5 days of IV Steroids: Still no improvement

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Flashover81
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5 days of IV Steroids: Still no improvement

Post by Flashover81 » Sat Feb 21, 2015 8:37 am

Hi, I have a 18 almost 19 year old son diagnosed with MS at the age of 14. He has not had any issues until a week ago Sunday.
Went to the Hospital on Sunday and started the IV Solumedrol. He presented with numbness of the left arm and leg and balance issues "Ataxia". He received 1,000mcg for the 5 days.

Today is Saturday and still no improvement with the symptoms. I have heard a lot of stories about how it worked fast and some not so fast. I am worried that this might be permanent. He is not on any DMD as of yet. Is there anybody that has had a similar experience that can shed some light? I am scared and worried for my son. Thanks.

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lyndacarol
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Re: 5 days of IV Steroids: Still no improvement

Post by lyndacarol » Sat Feb 21, 2015 10:54 am

Flashover81 wrote:Hi, I have a 18 almost 19 year old son diagnosed with MS at the age of 14. He has not had any issues until a week ago Sunday.
Went to the Hospital on Sunday and started the IV Solumedrol. He presented with numbness of the left arm and leg and balance issues "Ataxia". He received 1,000mcg for the 5 days.

Today is Saturday and still no improvement with the symptoms. I have heard a lot of stories about how it worked fast and some not so fast. I am worried that this might be permanent. He is not on any DMD as of yet. Is there anybody that has had a similar experience that can shed some light? I am scared and worried for my son. Thanks.
As a parent myself, I understand your concern for your son.

On two different occasions I have had a course of IV Solu-Medrol in the hospital and had no improvement of my symptoms either time. There are serious side effects to the corticosteroids (e.g., increased risk of diabetes) and I do not intend try them again.

I now believe that my symptoms stem from longtime vitamin B12 deficiency; none of my doctors in the past screened for the possibility; I now fear that my symptoms are irreversible.

Thoroughly examine this website: http://b12awareness.org/

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms: http://b12awareness.org/could-it-be-b12 ... diagnoses/

Any person at any age (even in the teen years) can develop a B12 deficiency. Numbness/tingling in the extremities ("peripheral neuropathy") is the most common symptom of B12 deficiency. Ataxia is also a sign of this deficiency. Your son received an MS diagnosis five years ago; his current issues may be part of that… Or it is possible they are part of a completely different cause. If your son has never been screened for a possible B12 deficiency, this would be a good topic to discuss with his doctor.

The serum B12 test alone is not adequate to find a deficiency – taking a vitamin B supplement before testing will skew the results (also the "serum B12" test measures TOTAL B12 in the bloodstream.); the HoloTranscobalamin, a.k.a. HoloTc, test is more accurate as it measures that part of B12 that can actually make it into the cells.

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Flashover81
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Re: 5 days of IV Steroids: Still no improvement

Post by Flashover81 » Sat Feb 21, 2015 11:07 am

Hi.......My son has been taking B-12 shots for approximately 2 months prior also. Haven't had a b-12 test.

He has been taking protandim, d-3 5,000 iu a day and the b-12 shot 5mg once a week.

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Re: 5 days of IV Steroids: Still no improvement

Post by lyndacarol » Sat Feb 21, 2015 3:21 pm

Flashover81 wrote:Hi.......My son has been taking B-12 shots for approximately 2 months prior also. Haven't had a b-12 test.

He has been taking protandim, d-3 5,000 iu a day and the b-12 shot 5mg once a week.
There are several issues to consider in taking B12 supplementation:

#1 The B12 shots given in a doctor's office in the US are in the form of cyanocobalamin, the cheapest form of B12 and the least bioavailable because it must be decyanated first. Methylcobalamin is more readily absorbed by the body, and this form of B12 must be obtained through a compounding pharmacy.

For some people (but not all), an oral (sublingual tablet) form of methylcobalamin will work; read labels carefully to get methyl rather than cyano.

#2 I do not know the effectiveness of your son's 5 mg B12 injection, once a week. On the basis of my symptoms alone (all test results were normal because I had been taking B Complex for years; however, my MCV was quite high – this can be an indication of a long-term B12 deficiency), my PCP has prescribed daily 1000 µg methylcobalamin subcutaneous injections, which I self inject (with the same kind of syringe that a diabetic would use).

#3 Since your son has been taking B12 shots, I do not believe serum B12 test results would be reliable at this time; but this is something to discuss with your son's doctor. Perhaps the HoloTc test would be appropriate for your son.

