Fed up PRMS looking for anything !!

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vender
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Fed up PRMS looking for anything !!

Post by vender » Tue Oct 30, 2018 1:32 pm

I was diagnosed about five years ago. How is it possible for something to destroy you so quickly? There is got to be an answer that will get my life back. I have tried your Gilenya now trying Ocrevus. Nothing, no change at all. The past three months has been hell! I told my neurologist I would wait for my second full dose of Ocrevus. The only thing that seems to maybe help is a 3 day Solu-Medrol infusion which I just finished and still feel like shit. I just can’t seem to wrap my head around how fast my legs are failing me. My eyes, my pelvic floor dysfunction, now I have something going on with my esophagus...
I just truly don’t get it life is going along, I get back from the Czech Republic, my eyes go loopy and I’m dizzy all of the sudden. That was the end I guess. I apologize for bitching but this is absolute bullshit from a guy who could do anything! Anything! Now I struggle to not fall over from spinning. Poor me.
Does anyone have bilateral Internuclear ophthalmoplegia and found a MS drug that helps?
Is anyone have PRMS and found a drug that helps? I’m desperate

ElliotB
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Re: Fed up PRMS looking for anything !!

Post by ElliotB » Tue Oct 30, 2018 2:14 pm

Sorry to hear your are not doing well.

What non-pharmaceutical treatment have you tried?

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jimmylegs
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Re: Fed up PRMS looking for anything !!

Post by jimmylegs » Tue Oct 30, 2018 4:39 pm

hey there, i know you're not interested in the 10 mins a day of effective PT for the BINO, and i don't recall progress re tweaking forms and doses of magnesium for other symptoms either. unfortunately, those would still be my go to suggestions in your case. i don't understand the resistance, and i'm afraid i don't have any new suggestions. hope you find something.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Scott1
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Re: Fed up PRMS looking for anything !!

Post by Scott1 » Tue Oct 30, 2018 11:01 pm

Hi,

I had a similar eye problem in 1994 when I was first diagnosed. Three days on a drip in hospital did help me but I didn't have a prolonged experience like yours.

Who defined you as primary remitting and why did they say you were?

I found life on the recognised MS drugs was just as you describe and did a lot better without them. Sometimes the side effects are worse than the real problem.

There isn't a "one stop shop" type of medication. Don't be afraid to discuss with your doctor the idea of dropping those heavy medications and seeing what happens.

If you do, then observe how you are and then we can look at each problem separately. I am presuming you suffer fatigue, muscle tightness and possibly a couple of other issues as well as the eye problem.

Waiting for a drug could take a long time.

Regards

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kostas
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Re: Fed up PRMS looking for anything !!

Post by kostas » Tue Oct 30, 2018 11:34 pm

Sorry for your troubles. I suggest to discuss with your doctor the solution of Novantrone.

All the best.

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NHE
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Re: Fed up PRMS looking for anything !!

Post by NHE » Wed Oct 31, 2018 12:57 am

Scott1 wrote:Who defined you as primary remitting and why did they say you were?
I think PRMS means progressive relapsing MS.

https://www.nationalmssociety.org/What- ... lapsing-MS

Kheuer
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Re: Fed up PRMS looking for anything !!

Post by Kheuer » Wed Oct 31, 2018 4:51 am

All the clinical data shows that ocrevus takes 2 years to show any efficacy at stopping progression of the disease give it some time.

Emerging data from some of the longer Trials of ocrevus have shown that it has actually helped some patients regain lost cognitive and physical function

You could also always try the klenner protocol it is predominantly very large doses of B vitamins both intramuscular oral and intravenous but even klenner in the sixties and seventies said that it would take years for Recovery depending on how long and how severe the MS patient symptoms were

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Re: Fed up PRMS looking for anything !!

Post by Kheuer » Wed Oct 31, 2018 4:54 am

My own experience with only 1000 mg of nicotine acid because that's actually how much it takes me to flush now is that it completely removed my need to take Skelaxin for the pain and has also increased my stamina such that prior to diagnosis I could barely get out of my car and now I can mow my 2/3 of an acre yard with a walk behind push mower

I have only had one infusion of ocrevus which was in May of 2018 one month after diagnosis and about a year after the onset of my symptoms.

so the ocrevus is most likely not causing the results that I am attributing to 1000 mg of niacin daily. I also take two thousand micrograms of B12, 500 to 1500 mg of thiamine , 200mg of vitamin B6 and I am starting to add calcium pantothenate as well as multi grams of ascorbate salts

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jimmylegs
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Re: Fed up PRMS looking for anything !!

Post by jimmylegs » Wed Oct 31, 2018 5:00 am

hey there k, have you looked at the interactions between fatty acid status and niacin flush reaction? i know my own flush reaction is decent at 500mg and i test that it works very infrequently. have you considered/implemented any other routes to vasodilation than niacin alone? i'm thinking of niacin's known capacity to cause liver damage in high doses over the long term.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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tzootsi
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Re: Fed up PRMS looking for anything !!

