New neuro

[Daisycat]

So I saw my new neurologist yesterday. He was a major improvement from my last one, but I am still not sure he is the right one for me. I have an appointment with another one in a few weeks so I will see how that goes. This next one is supposed to be more specialized on this disease and was someone my mom told me to see when this all happened. The only downside is she is 80 miles away.



My maybe new neurologist said that he would agree with me that this is CIS , but because of the MRI findings it is likely in 10-20 years I will progress to the first stage of the other one. I am still going to wait to see who that third one agrees with before deciding what to believe. However, him saying that has given me a very small amount of hope. I am still not going to stop using my medicine even if the third one agrees , since I have read using one slows down the transition… but I am still waiting to see.


I remember his face when he asked my story and I told him the first thing I had was double vision. He asked and what else, and when I told him nothing he looked amazed that I was diagnosed so quickly with the other. He asked me to think back and think if I could think of anything else that could be an “attack”. I told him I could make anything into an attack if I wanted to , but for something like double vision no I have had nothing like that.



So…. I guess it is a waiting game to see who was actually right. If I go with the one 80 miles away , I could still get my follow up MRI in the town I live in since my PCP would be able to order one for me , and the 80 mile away one could still see the results. I just hate the idea of switching completely since I love my PCP and everyone else I have seen at the first place. Just that neurologist…. He needs lessons on people skills.


I really like the idea of all my stuff being at one place and not having to swap back and forth between clinics/hospitals. I wish they would just let me switch to a new neurologist in town (the hospital where my old one is… but that is something I am not going to even get into. I am beyond disgusted with how the old one treated me, and the fact he said CIS does not exist and no one ever has had that, but I am going to stop talking about him now because I am trying to avoid stress)


My maybe new one did do a couple of new tests I have never heard of, but at this point I think it is CIS or the other thing.

So I have a few questions for you guys since I was kind of in shock that I felt I actually had someone listen to me. These are the 2-3 things I ran out of time with when talking to my maybe new neuro…

1. I have read a lot about different types of fasting to slow down progression and maybe even help repair some damage. One of them is water fasting. Now there is no way I could do the 21 days some things said, but I read that 1-2 days a week can help. Has anyone else tried this?

I know fasting for 18 hours a day is helpful. I have been doing that and mostly have so much more energy and sleep so much better. I know 100% that Dr Google is bad , but the studies I read about were based out of Harvard (yes it was done using mice)… but still. If I am feeling this much better are there any harmful effects?


2. What else can be done to help reduce the risk of this progressing from CIS (if that’s what it really if to the other thing). I have read way too much on the internet and I figure you guys would know better than Dr Google.

3. If the third one agrees with the idea that this is CIS is there anything I could do about the first one refusing to even consider that idea? I feel like if he is that way with me, he is probably the same with other patients and something should be done. Should I let it go or should I try to pursue something being done about him. If it really is CIS and I have spent the past 13 months thinking every single day if I should just go ahead and go to Switzerland I am furious. ( this was NOT something I was planning to ask my neurologist , but I wanted to see what you guys thought)

4. Is the Swank diet the best one and is sodium really that bad for this disease. I have read confliciting things so I am not sure. So it was mostly diet type questions I forgot to ask him about , but he answered everything else I had a question about.



Anyway… I am going to be on here on and off sometimes. I still really need a break from thinking about this and I did enough Dr googling yesterday. But I’ll be around I just wanted to give everyone an update.

But I'll be around on and off. So I will "see" you guys soon I am sure.

[Mamabug]

So I have a few questions for you guys since I was kind of in shock that I felt I actually had someone listen to me. These are the 2-3 things I ran out of time with when talking to my maybe new neuro…

1. I have read a lot about different types of fasting to slow down progression and maybe even help repair some damage. One of them is water fasting. Now there is no way I could do the 21 days some things said, but I read that 1-2 days a week can help. Has anyone else tried this?

I know fasting for 18 hours a day is helpful. I have been doing that and mostly have so much more energy and sleep so much better. I know 100% that Dr Google is bad , but the studies I read about were based out of Harvard (yes it was done using mice)… but still. If I am feeling this much better are there any harmful effects?

I've read those same studies, I think -- about the 18 hour fast. I haven't tried it, but it doesn't sound that hard. I've thought about it -- even if only 2-4 days per week. I've already made so many changes advocated by my functional medicine doctor, that I'm not ready to add one more yet. But, I might, in the future.

Dr. Google is bad if you're pulling info from sources that aren't reliable. It's not so bad from Harvard or from other reputable sources.

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2. What else can be done to help reduce the risk of this progressing from CIS (if that’s what it really if to the other thing). I have read way too much on the internet and I figure you guys would know better than Dr Google.

