30 year Anniversary with ms

[avengr13]

Hi there "who knows"! And may I ask how that handle came to be?

And of course you may "jump in"! I have a a best time of day for a long time. It used to be 6am. Then it was after 2 pm 3pm and now it has settled on 8pm. I am sure a part has to do with my husband who works nights. But I am that way on the weekend too. But it is a physical thing. Early in the day my legs give out on me. I can stand for a few minutes and then they sort of collapse. At night I can stand with straight legs. I am very careful, but I can stand to wash dishes, etc.
Mine seems to have nothing to do with eating or meals. Go figure
My husband drives me crazy because he try's to pinpoint a reason so that we can "fix it". I just go with it and make that my productive part of the day.

[Scott1]

Hi,

That issue about standing with straight legs is an example of what I mean by using your spasticity to hold you up. It has nothing to do with strength although it may feel like it. When you "sort of collapse" that is what happens when a muscle fatigues. This can happen for two reasons; the muscle is too weak to do the job and/or the muscle is working in isolation and becomes exhausted.

The pattern of your day becomes an important clue. You mentioned you take supplements. What do you take and when do you take it? When do you take Lamictal?

If you take something that relaxes your spasticity it will expose the weakness in the bulk of your muscles. Whether we can work out what is doing it or not, you need to do a regular form of exercise to regain strength in the weak muscles. It's not as difficult as it sounds as often it is just a matter of waking the muscle up. Muscles do forget what to do if you don't remind them.

The exercises don't have to be exhausting or unpleasant but they do need to be targeted. That is why I would suggest a small class pilates approach. Do not even think about mat classes or big classes. There is also a trend towards classes that are more like aerobics lying down. Those sort of setups are basically rubbish for the unthinking to get revenue in the door. You need a small group (max four) doing real pilates. If you go outside a traditional busy class time you will probably get it. If the instructor has a classical dance background then you are likely on a winner as the focus will be on the quality of the movement.

My guess is you are weak in the psoas (in the torso as described here - http://www.bowen.asn.au/bowen-therapy/a ... back-pain/ ) and your hamstrings have shortened and need to be stretched. Obviously lots of other muscles are interrelated.

There is no exercise pill but it can be a lot of fun and it won't feel like a traditional aerobic type or weightlifting routine.

Regards,

[avengr13]

Ok "scott1" I feel that you are spying on me! I am just teasing. You know me too well.
I am in physical therapy twice per week.
I live in an urbanized farming community that has very little to offer re physical enrichment such as any kind of Pilates. We have a ymca that is probably 50 years old. And I don't drive. Maybe I can check into something online.
Lamictal- 200 mg in a.m.
350 at bedtime
Mirapex 1.5 mg at bedtime for restless leg syndrome

[Scott1]

Hi again,

Who does the physical therapy? If they are physios they should have some training although they can be stuck in rut where the exercises aren't that useful. If they are physios ask if they can do a Thomas stretch on you to see how tight your psoas ("so-as") is. If they do it properly they will stick their thumbs into your hip flexors.

What do they do in the therapy? Even if you have to ask them to write down the names of the exercises that will help me make suggestions.

Physios aren't as clever as they think they are. They just have good memories for academic work. A lot of them just go through the motions. That's a big part of why I like people with a dance background as they focus on technique not repetitions. Don't forget to ask them if they know anyone who teaches Pilates or even Yoga. Some rehab people are just frustrated by their jobs and would love to tell you about what else they know.

Can you find out who is working at the ymca? You might find there is a good person who can watch you while you exercise. (you do need to be watched and corrected- don't practice your mistakes)
Online is an alternative we can explore but I'd rather find a way to force you out of the house. I want you to embrace the idea that you are on a mission and getting out is part of that. There are plenty of online Pilates videos but it is about isolating muscle groups and it is so easy to fool yourself that you are doing it right.

Mirapex has its own set of side effects. I hope you don't feel odd when you take it. I think that and Lamictal are probably relaxing your muscles in a fashion. Mirapex does influence dopamine levels and is also sometimes used for bipolar disorders so whoever is treating you has a one track mind.

Dopamine is a neurotransmitter but the one that has more to do with tight muscles is aceytlcholine. A lot of medical practitioners don't distinguish when they should. Anyway, it's what you are on. Do you take magnesium as that also relaxes muscles? If so, when?

If we assume the Lamictal and the Mirapex are both relaxing muscles then you take both at, say, 10pm and top up at ,say, 8am. 12 hours after that it's largely out of your system so your tightness comes back and you use it to stand for a while at the sink. Sounds like fun! A couple of hours later you repeat the process.

I wouldn't think of those two drugs as standard MS treatments. Your doctor is probably trying but it sounds more like guessing to me. It may be the dose needs adjusting. You might be using a sledgehammer to crack a walnut.

No matter what medication or supplement you take we have to get you doing some useful exercise. Can you tell me what you do in therapy, how you feel when you do it and does it make you tired?