Post by tzootsi » Wed Oct 31, 2018 5:35 am

Have you considered Dr Coimbra's vitamin D protocol?
There are currently tens of thousands of MS patients on this protocol around the world, and dozens of web sites.
https://vitamindwiki.com/Dr.+Coimbra+ex ... 3+Feb+2015

vender
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Re: Fed up PRMS looking for anything !!

Post by vender » Wed Oct 31, 2018 6:50 am

You are going to hate me but I'm going to disagree with everyone. Number one true MS is not controlled by diet. I wish it was. Also Ocrevus and this is directly from Genatech should work immediately after your very first infusion. The studies done by them are garbage.
This is what I hate about MS just eat some bananas and butter and you'll feel better. Thus the frustration! Has anyone tried the all Cheeto's diet?
I'm being serious think about what you're saying do you think everyone with MS eats garbage? So it's a disease that is controlled by your diet. Stop it maybe RRMS but not progressive forms.
Again frustrated.
I have found since I've been diagnosed people with progressive forms do not use these boards I'm beginning to see why. Sorry for being negative.

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Re: Fed up PRMS looking for anything !!

Post by ElliotB » Wed Oct 31, 2018 9:03 am

The bottom line is in the past few years some people with progressive MS have had some successes through a variety of approaches, which give me a lot of hope for the future, and hopefully you can see and will consider that there are possibilities for better times for you.

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tzootsi
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Re: Fed up PRMS looking for anything !!

Post by tzootsi » Wed Oct 31, 2018 9:08 am

The vitamin D protocol is not a 'diet' type treatment. If you read the technical papers on this, the theory is that people with ms have a resistance to getting vitamin D in their cells due to genetic issues. Vitamin D is really a harmone, and is crucial to all kinds of functions. By taking massive doses (carefully monitored thru blood & urine tests), enough D will get through and bring your immune system into proper balance. This protocol helps with all kinds of ms.

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Re: Fed up PRMS looking for anything !!

Post by Snoopy » Wed Oct 31, 2018 11:03 am

Vender, Primary Relapsing MS(PRMS) is rare, only 5% of those diagnosed with MS have this type. PRMS means you will have relapses but no remissions, so you cumulate symptoms/disabilities and continue to progress, although it might be possible to hit a plateau and stabilize. You are in a very difficult situation with this disease and I am really very sorry.

The National Multiple Sclerosis Society has grouped PRMS into Primary Progressive MS(PPMS). So far there hasn't been a DMT that has been shown to help those with PRMS or PPMS. You apparently have a Neurologist who is willing to try the DMTs to see if they will help you, but it can take time to know if any of these treatments will help. There is no cure for this disease including the DMTs.

Although eating healthy is good for anyone it will not change the course your disease takes. There are those who have eaten healthy and done everything right but still end up with a diagnosis of MS. The history of MS goes back to at least the 1400s

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Scott1
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Re: Fed up PRMS looking for anything !!

Post by Scott1 » Wed Oct 31, 2018 3:34 pm

Hi again,

I stand corrected on PRMS. As I don't much like those acronyms I was a bit sloppy.

The point I am trying to make is the drugs sometimes make you feel worse. Having many different types of MS defined helps drug companies more than people.

If there was only one type of MS most of these drugs wouldn't be on the market because the testing would require large sample sizes and longer testing periods. Under those constraints, most of them would fail. The drugs are mainly targeting the pathways of inflammation. They are not targeting spasticity or fatigue. The hope is that they make a difference to those issues but, after looking closely at them, I can't see how they can.

When you are defined as progressive your doctor is just saying "I can't make the drugs work".

Fatigue has more to do with how much ATP you make and how your adenosine receptors are working. Spasticity is due to how excitation - contraction coupling in your muscles works. None of the drugs are going to help much with that. (except Baclofen will target the GABA receptors and Dantrium will target the ryanodine receptors giving muscle relief).
Your vision problems are indicative of an upper motor neuron lesion. That's a sign of inflammation. The Solu-Medrol infusion is a powerful anti-inflammatory but you can't stay on it because it is too general in its effect.
The drugs you are taking have taken the orphan drug path to market. Because they seemed to have some benefit to a subset of MS symptoms that gives them a shortcut to being released. They have not been tested on huge samples over extended time periods. None of them are marketed as or claim to be cures.

My suggestion to you was stop taking the drugs and see what happens. Coincident with that you need to look at your lifestyle to see what are the inflammatory elements. I don't know if you smoke but that would be the first thing to stop.

What is in your diet can be inflammatory. There are a string of messengers called cytokines that can be either excitatory or inhibitory that food stuffs can activate. That can influence inflammation. Free radicals, which we all generate, can make the proteins in your body fold the wrong way so they can't dock with other proteins. You don't want that.

I understand your frustration. Many of us have been there. Dump the labels and talk about your symptoms. There should be a lot more going on with you than just your eyes. Looking at other symptoms will probably help your vision anyway.

The golden rule when you look at your doctor is to ask "is he helping me?". If you keep getting worse then what is the answer?

Most of us use clinicians but some of us aren't ruled by them.

What other symptoms do you have?

Regards,

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