One thing you can do is be good to yourself. Reduce your stress. Stop worrying. Stress is horrible. It can turn healthy people into unhealthy. It can make chronically ill people worse. Be good to yourself.

Regarding diet -- There are members on MSWorld that really believe that diet makes a difference. And, there is research out there to support that. The problem is, there are so many different MS diets out there. It's hard to know which to follow. The Terry Wahls Diet, the McDougal Diet, MS Recovery Diet, Matt Embry, Swank Diet, Overcoming MS Diet, Best Bet Diet, Paleo diet, etc.

I'm currently seeing a functional medicine doctor who advocates no wheat, no dairy, no added (cane) sugars. It's basically an anti-inflammatory diet, which is advocated in many of the MS diets. Wheat and dairy both promote inflammation. Often, traditional MS doctors don't put much stock in diets designed to help MS. Other than eating a generally healthy diet, they may not tend to believe that they make a difference. I tend to believe that a combination of traditional medicine and natural medicines might be a good combination. So I see my MS Specialist for my MS med (Copaxone) and for MRI's, etc. And, I see Dr. G for functional medicine: diet, resiliency strategies, etc.

If you want to know more about my journey, you can read about it here, or maybe you already have.
https://www.msworld.org/forum/showth...ree-sugar-free

I had another appointment yesterday, but I haven't posted about it yet.

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3. If the third one agrees with the idea that this is CIS is there anything I could do about the first one refusing to even consider that idea? I feel like if he is that way with me, he is probably the same with other patients and something should be done. Should I let it go or should I try to pursue something being done about him. If it really is CIS and I have spent the past 13 months thinking every single day if I should just go ahead and go to Switzerland I am furious. ( this was NOT something I was planning to ask my neurologist , but I wanted to see what you guys thought)

I don't really have an opinion on this.

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4. Is the Swank diet the best one and is sodium really that bad for this disease. I have read confliciting things so I am not sure. So it was mostly diet type questions I forgot to ask him about , but he answered everything else I had a question about.

Yeah; who knows which is the best diet.

About salt. My doc says I should use sea salt. The real sea salt. Not Morton's that you get in the grocery store, but the kind you buy in health food stores. It's not pure white. It can look somewhat discolored; some is even pink, etc.[/QUOTE]

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Anyway… I am going to be on here on and off sometimes. I still really need a break from thinking about this and I did enough Dr googling yesterday. But I’ll be around I just wanted to give everyone an update.

But I'll be around on and off. So I will "see" you guys soon I am sure.

On and off is probably an OK idea. You've been so focused on your MS this past year. Take breaks. Take care of yourself. Ask Dr. Google about resiliency strategies, and about the Blue Zones and what other countries do to increase their health outcomes. If you google, google uplifting things, not things that make you worry. Take care of yourself. Pamper yourself.

[pennstater]

Welcome back. Glad to hear it went well.

Since they think stress can trigger relapses for some, work on methods to deal with it. We can't eliminate it, but how we respond can help.

Likewise, reducing inflammation in the body. That is what some of the diets try to do.

I have a friend who had CIS, optic neuritis was her only symptom. She followed the Swank diet with a rare occasional treat off diet, did yoga, rode her bike, jogged, and lifted. She still wound up 8 years later with MS. That being said, she didn't take a DMD, even after they updated guidelines to recommend specific ones to either delay or prevent MS developing.

As for diet and fasting, it is an area that is getting more attention, but no definitive guidelines for MS. My neuro just recommends the Mediterranean diet for now, which includes many anti-inflammatory foods, with a stay tuned as research continues. The problem he has with some of the fasting and other diets are the amount of supplements that are needed then and that your body responds better to nutrients in food. He reserves supplements for deficiencies, those who can't eat certain foods, and also where science supports it (vit D, Omega-3, etc...).

You can always try different diets and whichever you feel the best on, stay on.

There are some people on here who see a local PCP or neuro and once a year, go see the MS specialist. I would let your PCP know that the neuro doesn't acknowledge and actual diagnosis and that you find it unacceptable. Not so much that he wouldn't diagnose you with it, but that he does not acknowledge it as a real diagnosis.

Just curious. What did he say about the fact that your MRI showed both inactive and active lesions (ones that lit up)? Was it that it satisfied disemination in time criteria, but not space? Always curious about this, as neuros seem to handle it differently?

Good luck in a few weeks.

[KoKo]

Hi Daisycat

I have read a lot about different types of fasting to slow down progression and maybe even help repair some damage. One of them is water fasting. Now there is no way I could do the 21 days some things said, but I read that 1-2 days a week can help.