#4 If your son's PCP would prefer to refer this to a specialist, ask for a referral to a hematologist.

Since it is estimated that 40% of the American population has a suboptimal level of B12, I think this is an area to be checked out. As I said earlier, your son's symptoms that began a week ago may be a manifestation of MS or they may be a manifestation of a separate condition. In my experience, too often new symptoms after an MS diagnosis are simply chalked up to MS, when it is possible that there could be another cause which could be treated.

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Re: 5 days of IV Steroids: Still no improvement

Post by eric593 » Sat Feb 21, 2015 7:38 pm

IVSM only reduces inflammation and thereby hastens recovery from an exacerbation, it doesn't change where a person would have ended up anyway. It doesn't change the outcome:

http://www.ncbi.nlm.nih.gov/pubmed/15327039

As you can see from this evaluation, not everyone responds to it either (I don't).

But, give it time for healing to occur. Factors associated with recovery include a young age, so your son has that going for him. As lyndacarol indicated, there are some potentially serious side effects from steroid use, so many of us only use them if the relapse really disrupts our functioning, involves a major function that is impaired, or to treat optic neuritis, which their use by IV has been shown to reduce the incidence of another bout of ON. Or we refrain altogether since they don't affect the eventual outcome anyway. I know it's hard psychologically not to do anything when you are in an attack though.

The good news is that despite earlier beliefs, IVSM does not impact bone density, although there are other possible side effects as noted above.

http://www.ncbi.nlm.nih.gov/pubmed/25623251

My only advice is to have patience, have him eat anti-inflammatory foods, and reduce stress. Chances are good that he will recover given the early stage of the disease and his young age. You may want to look into conventional treatments for him as well. It is important to learn and make informed decisions about his care. Here is a great general MS treatment article that includes info on IVSM treatment:

http://www.ajmc.com/publications/supple ... 2_S21toS27

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Re: 5 days of IV Steroids: Still no improvement

Post by Scott1 » Sat Feb 21, 2015 8:25 pm

Hi,
Can you provide us with a bit more colour about his diagnosis, what the people treating him say, what tests he has had and what ones are unusual? As he is young can you detail what his history has been?

Regards

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Re: 5 days of IV Steroids: Still no improvement

Post by vesta » Sun Feb 22, 2015 7:26 am

The Neurologist Ashton Embry worked out an effective healing regimen for his son Matt who had developed MS. Matt's video can be found at

http://www.mshope.com

His ideas resemble my own experience.

THE FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, 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 ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, artery etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)

Previously published on my site MS Cure Enigmas.net

www.mscureenigmas.net/

Wishing you and your son the best.

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lyndacarol
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Re: 5 days of IV Steroids: Still no improvement

Post by lyndacarol » Sun Feb 22, 2015 10:35 am

eric593 wrote:IVSM only reduces inflammation...

The good news is that despite earlier beliefs, IVSM does not impact bone density, although there are other possible side effects as noted above.

http://www.ncbi.nlm.nih.gov/pubmed/25623251
I am very cautious, a very conservative person… I am reasonably sure that IVSM does much more than just reduce inflammation. I know there have been studies linking high-dose, long-term corticosteroid use with increased risk of diabetes.

The study cited here by eric593 is indeed good news; but I know people who attribute necrotic deterioration of their hip joints to steroid use and I, personally, will avoid the use of corticosteroids.

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Re: 5 days of IV Steroids: Still no improvement

Post by Flashover81 » Sun Feb 22, 2015 5:17 pm

Scott1 wrote:Hi,
Can you provide us with a bit more colour about his diagnosis, what the people treating him say, what tests he has had and what ones are unusual? As he is young can you detail what his history has been?

Regards
Hi, Scott. My son was 14 when he had Ataxia and balance problems. I am a Firefighter and it was around March when he presented with these symptoms. It looked at first like a inner ear infection with the balance issues. I waited a day and a half and called a Neuro and set up a appt.. When we arrived he did the balance test and also notice Nystagmus when he looked to the side " I Didn't even suspect a Neurological disease". Had a MRI the next day symptoms still the same, MRI came back with enhancing lesions. Neuro suspected ADEM "Acquired Disseminated Encephlo Myelitis". Spent 5 days on IVSM, didn't see improvement till day 5. Two 3 month MRI"s were good but the 12th month MRI showed a few new lesions and BAM MS diagnosis. He has had MRI's every 6 to 12 months with some being good others showing a new lesion, but no relapse till this year. He presented with left arm and left leg numbness weakness and balance issues. Believe me if it would have been only tingling and didn't get worse I would have just kept a eye on it. My son is active in the gym everyday and in good shape. "He reminds me a lot of Matt Embry if he was older".

