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Hello! I am checking out new forums and trying to connect with other m.s.' rs.
I was diagnosed in '86, the same month as my 1st marriage. I had numbness and tingling which led me to a neurologist, an MRI and a spinal tap. I was lucky that my Dr. suspected immediately.
I don't want to downplay the years but overall they were pretty good.
Started Avonex when it was new and the only others were Betaseron and copaxone.
I have had the works over time with a little of everything.
Just this last year, I have become worse. I am trying to figure out where to go from here.
So, hello and here I am!
For me it'll be 30 years this summer. Never really bothered me for the first 10 years except for one bout of optic neuritis. Then in the late nineties I had a bad car accident and went downhill from there. Did the prednisone thing for a couple of years then tried beta interferon which was a complete waste of time. Tried the anti-biotic protocol couple of years back but that was a complete waste of time to other than stripping my gut. Thought I'd give the vitamin D protocol a shot too but its early days yet. I'm a 7 on the EDSS scale. Its been challenging especially the last few years. Very sceptical about CCSVI there's as many if not the majority where it hasn't done anything but rob them of money. I have some interest in stem cell research. Not HSCT but more the work thats being done at the Tisch centre in NY. My neuro told me back in 1986 that there would be a cure or substantial treatment with 10 years. Needless to say I haven't seen a neuro in years. Keep waiting for the big news but I'm afraid its not going to happen any time soon. Funny thing is that when I look around there's people who don't have MS but there more disabled than I am!
All I can say is...wow! You seem very intelligent self-disciplined. Most, especially me, could not follow your protocol. If you could please put your said formula in a pill I just might try it.
I admire all your hard work but I personally feel that multiple sclerosis is a multi-billion dollar business. There will never be a easily acquired, affordable fix for this disease. Really for any of the big ones.
"We found a cure for m.s. Yay! All you companies can close up shop and let all your people go home. We won't need our suppliers because we have no customers. Shut down all the ms websites, we are going home!"
Terry Wahls figured it out with a very strict diet and excercise plan. But she has no magic pill either.
While I sit here waiting for my pill and getting worse.
Unfortunately it doesn't come in a pill and just as sadly my literary skills are not that good.
Nonetheless, pity is not an answer and you haven't described what has changed. Happy to make a suggestion and simplify it as much possible but I need to know what the worst matter is first.
I am far less focused on a protocol than you might imagine. Washing your hair, cleaning your teeth and obeying the traffic laws are all protocols. If its harder than doing those things then we are overdoing it.
I have a view on what goes wrong but I don't have a monopoly on good ideas.
That's a start. So are your legs stiff or weak? Can you negotiate a step? Are you sore anywhere? Where does it feel tightest? Is one leg more of a problem than the other? Are your feet sore? How does the rest of your body feel when you walk?
What approach have you used up till now?
There is more than one way to skin a cat, as they say. At least you are asking and that's half the battle.
I am just a twenty three year veteran of diagnosed MS.
Like you, I survived quite well for a very long time but became unwell in 2014. it's all documented in the post I directed you to.
The issue with MS is too many people approach it with a closed mind and a fixed view. i know many of the downside aspects as I have been there but I also know you don't have to stay there.
The doctors have all the problems that come with a trained mind. They think in a linear fashion and much of what they do is by rote. Some try to guess what to do but are very random in their approach. Others become obsessive about methods of treatment. You shouldn't guess and you shouldn't be too fixated on numbers either. Change the PH or the temperature a little and some inputs produce widely varying and inconsistent outcomes.
I have spent years reading research journals and I have lived every day with MS. Overall I do very well and it seems a waste not to, at least, offer ideas that I find work when I can. I do not have a monopoly on good ideas though.
I am always interested in how other people fared as that's the only way to learn. You came here wondering where to go next. I know Avonex as I used it for a decade so we will have some common experience and i know what legs can be like. So, as you say, here I am.
If you want to try something and want suggestions then it helps to start with facts. Feelings are real but cold hard facts are better for a discussion.
Regards,
Last edited by Scott1 on Fri Feb 26, 2016 9:32 pm, edited 1 time in total.
Hi Scott1
Ploughed my way through most of your links even though alot of it I didn't understand. As far as the supplements are concerned I've been taking all of them with exception to carrot juice. As far as the drugs are concerned and especially since avonex is a Interferon, I can't bring myself to starting that again. I'm afraid I've lost all confidence in MS drugs.
There is no way that you can say for sure either of these drugs helped to improve your condition. One thing also that has become clear to me in this disease process is that no one remedy applies to all in the same fashion. I believe MS takes on different forms in different people albeit the cause maybe the same. One of the reasons why it has continued to stump even the most brilliant of minds. I am however glad that it works for you.
I don't take any specific MS drug either. Baclofen (in a tiny dose) is the closest to it. I can't believe how much some others take of it and I am not surprised they have problems. Did you mean the supplements I use (which isn't many) and does that include Valacyclovir?
I absolutely agree there are different forms but I really don't like the arbitrary divisions into remitting relapsing and the progressive forms. It really makes no sense unless you like a neat filing system.
The Avonex on its own did nothing for me. The Tecfidera made me very unwell and I don't like the FDA inference that it can induce PML.
The supplements I use very closely mirror the cardiologist, Steven Sinatra's, approach to metabolic cardiology. At the centre of that view is a plan to improve cell respiration because congestive heart failure is ultimately about reperfusion injuries that arise in an hypoxic condition related to inflammation.
The tightness we suffer is related to an inappropriate calcium signal leaving muscles in a contracted state. You would deal with it separately to the issues associated with inflammation.
I would never say any one thing made a difference. I have always said it is the sum of all things that make a difference and there is no magic bullet.