Why not try the Fasting Mimicking Diet? You eat half your normal calories on 3 days a week, followed by Mediterranean type diet.

Fasting-Mimicking Diet studied as potential MS treatment

Researchers in California tested a diet that involves eating half the usual number of calories for three days in every seven. When mice with a disease similar to MS were fed the diet for three weeks, they showed improvements in their symptoms compared to a control group who maintained their usual diet.

https://www.mstrust.org.uk/news/news...l-ms-treatment

I've been doing one day a week, half the calories, and also I eat the Mediterranean type diet regularly.

I'm underweight as it is, so I'm hesitant to go for half the calories, three days a week.

Take Care

[Myoak]

Hello Daisycat,

Your health is worthy of a specialist and the 80 mile drive… lots of people drive much, much further to see the best possible specialist. You can and should keep your present PCP, also, of course.

To answer your questions…

(1) Fasting… If you have more energy and sleep better with what you are doing, why not continue? Fasting appears tremendously beneficial with little downside.

(2) What can be done to reduce CIS progression? This link addresses that topic… http://multiple-sclerosis-research.b...l#comment-form

(3) Please forget about doing something about your first neuro… just move on.

(4) Is sodium bad for this disease? Here is a recent article which mentions salinity… https://medicalxpress.com/news/2018-...-multiple.html

Which diet is best? I think it varies according to each individual’s characteristics and needs.

However, there are modifiable health behaviors (nonsmoking, healthy diet, physical activity, and body mass index) and modifiable biological health factors (low blood pressure, low cholesterol, and low fasting glucose) which benefit virtually everyone.

https://www.medscape.com/viewarticle/901055

[Carlyle]

Hello Daisycat,

Your health is worthy of a specialist and the 80 mile drive… lots of people drive much, much further to see the best possible specialist. You can and should keep your present PCP, also, of course.

To answer your questions…

(1) Fasting… If you have more energy and sleep better with what you are doing, why not continue? Fasting appears tremendously beneficial with little downside.

(2) What can be done to reduce CIS progression? This link addresses that topic… http://multiple-sclerosis-research.b...l#comment-form

(3) Please forget about doing something about your first neuro… just move on.

(4) Is sodium bad for this disease? Here is a recent article which mentions salinity… https://medicalxpress.com/news/2018-...-multiple.html

Which diet is best? I think it varies according to each individual’s characteristics and needs.

However, there are modifiable health behaviors (nonsmoking, healthy diet, physical activity, and body mass index) and modifiable biological health factors (low blood pressure, low cholesterol, and low fasting glucose) which benefit virtually everyone.

https://www.medscape.com/viewarticle/901055

my oak,thanks for sharing those articles

[Daisycat]

Mamabug


I think sea salt is what I have been using when I do use salt. I have been trying so hard to avoid it I am not really sure what type I have (if any). I know I have been slacking the past few days on my diet and I can defiantly tell the difference. I have less energy and don’t want to really do anything.

Fasting all day or restricted fasting made me feel so much better and I was in such a better mood. I’ll probably go back to the restricted fasting and the 1-2 days a week all day fasting. I just feel so much better when I do this.


Pennstater


The swank diet seems to me like it would be the easiest for me to follow. Some of the others sound like it would get to the point to where I wouldn’t even want to eat because I would hate everything I was allowed to eat. I just can’t give up my coffee. That can be my treat… I need it to be up early every day.


My maybe new neuro said he

1. Did not agree that I had any spinal lesions and even had someone else review it with him.


2. Was it that it satisfied disemination in time criteria, but not space? – I am pretty sure this is what he was getting at. I was again kind of in shock so I cannot remember everything he says.

KoKo

I am doing the fasting mimicking diet 3 days a week , water fasting 1 day a week , and thinking of doing the Swank diet the other 3. All of the other diets sound like they would be very hard for me to follow with my taste in food and lifestyle. I am not underweight or overweight so I can handle the extra weight loss for now. I feel better when I am at the lower end of my weight range. So this might be for the best.


Myoak

Yes I agree. I didn’t really follow any type of diet the past two days and I can already tell the difference. I have no energy and feel bloated. And thank you for the articles I will read them when I get back today.

[KoKo]

I am doing the fasting mimicking diet 3 days a week , water fasting 1 day a week , and thinking of doing the Swank diet the other 3. All of the other diets sound like they would be very hard for me to follow with my taste in food and lifestyle. I am not underweight or overweight so I can handle the extra weight loss for now. I feel better when I am at the lower end of my weight range. So this might be for the best.

Sounds like a good plan.

Do what is workable for you, and also what makes you function and feel the best.