We have a appt. Tuesday at University Of South Florida's MS Wing. I know time has come for a possible DMD as much as I hate it. We have been doing diet "Gluten Free and Organic everything". He also takes Protandim and 5,000 units a day of D-3 and we just started Methylcobalim B-12 shots about a month ago I am not home and forget the strenghth. I just didn't know if this was how the relapse process would go for some. I know nobody can know, just have to see.

I'm thinking our next step after the Neuro is checked for CCSVI. If you check my posts I asked some questions about when he had his first episode.

I appreciate all the support this site has given people over the years I've been here. I guess I'm just needing a little support for myself so I can be strong for my son.

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Re: 5 days of IV Steroids: Still no improvement

Post by Scott1 » Sun Feb 22, 2015 11:51 pm

Hi Flashover,

Thank you for the clear answer.

As good as this site is, we all have our own barrows to push so I'll try to avoid doing that.

Many of us don't subscribe to the concept that nothing can be done. The issue you have is properly interpreting the medical advice and weighing it against the legitimate needs of your son.

The cardinal feature of MS is demyelination but it is not the only issue. There are also problems with fatigue, mobility, the stomach and the bowel as well as metabolic disturbances.

When I was diagnosed 20 years ago the mantra was all about unknown genetic abnormalities. More often today, we question the behavior of the metabolism and look for environmental and infectious triggers.

A finger is often pointed at Epstein-Barr virus. Did your son have glandular fever? Others look to Lyme disease and its coinfections such as mycoplasma, bartonella, babesia and similar bacteria. Have you lived in an area prone to tick bites?
Did your son become unwell with an obvious infection in the recent past? Has he recently been poorly with symptoms not strictly related to MS?
Regarding testing, what blood tests has he had?
There are lists of tests a mile long and many suggestions about what to do in here.
I would start at the obvious and test for EBV, Lyme, mycoplasmas, bartonella and babesia, chlamydias, rickettsias and anything else that a good doctor can suggest. This is a case of eliminating obvious suspects.
I would suggest a fasting amino acid test. The purpose of that is to test if deficiencies are apparent in normal metabolism by looking at the amino acids you make yourself or if you are deficient in the ones you ingest. If the diet is adequate and a deficiency exists your son may have an infection that is outcompeting his metabolism. Again, look to eliminate the obvious.
The other test I would do is a uric acid test. Uric acid is the final step in purine metabolism. If it is low then we need offset that.
A neurologist will probably suggest a common MS drug. The mechanism behind how some medications work is not well understood (if at all) and side effects can be an issue. There are some drugs that aim to slow the time between attacks by moving the inflammatory response to a different path. They do not aim to cure. Neurologists will say you have limited choices but really your choice for your son is going to depend on how well educated you become. Here's my donation to your task - http://www.thisisms.com/forum/regimens- ... 24019.html

It could be better written but it's a start. I don't touch CCSVI. Nothing against it, I just look at other things. It would be a big step if the obvious question of infections has not been addressed.

The important thing for you is ask questions. You will get a wide variety of answers but don't obsess about them. Look for a grain of truth that fits the problem you can see. Your best guide will be your son. Listen to him even if he struggles to make himself clear. Tell us what he tells you and there are plenty of us who will probably relate a common experience.

My most usual analogy is to say we are peeling an onion. Go one step at a time but keep asking.

Regards

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Re: 5 days of IV Steroids: Still no improvement

Post by lyndacarol » Tue Feb 24, 2015 7:48 am

Flashover81 wrote:My son was 14 when he had Ataxia and balance problems. I am a Firefighter and it was around March when he presented with these symptoms. It looked at first like a inner ear infection with the balance issues. I waited a day and a half and called a Neuro and set up a appt.. When we arrived he did the balance test and also notice Nystagmus when he looked to the side " I Didn't even suspect a Neurological disease". Had a MRI the next day symptoms still the same, MRI came back with enhancing lesions. Neuro suspected ADEM "Acquired Disseminated Encephlo Myelitis". Spent 5 days on IVSM, didn't see improvement till day 5. Two 3 month MRI"s were good but the 12th month MRI showed a few new lesions and BAM MS diagnosis. He has had MRI's every 6 to 12 months with some being good others showing a new lesion, but no relapse till this year. He presented with left arm and left leg numbness weakness and balance issues. Believe me if it would have been only tingling and didn't get worse I would have just kept a eye on it. My son is active in the gym everyday and in good shape. "He reminds me a lot of Matt Embry if he was older".

