experimental, you have a lot of reading ahead of you. I personally use Inosine and Lipitor (a Statin) and Gylenya as my main treatments. I tried LDN a few years back, and didn't get the lucid dreaming, but did find it actually caused me extra stiffness and therefore disability. If your mother is ready to take a risk and treat it aggressively, maybe look into Campath, HSCT or CCSVI; but remember, everyone could/will give you a different list.
want2bike
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Re: MS Medication Selection

Post by want2bike »

If you take a medication I believe LDN is the best with no side effects. The vitamin D level should be as close to 100ng/ml as you can get it. Ms drugs will not slow the progression of the disease. They are used to cover up symptoms and have bad side effects in some people. A raw food plant based diet is suggested by many with MS. This will give the body the vitamins and minerals it needs to fight disease. Ms is caused by various toxins in the body and in my case it was my teeth. Too much mercury and root canals. If your mother has a lot of amalgams and root canals might have her checked out by a mercury free dentist. They have instruments which can measure the amount of mercury vapors in her mouth. Get all the information and you may be able to help your mother. Dr. Bergman does a good job of explaining it.

http://www.naturalnews.com/027345_Vitam ... e_sun.html





http://www.nytimes.com/2012/07/18/healt ... .html?_r=3&
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Re: MS Medication Selection

Post by vesta »

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY

2. OPTIMAL NUTRITION AND SUPPLEMENTS

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation (Terry Wahls uses), osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require a series of NUCCA chiropractic adjustments to relieve a skeletal obstruction, surgery or ANGIOPLASTY (see CCSVI thread).

4. FIFTEEN MINUTES OF SUNLIGHT DAILY or UV lamp to strengthen the endothelium and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY

I was pleased to see the revised choices leaflets from MS-UK (The British MS Society) which are both open minded and informative. See MS-UK Choices Leaflet: Complementary and Other Therapies, updated Nov 2013.

Better yet <www.ms-uk.org/choicesppms> updated August 2014

MS Cure Enigmas.net
Last edited by vesta on Wed Aug 13, 2014 12:58 pm, edited 2 times in total.
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HarryZ
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Re: MS Medication Selection

Post by HarryZ »

Sorry to hear about the diagnosis of your mom and how fast the MS appears to be progressing. Everyone is different when it comes to this disease and trying to determine which way to go is a daunting task.

My wife had MS for 36 years before she passed away in 2007. She was diagnosed back in 1971 when there was really nothing to take to treat the disease. After the initial severe attack which put her in bed for 2 weeks, 95% of the symptoms went away and she went 20 years without progression. Then the MS started to slowly progress.

She chose not to take any of the approved MS drugs at the time and her neuro told her some 5 years later not to take them because they wouldn't do much good. In 2001 she started taking the alternative drug Prokarin which did help relieve a number of her symptoms.

There are other drugs that have been developed since this time but most are immune system altering medications that can cause a lot of nasty side effects. While some MS patients derive some benefit from them, many do not.

As you have read from other posts the results from the different remedies people try are all over the map. What works for one person does absolutely nothing for the next. That's what makes the disease so frustrating.

Regardless of what medication, if any, your mother decides to try, I believe that it is important that your mother looks after her general health as best she can. That means a proper diet, proper exercise and good rest.

At the same time beware of comments from some who say they know what causes MS. Researchers have been studying MS for over 70 years now and they still can't determine what mechanism actually causes the disease. It may be one cause or several causes...they just don't know. Yet you will read that some people say they know for sure what causes MS.

Whatever decision your mom makes, ensure that it is an informed one and that she is not overly pressured into a choice. And that decision will be very difficult due to the total unpredictability of MS. The best of luck.
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lyndacarol
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Re: MS Medication Selection

Post by lyndacarol »

M5ms wrote:I am writing this on behalf of my mother (49y.o) ...

After stumbling upon the fact that vitamin b12 deficiency causes lesions in the brain as well, coupled with the symptoms my mom was experiencing, our wishful thinking led to a prescription for IM cyanocobalamin. We also had read about LDN and the success stories with that, so she was prescribed 1.5mg LDN (with Avicell filler). Her neuro actually was against LDN (but we obviously convinced him) and was quite a bit mad that we were not yet wanting to start her on MS drugs. He instructed that, at the 6month mark (this October), another MRI will be taken, and from then on she should begin with an MS drug.

So currently, she is taking vit b12 (1000 mcg once every week) along with LDN nightly. Also, after about a month of taking Provigil, she was experiencing insomnia (common side effect), and was prescribed Ambien, which she takes nightly as needed (basically every night with rare exceptions). So far, the Vitamin B12 route hasn't proved very effective unfortunately.
Welcome to ThisIsMS, M5ms. It's true: everyone has a different idea about this disease, whose cause is unknown.

My current suspicions lie with vitamin B12 deficiency. Your mother's symptoms are consistent with a B12 deficiency, and one would expect her therapeutic trial with cobalamin injections to effect a change if that were her problem. But… On page 223 of the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O., is the statement “It is important to remember that 80% of the injected cyanocobalamin dose is excreted within the first 24 hours.”

This would seem to support a change to the methylcobalamin form, a more bioavailable form. However, in the US, only cyanocobalamin is given in doctors' offices. Methylcobalamin is available in sublingual tablets (1000-5000 mcg) OTC; if her doctor will write the prescription, methylcobalamin injections, which can be self-administered subcutaneously as some diabetics use insulin, can be obtained from a compounding pharmacy.

A vitamin B12 deficiency can develop in any person at any age; one of the groups at higher risk is those people 50 and over.

The HoloTranscobalamin (HoloTc) blood test is used to monitor improvements after therapy for a deficiency.

