# Multiple Sclerosis



## TheBlackHeart88 (Jun 19, 2012)

Howdy ,
      I'm Rob, im 24 And diagnosed with MS the begining of this year. Fortunately, modern medicine has given me the ability to walk/run Again! I'm just testing the waters to see if anyone else has related disease and how it effects them on their hunts, or just in everyday life. I'm new to this, and although I've done extensive research, it always helps to gain knowledge first hand. Best of luck to all.

Cheers,
         Rob


----------



## Arrow Flinger (Jun 19, 2012)

Welcome


----------



## Ellbow (Jun 21, 2012)

Good luck to you Rob!

Doctor's thought I had MS but it was scarring on my brain from Lymes Disease. By the way, people who have MS have been found to have Lymes as well.....it causes MS and Lupus...just a head's up. Once the Lymes was treated MS symptoms went away... you might need to go to a CDC(Center of Disease Control) doctor to find one in your area that treat's Lymes.

I now feel better and can go without taking naps or having numbness in my legs and feet. 
Take care!
El


----------



## TheBlackHeart88 (Jun 22, 2012)

Thanks El, I actually just landed an appointment at the MS center this coming Wednesday! Hopefully all goes well there. I feel stronger then ever now, I just can't sleep and my mood swings with minor depression here and there. I don't notice it, but people around me do... I just want to sleep really, my ambien just isn't cutting it anymore.   Disease or no disease, the hunt is
On!   Hope all is well with your physical being and mental stability! It took me awhile to come around, but opening my heart to the good Lord has saved so much of my suffering.


----------



## Bkeepr (Jun 22, 2012)

Hi Rob, my Mom was diagnosed with MS at age 32 and is now 79.  She has been using beta interferon for years, and 4 AP for fatigue.  It seems that more new drugs are coming down the pike.  I hope you only have a mild case of it.  Be kind to yourself and rest when you need to!  Mom used to be a type A personality and stress definitely triggers attacks.


----------



## Rich Kaminski (Jun 23, 2012)

Rob, my Uncle Tony had MS. He got it in his late 30's. It started off as a mild case, then he started getting into car acccidents, then he needed the hand controls to drive - but he still got into accidents, so he stopped driving. He was a smoker and set his couch on fire with him in it (no joke). My mother just happened to walk into his house to check on him or he wouold have died in the fire. Ms is a terrible disease. We have a friend who also has MS. I wouldn't hunt if I were you. Not just for your safety but for the safety of other hunters as well.
Rick


----------



## TheBlackHeart88 (Jun 25, 2012)

Rich Kaminski said:


> Rob, my Uncle Tony had MS. He got it in his late 30's. It started off as a mild case, then he started getting into car acccidents, then he needed the hand controls to drive - but he still got into accidents, so he stopped driving. He was a smoker and set his couch on fire with him in it (no joke). My mother just happened to walk into his house to check on him or he wouold have died in the fire. Ms is a terrible disease. We have a friend who also has MS. I wouldn't hunt if I were you. Not just for your safety but for the safety of other hunters as well.
> Rick



In spite of your sad tales, I refuse to let MS stop or slow me down. My injections keep me very regular every week, and I run mountains (very literally) to this day since regaining the feeling in my legs. Never will I give into something that is a part of me, I will not change.  There is no danger in a man with any disability or disease to cease living his life because he/she is diagnosed. I am not in anyway a danger to society. If I ever came to that point, I would know to call it quits. I am young, I am strong, and strong willed. I know MS can be crippling, very literally. I had to reteach myself to walk, to run, to climb. But I do it. And I probably can out run, climb, lift, prayer, and shoot more then half this crowd.  This isn't cocky, this is confident in my ability, perseverance, faith, and strength. Come fall, the hunt is on. Square up.


----------



## Arrow Flinger (Jun 26, 2012)

TheBlackHeart88 said:


> In spite of your sad tales, I refuse to let MS stop or slow me down. My injections keep me very regular every week, and I run mountains (very literally) to this day since regaining the feeling in my legs. Never will I give into something that is a part of me, I will not change.  There is no danger in a man with any disability or disease to cease living his life because he/she is diagnosed. I am not in anyway a danger to society. If I ever came to that point, I would know to call it quits. I am young, I am strong, and strong willed. I know MS can be crippling, very literally. I had to reteach myself to walk, to run, to climb. But I do it. And I probably can out run, climb, lift, prayer, and shoot more then half this crowd.  This isn't cocky, this is confident in my ability, perseverance, faith, and strength. Come fall, the hunt is on. Square up.