We have a appt. Tuesday at University Of South Florida's MS Wing. I know time has come for a possible DMD as much as I hate it. We have been doing diet "Gluten Free and Organic everything". He also takes Protandim and 5,000 units a day of D-3 and we just started Methylcobalim B-12 shots about a month ago I am not home and forget the strenghth. I just didn't know if this was how the relapse process would go for some. I know nobody can know, just have to see.

I'm thinking our next step after the Neuro is checked for CCSVI. If you check my posts I asked some questions about when he had his first episode.

I appreciate all the support this site has given people over the years I've been here. I guess I'm just needing a little support for myself so I can be strong for my son.
I encourage you to read this 5-page thread. Chad's story may be similar to your son's – some similar symptoms; Chad thinks his symptoms began when he was 15 years old.

http://www.thisisms.com/forum/undiagnos ... 24773.html

Your son is getting methylcobalamin shots for a month… Did a HoloTranscobalamin (a.k.a. HoloTc) test discover a B12 deficiency? Is he seeing a hematologist? Perhaps the strength is not adequate; perhaps the frequency is not often enough (I am trying daily injections); perhaps one month is not long enough.

Please let us know how it goes. We really do want to be supportive of each of us here; we understand the anguish of health problems and we know you will "be strong for [your] son."

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Re: 5 days of IV Steroids: Still no improvement

Post by sfanv » Tue Feb 24, 2015 11:24 am

I just recently got out of the hospital and they gave me 5 days of iv solumedrol. The whole time I was in there I had little to no improvement, and when I got out they started me on pill form steroids. Those didnt help right away either, but now a few weeks later I'm back almost back to my normal self. As the steroids are to help with inflammation, I think it just depends on the amount of inflammation there is, and that will determine the speed of the recovery. Don't know if you're religious but I have a St Raphael necklace I wear everyday. Hes the healer saint. Some may think it's silly but I feel like as long as I'm wearing the medal its protection against ailments and its a constant prayer asking for healing. Maybe you should try getting him one? Or yourself one? Like I said I don't know if you're religious but little things like that seem to help. It's faith that keeps people going.

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Re: 5 days of IV Steroids: Still no improvement

Post by Kronk » Sun Mar 08, 2015 9:10 am

Flashover81 wrote:Went to the Hospital on Sunday and started the IV Solumedrol....
Is there anybody that has had a similar experience that can shed some light?....
Hi Flash,

I had several relapses in my first year of MS. I ignored the first relapse, took oral prednisone (which did nothing except make me look like zombie) for the second, and then IV solumedrol for eye issues twice in 6 months. The first round of Solumedrol worked in days, literally i went from near blind to perfect vision in 2 sleeps. The second relapse affecting my eyes 6 months later was much worse. I did a total of 3 weeks on solumedrol. Mid way through the second week both eyes recovered to near 100% but then my right eye got worse and the 3rd session did nothing.

What i am trying to say is that it is hit or miss... Solumedrol and other Corticosteroids work by closing the damaged blood-brain barrier and reducing inflammation in the central nervous system. How much drug gets to the affected area, how quickly the body metabolizes it, how large the BBB damage is, and how active the lesion will all determine how effective the drugs are. I have also read that after the first use of steroids future uses will not be as effective. Like the body builds up resistance to them or something.

Your son is young, and has a TON of growth hormones, testosterone and peptides flowing in his body. All these are CRITICAL to regrow myelin post relapse. I strongly suggest you encourage him to try a low Saturated fat diet, and take up powerlifting in the gym. I wont be so ignorant as to say this is a cure but I had 5 or 6 relapses in my first year, I started Copaxone, LDN, Swank and the Ritchie Russell REPS training and I have had 2 relapses in the past 2 years... 1 was a toe... yes a toe... and the second was a patch of skin on my right shin. My right eye is also 95% of what it used to be myelin will recover if given the building blocks.

Best of Luck and let me know if you or your son have any questions about weight training.

http://www.thisisms.com/forum/regimens- ... 23868.html

Cheers,
Ken

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