In September 2014, the spasm I had was so severe it stopped two chambers of my heart and whilst I could stand I could not walk much less contemplate a riser on a stair. Something I do must work as I am now operating at a very competent level. I will continue to offer ideas and you don't have to accept them. Whatever path you choose I hope you do recover. I have also dealt with some "brilliant minds" but the question I always ask is "is this person helping me?". If the answer is no then I move on and so should you.
Legs are very weak. If I stand for longer than 5 minutes they give out. I then fall or I sit quickly.
This is usually until about 8pm. After that they get stronger and I walk around a bit.
I retire about midnight, when I wake up, I am back to square 1. Like Cinderella
Frequently my muscles tighten and I do the board thing. After a few seconds it passes, and I am back.
For a start. I take lots of supplements and vitamins.
I had seizures about 15 years ago because I pushed myself. Ever since, I have taken anti-seizure drugs. Was on tegritol An anti seizure med that has since been taken off the market. I was in a fog. When I went to lamictal, I became sharp and clear. It was amazing. I loved that.
Hi. Just wondering how you have all coped with MS. I'm in limbo at the mo as I'm waiting to see the MS doctor. Have spoken to the neurologist that sent me for a MRI and it showed 2-3 lesions on my spine and some on my brain but neurologist couldn't see them. Just wondering how and where to start with fighting it really? Any help an advice would be greatly appreciated.
Well, I’m very glad you don’t take Tegretol. Its actual mechanism is not really understood and I would view it as an example of what a doctor tries when just guessing. That’s not really what you need.
Lamictal is a sodium channel blocker and that makes a lot more sense.
In a nutshell, for muscles to tighten a neurotransmitter sends a signal to the cell to flood with sodium. That will happen as quickly as potassium can be displaced from the cell. Through a series of steps, when sufficient sodium enters the cell it triggers part of the cell called the sarcoplasmic reticulum to release calcium. That calcium causes the strands of muscle protein to bind to each other rather than slide past each other and the whole muscle will begin to bunch. When it tightens sufficiently, ATP will signal the strands to unbind and the muscle relaxes and the calcium returns to the sarcoplasmic reticulum. If the calcium is released too quickly and too frequently the muscle will remain tight.
The normal method is to slow how quickly potassium leaves the cell as that regulates how fast sodium comes in. Baclofen is a potassium channel blocker and that would be the conventional way to regulate that system. Calcium channel blockers are usually blood pressure medications so may not be suitable. Sodium channel blockers are often used to treat bipolar disorders (as was the Tegretol) so I hope your doctor understood your case properly.
Magnesium will also release muscle tightness but we would need to look at the range of supplements you are using.
The issue I find interesting is that you are stronger after 8pm. How does that correlate with the time you take your Lamictal?
Weakness is difficult thing to decipher. Spasticity can become part of the way we hold ourselves up. If you release the tight parts the rarely used muscles, which have become weaker are exposed. Some weakness can also come from muscle fatigue. They just are so overused because other muscles do nothing. In either case it would imply the weak muscles need to be exercised to build them up again. I don’t mean vigorous routines. It could be a bit more walking, climbing stairs and a sensible exercise program such as a dancer would use in a Pilates class to rehabilitate.
There is a strong possibility that your tightness will have changed your gait and that can lead to second round effects such as bursitis of the trochanter. That could show up in one or both hips right on top of the femur. If you are sore round that area then you will move your hips and pelvis in a way that limits discomfort. In turn, that can cause your hips flexors to tighten, your glutes and hamstrings to tighten and then that impacts on your calves. When your calf tightens it pulls the muscles down through the Achilles and that can pull on the tendons running under the foot causing pain whether you are standing or not. Your lower back will tighten to compensate for the pelvis being incorrectly positioned and that can affect the rest of your back. Let’s hope this is not a problem for you. Tightness does not always occur because the specific muscles are affected. They can just be overworked.
My suggestion is we work out this pattern of weakness and “strength” in terms of how you respond to the time you take the Lamictal. We can test what happens if we change the time you take the tablet to see whether the 8pm recovery changes as well.
There are a number of things to try. I would find a small pilates class (max four people) where the instructor preferably has a dance background. The reason I prefer them is they are trained in graceful movement. Physios and sports people are not. You want a dancer’s eye looking at you (and they are lovely people). The focus should be on the leg series exercises on a reformer and stretching and strengthening the psoas. I know, at the start, you said you doubted you could remain disciplined. If you find the right teacher you will become addicted very quickly and you won’t see it as a chore but something you just love doing.
You could also investigate if a rehabilitation or sports medicine doctor can check by ultrasound for bursitis if your hips are sore. That can be treated with cortisone and anti inflammatories and would be important to be aware of in any exercise routine.
Once you have recovered some strength you could look at Botox injections in the hamstrings and calves if necessary.
So I am still working in a vacuum about your condition but the 8pm recovery is worth understanding.
Exercise is also an issue about how good your ability to pull on any energy reserve is but that is a separate discussion.
Regards,
(ps I'm not ignoring you, Chezy, but I think you are getting answers elsewhere on the boards.)
This is usually until about 8pm. After that they get stronger and I walk around a bit.
I retire about midnight, when I wake up, I am back to square 1. Like Cinderella
Pardon jumping in, as I have no answers at all, but, your post about strength during evenings struck a chord with me. My most productive time for exercises is 9pm or later... the exact time I should be trying to relax for sleep. I was dx 6 years ago, but you're not alone about evening strength. My neurologist suggested it may simply be due to being more active at nighttime in the past, but that doesn't hold true for me.
My only uneducated (please notice I did highlight it) theory is related to size and type of meals. My biggest meal is definitely at night, but I usually need ~1-2hrs before I see any benefit for strength and stiffness.