You still need to build muscle strength. It sounds very much like you don't have the opportunity to do that with your current routine.

Are there other symptoms of MS that really compromise your day? Sometimes they can tell a lot about what else needs to be addressed.

Regards,

[avengr13]

I take Lamictal to prevent seizures. I had a gran mal about 18 years ago. I was on Tegretol for about 15 years. I was up to 1000 mg when I went to the emergency room and they said my levels were sky high. I realized there was a problem when I found out my pharmacist could not stock it anymore. My doctor then switched me to Lamictal. My mind became crystal clear which it had not been for many years.
Needless to say, I switched doctors after this terrible stage in my life. So that is why I take Lamictal. My new Doctor will require me to have new MRI's spine to brain. I have some large lesions on my brain.

My physical therapist is excellent. I have seen her off and on for several years. I will ask her about the
Thomas stretch. She begins by stretching my legs on the table. I have problems with my knees and am going to see an ortho doctor to discover the problem. After she stretches my legs I ride the stationary bike for about 15 minutes which is all that I can tolerate.

What do you think of tia chi? There is an excellent person near my home that has a program for ms patients.

My supplements - raw k complex, MSM, fish oil and some for a metal detox. I have been told by trusted consultants that heavy metals are highly concentrated. My father was a house painter using lead paints and cleansers on a daily basis when I was a child. I am starting co q10 on Friday.

I also take duloxetine for depression.

I do not work outside the home. I no longer drive. I am dependent on my husband to take me to my appointments. He is very supportive. He does not want me to go on Lemtrada or novantrone due to the high risks involved. He is very supportive of a more natural approach.he is a big fan of Terry Wahls diet. He does not want me to die of cancer while fighting ms. If you come up with a protocol for me to follow, he would be so pleased. We also will see my new neurologist on the 17th of this month. I would like to be prepared with my questions for her. She comes highly recommended. I haven't had an MRI's in years and do not know for sure if my lesions have moved to my spine. They were all localized in my brain at my last MRI's.

[Scott1]

Hi,

OK, now we are starting to cook with gas. I have no intention of changing your medication as that is a call for you and your doctor. The Duloxetine is what is called a reuptake inhibitor. If you take because of depression and it helps that's fine. No one can be sure about depression but I'm sure it can be caused by chemical reactions and cured by chemical reactions. A reuptake inhibitor holds the neurotransmitter in the synapse between nerve cells in an attempt to improve the signals efficacy. So do the other drugs you take so you do have a lot going on inside you. If you ever come off these things then do it under advice from a doctor and obviously very slowly. Sometimes a sudden cessation can cause a backlash that is worse than the reason you took them.

That gran mal may or may not have had anything to do with MS. You don't need MS to have one. It's a good example of why you need to dump the big label and just deal with each symptom on its merits. There will, of course, be overlaps.

I'm glad your husband helps you. He must be a good man. Real friends are hard to find so don't forget to remind him that you care about him.

When you start Q10 try to use a good brand. You want an oil based capsule. It's actually a big molecule so the better the delivery for the body the more likely it will be absorbed. I use this one which is in a vit E base - https://www.bioceuticals.com.au/product ... xcel-150mg
If you want to copy what I do then look at the ingredients note. It is not a cheap one but it is potent. Saving money on Q10 is really wasting money as the cheap ones just are not that useful.
The other thing to take in conjunction with Q10 is aceytl-L-carnitine. It usually in the "roid boy" section but it doesn't deserve any negative connatation.
Q10 gets into the mitochondria to drive the electron transport chain. The quality of that chain determines how well ADP will convert to ATP to make energy. Carnitine helps ADP and ATP cross the mitochondrial wall. So both Q10 and carnitine work well together.

I am very pleased you have a physical therapist. If we can communicate through you we might be able to introduce some things that I think will help.

Can you tell me what happens on the bike? Do your hips get sore, do you just get tired and what else is noticeable?

A protocol takes a while to establish. What works for me may not initially be right for you but we can work that out.

I hope your new neurologist has a good look at what you take now. I wouldn't rush into a blockbuster drug just because they say to because they don't really work or even pretend that they do. Look at the FDA note for each one before you try them.

Be wary of saying that you need a painkiller. I can't begin to tell how many times I was told I needed them and they were wrong. Of course, use one if you need to. No need to be a martyr.

My diet is more about avoiding than adding (although I do both). Things that are known inflammatory foods are, obviously, to be avoided especially anything you know you are allergic to as well as dairy, gluten and pulses. If you replace them with better alternatives you wont miss them. Doing that can be gradual. You don't have to go cold turkey!

If you can tell me about your sessions with your physical therapist that would help.

Regards,

[lyndacarol]

I am dependent on my husband to take me to my appointments. He is very supportive. He does not want me to go on Lemtrada or novantrone due to the high risks involved. He is very supportive of a more natural approach. he is a big fan of Terry Wahls diet. He does not want me to die of cancer while fighting ms. If you come up with a protocol for me to follow, he would be so pleased. We also will see my new neurologist on the 17th of this month.