Take Care

[pennstater]

Daisycat - great news that no spinal lesion. I know sometimes there can be disagreements on brain lesions, but I thought spinal was more cut and dry.

If your 3rd opinion also agrees no spinal lesions, I would make sure your PCP knows. That combined with his denial of CIS as a real diagnosis - if nothing else, he may want to stop referring patients to that neuro.

Hope you continue to feel well on whatever diet you choose to follow.

[Leenyi]

CIS stands for clinically isolated syndrome. My take on that is it's just one isolated event.
So a person who has optic neuritis or double vision or some other single symptom but no other symptoms or evidence of past disease would have that label but when there is evidence of a second event separated by space and time then you get the diagnosis of MS.
So my take is CSI isn't a disease but just a way of saying that it only happened once.

[Jules A]

CIS stands for clinically isolated syndrome. My take on that is it's just one isolated event.
So a person who has optic neuritis or double vision or some other single symptom but no other symptoms or evidence of past disease would have that label but when there is evidence of a second event separated by space and time then you get the diagnosis of MS.
So my take is CSI isn't a disease but just a way of saying that it only happened once.

I agree and also believe it to be a junk term they give as a placecard. The rates of later getting a MS diagnosis are significant. It reminds me of the past approach of minimizing our risks of passing it along to offspring. I get that MS is an awful diagnosis to drop in someone's lap but personally the smoke and mirrors is insulting and can provide false hope or a treatment delay.

"Over 80% of CIS patients with MRI lesions go on to develop MS, while approximately 20% have a self-limited process."

https://www.hindawi.com/journals/isrn/2012/792192/

[pennstater]

I think the important thing is they recommend treatment now for CIS, although I think the DMD options are more limited that actual MS diagnosis. I haven't kept up with that aspect.

CIS is a better diagnosis than no diagnosis. At least starting a DMD when CIS may prolong the actual second event, which may help with long term symptoms. Much better than just leaving people in limbo.

[Daisycat]

Pennstater


I always thought lesions were cut and dry. I had no idea that there could be disagreement about them. I am surprised that with all my Dr googling I hadn’t come across that. I am defiantly going to talk to my PCP once all of this is over and I find out which neuro I am sticking with.

Leenyi


I agree that CIS means that the symptom only happened once , but it is my understanding that a high percentage of people with this will go on to develop the other disease at some point. That is why I am trying to do everything I can to prevent that from happening. Even if my new neuro ? is wrong I guess it can’t hurt to be doing these things anyway to prevent further progression.

Jules A


Yep I read that exact article, or at least one with similar statistics. I am OK with it giving me false hope. To me that is better than no hope and putting aside money every month for my Switzerland trip. At least this way I can enjoy however long I have at least to some point. And if 20% of people cannot go on to develop the other thing… well I will do everything I can to make sure I fall into that 20%. If I don’t I will at least know I tried my best, and enjoyed the last 5-10 years (or however long I have).


Pennstater


I plan to stay on my medication unless one day somehow I have at least 3 different neuros tell me I do not have CIS or the other and I am 100% healthy. I do know my maybe new neuro said he feels that I should defiantly stay away from anything that causes any type of immune suppression.


I am really actually thinking the third one might be the right one for me. I have read every single review about her online and only 2 were negative. One of the negative ones complained because her office was cold. That was all the one start review said…. So I am not sure if I should even count that one. I usually see the opposite and only unhappy people complain, so I am hopeful that she is as amazing as the reviews say.

[Jules A]

Jules A
Yep I read that exact article, or at least one with similar statistics. I am OK with it giving me false hope. To me that is better than no hope and putting aside money every month for my Switzerland trip. At least this way I can enjoy however long I have at least to some point. And if 20% of people cannot go on to develop the other thing… well I will do everything I can to make sure I fall into that 20%. If I don’t I will at least know I tried my best, and enjoyed the last 5-10 years (or however long I have).

I think this is an excellent strategy and similar to mine. I accept that I have MS but hope it doesn't do me like I have seen it did others. And if it does and I am able I have plans to address the situation.

Hoping for a positive outcome when realistically there is a chance, even if small, while doing whatever we can to remain as healthy as possible and enjoy our life in the meantime isn't false hope. I prefer to call it being proactive or making hay while the sun is shining.

[Daisycat]

I’m not sure why, but for me CIS is much easier to accept and say vs the other.

I guess i feel that ive been given extra “good” years , even if it’s only 5 before I progress. With all I’m doing hopefully it’s longer.

If/when I do progress I’ll see how I feel at that time.

Just hopefully the specialist I see agrees with the second neurologist opinion, but I gotta wait till the end of the month to see I guess.