Along with everyone else here, I wish the best to you and your mother.
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Re: MS Medication Selection

Post by M5ms »

I am so grateful for all your well-informed replies. Now something we have been a little concerned about from the get-go: how exactly is MS diagnosed? From my understanding there is no definitive diagnosis, simply ruling out of other potential disease. One thing I've read about was the McDonald Diagnostic Criteria, of which my mother has 2 out of the 3. Contrastingly, the neuro doesn't believe in the McDonald criteria.

I did fail to mention, neuro wanted her to do a spinal tap and upon reading the horror stories of spinal tap aftermath, mom didn't want to do it - although now, she is willing to. Would that be a definitive diagnosis/ruling out? And how about evoked potentials? What if all this really is a mere imbalance of Vit B12, D3, and potassium? What's the possibility of her taking MS meds to no avail, simply because it was all a vitamin/mineral deficiency? This illness really is pure frustration, just as you all have said.

From other posts I have read, it seems that what leads to a diagnosis of MS for many people was their loss of vision. That symptom tended to be the most common, yet my mother does not have that. Is it because symptoms vary so much?

Also, what consists of an actual attack? We consider the initial vertigo/roaring in the ears back in February the first attack obviously. However, would she be undergoing a second attack now, with the addition of leg pain? Or is a second attack basically bed-ridden? She also seems to be experiencing MS Hug, so I'm wondering if that is the second attack?

Another piece of info: she does not have spinal lesions.

Thank you all :)
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Re: MS Medication Selection

Post by vesta »

The evoked potentials isn't invasive at all, just flashing lights eye exam, no problem. I'll never do another spinal tap, one was enough.

Best regards, Vesta
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lyndacarol
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Re: MS Medication Selection

Post by lyndacarol »

Your understanding is correct: "there is no definitive diagnosis" for MS. MS is a diagnosis of exclusion.Generally, it is not easy or quick to diagnose. Long ago before expensive tests existed to diagnose MS, doctors diagnosed MS on the basis of symptoms and if symptoms temporarily worsened when the patient sat in a hot bath for a while. After excluding the other likely conditions and evaluating the symptoms, doctors usually get down to the diagnosis of MS.

The University of Chicago suggests the following for testing and elimination (your mother's neuro is good to have begun already with some of these – Lyme disease, etc.):

http://peripheralneuropathycenter.uchic ... #bloodtest\
Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Gluten sensitivity is a problem for many people; it can cause neurological symptoms.)
Lyme disease
HIV/AIDS
Hepatitis C and B
In my case, my first three MRIs were "normal" (lesions were observed in my fourth), my EMG was also "normal," as was evoked potentials testing. I never had a loss of vision or any abnormality of vision. I did not have a spinal tap. There is no definitive test – not even a spinal tap – for diagnosing MS.

Every case of MS has its own unique set of symptoms. Yes, the vertigo and tinnitus back in February was probably the first attack; the second could be either the leg pain or her MS Hug; being bedridden could be a second attack, but would be highly unusual, in my opinion. (I believe that being bedridden is about #9 on the Kurtzke Extended Disability Status Scale, a.k.a. EDSS.) I think such fast progression to being bedridden is more likely part of PPMS (Primary Progressive MS). Her physician would be best qualified to determine what constitutes an actual attack in her case; my understanding is that it would be a new, pronounced symptom lasting more than a few days.

You are absolutely correct: " This illness really is pure frustration."

I still encourage you to test thoroughly for a possible B12 deficiency – perhaps with a second opinion doctor in November. I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab): "Everything You Want Your Doctor to Know about Vitamin B12"



@1:23 "The neurological manifestations well precede the hematological manifestations."
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HarryZ
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Re: MS Medication Selection

Post by HarryZ »

Out of curiosity, is your mother being seen by a neurologist at a MS Clinic? These clinics have a far better record of diagnosing MS than do neuros who practice outside of them. They see many variations of the disease and can rule out other similar diseases.

While all MS Clinics vary in their expertise, they are far better to go to try and get a diagnosis. And like the others have said, MS is not an easy disease to diagnose so you don't want to leave it to someone who may not be up on the latest info.
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NHE
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Re: MS Medication Selection

Post by NHE »

M5ms wrote:So currently, she is taking vit b12 (1000 mcg once every week) along with LDN nightly. Also, after about a month of taking Provigil, she was experiencing insomnia (common side effect), and was prescribed Ambien, which she takes nightly as needed (basically every night with rare exceptions). So far, the Vitamin B12 route hasn't proved very effective unfortunately. And with taking LDN, from what I've read, improvement doesn't occur until after about a year, which I think could be too damaging if it's indeed not doing anything for her. LDN also seems to have given her chest pain.
Hi M5ms,
I think it's important to get vitamin B12 levels tested before beginning a supplement regimen. Things to get checked are serum B12, homocysteine, serum (or urinary) methylmalonic acid and red blood cell (RBC) folate. Since your mother has already started taking B12, she should stop for a week prior to the test (also stop any folate or folic acid supplements). In addition, the tests should be done after a 12 hour fast (water only). Note that many labs in the US use a very low value for the bottom of their "normal" range, e.g., ~ 200 pg/mL. However, Japan uses a range of 500-1200 pg/mL and this is preferred as deficiency symptoms can manifest in the 200-400 range.
M5ms
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Re: MS Medication Selection

Post by M5ms »

@HarryZ thank you for your reply! Actually, her current neuro is not an MS specialist. I think he might actually have only a small volume of MS patients which doesn't sound too good. But we do have a second opinion scheduled with an MS specialist and are considering traveling to Rochester for Mayo Clinic's MS center. However one thing I did read somewhere was that MS specialists tend to push for a certain drug that they have been sponsored by. Is that true? How exactly would we know to steer clear if a doc insists on a medication?
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