In view of the following video, I feel it would be worthwhile to ask your GP, or even your new neurologist, to order a vitamin D blood test (it should be called "25-hydroxyD").

Dr. Cedric Garland – Does Vitamin D Prevent Cancer interview by Carole Baggerly (11 min.), Feb 2014:


"Breast cancer, for example, is a vitamin D deficiency; it happens that it is also true of colon cancer, it happens that it is also true of pancreatic cancer. And it's largely true of ovarian cancer, cancer of the brain; it's true with adult leukemia, bladder cancer, and it's true of cancer of the kidney."
@4:08 "What about those people, who have the misfortune of already either having or having had cancer, is it of any benefit then?"
"It is of striking benefit."

MS patients often have low vitamin D levels. It could be useful to know where your vitamin D level is.

[avengr13]

Thank you for that idea @lyndacarol. I will write it in my notes for the new neuro.

[avengr13]

@scott1 I know I mentioned it before but by a hair analysis I have been told the metal content in my body is in the top range. My father was a painter with lead based paints all around and my mouth has many silver fillings. I have been tol by several people and this hair analysis that this problem can be corrected by taking supplements.i take a Metal Detox supplement, Psyllium husk capsules and a syrup called "ionic woman" including calcium magnesium zinc and a host of others.
Do you think there is any validity to this assumption. And is there a reasonable explanation to the supplements to counteract this problem. Or does this sound like bunk and I was taken?
I would really appreciate your input on this @ scott1

[Scott1]

Hi,

It's a little outside my understanding. I know there is a process for achieving that which involves an intravenous therapy. Also, I'm not sure if its a medical standard or a homeopathic approach. I've seen it being done but I have never experienced it. I don't see supplements as good or bad in that context and would rather your advice came from an actual doctor rather than a natural therapies practitioner.
You are already playing around with prescription medication. A natural therapist will be lost with those but a doctor will (should) be trained to look for contraindications.
There are plenty of examples of supplements that are as good as useless because of poor manufacturing or storage. A doctor may be able to suggest things that of a better quality.
I think activated charcoal is something I have heard that is supposed to help.

I would definitely pay for a good quality probiotic and make fresh fruit and vegetables a big part of your diet. Look for things where the color goes all the way through plus apples, pears,avocados, berries and lots of dark green leafy vegetables. Sounds like I'm a vegetarian but I'm far from it. Fruit and vegetables are usually under represented in diets.
I'd rather eat a lot of those than take a concoction based on trust.

Anything you put in your mouth becomes part of soupy collection of stuff by the time it hits your stomach. It may or may not be useful depending on gut flora, your PH level, your temperature, your general health and whatever else you put in your mouth.
I certainly use supplements but not the way you are suggesting.

Regards,

[avengr13]

We have been on a paleo autoimmune diet which is basically like yours. Fruits a veggies lots of salads colors all the way through on veggies. I have found through a gluten free diet that I am allergic to many foods and have therefore cut them out
Thanks for your opinion on the supplements. I rather feel the same. I was taking a probiotic which I will concentrate on. I agree with you on coq10 even though some say that it is not useful.
Any thoughts on keeping up my energy. Probably the coq10? I am very tired these days.
Teresa

[Scott1]

Hi Teresa,

The energy question is the biggest one. Nothing else works well if you don't have energy. Have a read through the post I wrote on the 8th of Dec 2014 here - http://www.thisisms.com/forum/regimens- ... 9-165.html . It pretty much explains where the energy comes from.

Q10 is all about efficacy. If you buy a cheap brand you get what you pay for. You can also get it from offal although I struggle to find anyone who sells it and my kids would be in counseling for a year if I put it in front of them. The Q10 and aceytl-L-Carnitine work together.

If you ever wander through my interminably long posts you will see keep coming back to Valacyclovir or Valtrex. The reason I do that is my view (others can differ) is our fundamental problem is we make too much peroxynitrite (the product of superoxide and nitric oxide). The nitric oxide we make comes from a nitric oxide synthase that we can't do a lot about but the superoxide is over expressed when a B cell is affected by Epstein Barr virus (glandular fever etc). We can control that with an antiviral. It has helped me with fatigue but that idea is still on the outskirts of research. If you think a doctor will try you on that I will try to make some suggestions.

At a minimum I would take Q10 and aceytl-L-Carnitine. My Q10 dose is 700mg at night but you might want to start lower than that. I don't have fatigue and haven't had it for years. All through my last hospital stay I took my normal regime and was never tired even though I had an inflammatory attack. It showed me that there are numerous aspects to MS but I will only ramble if I go on.

If gluten is a problem, watch dairy and pulses. They all flatten the villi in your intestines which is not great.

Do you take magnesium?

It would be interesting to get a uric acid level test done to see how low you are against the range as that is an objective test as a starting point.

Regards,

[avengr13]

Thanks for your advice!