----------



## doublebrowtine (Jun 27, 2012)

TheBlackHeart88 said:


> In spite of your sad tales, I refuse to let MS stop or slow me down. My injections keep me very regular every week, and I run mountains (very literally) to this day since regaining the feeling in my legs. Never will I give into something that is a part of me, I will not change.  There is no danger in a man with any disability or disease to cease living his life because he/she is diagnosed. I am not in anyway a danger to society. If I ever came to that point, I would know to call it quits. I am young, I am strong, and strong willed. I know MS can be crippling, very literally. I had to reteach myself to walk, to run, to climb. But I do it. And I probably can out run, climb, lift, prayer, and shoot more then half this crowd.  This isn't cocky, this is confident in my ability, perseverance, faith, and strength. Come fall, the hunt is on. Square up.





Arrow Flinger said:


>



GREAT ATTITUDEkeep huntin and doing the things you like


----------



## Dixiesimpleman32 (Jun 27, 2012)

Good luck Rob hope you have a great season.post some pics of your kills.


----------



## Rich Kaminski (Jun 27, 2012)

God bless you Rob and good luck.
Rich


----------



## Bkeepr (Jun 28, 2012)

Rob it hits everyone differently, keep exercising to stay strong and keep doing what brings you joy for as long as you can do it.  You sound like you have a good head on your shoulders and will know when to cut back.  And there is all kinds of adaptive stuff out there, too if and when you need it.


----------



## TheBlackHeart88 (Jun 28, 2012)

I do appreciate the support! I hope I didn't come across to harsh on my response, I'm just very passionate about living as "normal" as possible. Me finding good faith and belief has really made the difference for me, I know all will turn out well in the end, but I'm not giving an inch to this disease without a ******* fight! 

God bless and good hunting to all come the fall!


----------



## Arrow Flinger (Jun 28, 2012)

Did you get the OWL info I sent?


----------



## Arrow Flinger (Jun 28, 2012)

With my involvement with OWL, I have seen folks with almost every level of disabilities get to participate in hunting and fishing.  The challanges are huge for some but that does not stop them from doing what they love.  Never let anyone discourage you from it either.


----------



## TheBlackHeart88 (Jun 28, 2012)

I did recieve the emails, Thank You! I do plan to attend, definitely could find some joy in shooting arrows with other members with a challenge in front of them, a part of them!  I feel my disease to be very mild at this remissive stage, and have great hope and respect for those who continue on! 

All the best,
           Rob


----------



## Redbow (Jul 1, 2012)

TheBlackHeart88 said:


> In spite of your sad tales, I refuse to let MS stop or slow me down. My injections keep me very regular every week, and I run mountains (very literally) to this day since regaining the feeling in my legs. Never will I give into something that is a part of me, I will not change.  There is no danger in a man with any disability or disease to cease living his life because he/she is diagnosed. I am not in anyway a danger to society. If I ever came to that point, I would know to call it quits. I am young, I am strong, and strong willed. I know MS can be crippling, very literally. I had to reteach myself to walk, to run, to climb. But I do it. And I probably can out run, climb, lift, prayer, and shoot more then half this crowd.  This isn't cocky, this is confident in my ability, perseverance, faith, and strength. Come fall, the hunt is on. Square up.



My sister in law got MS when she was in her early thirties. For a few years she got along fine but honestly she kept getting in worse and worse shape with each passing year. Some have mild cases of MS but my wife's sister did not. Do what you want to do now as you may not be able to later in life. There is no cure for MS that I know of..I hope you live a long full life but my sister in law died two years ago at age 57...


----------



## TheBlackHeart88 (Jul 1, 2012)

I'm sorry to hear about your sister is law's early calling home, but however and whenever MS takes me, I will be at peace and in a much happier place where hunting season is year round in God's country    I'm a fighter all the same, I don't foresee an early death or if so, not without a serious brawl to live. I have a great Dr at the MS center in Atlanta, and again, my
Current injection meds keep me going very regular. Im a tough cookie, mind you, I went from wheelchair to running/hiking/climbing in under 6 months. 

God bless


----------



## Mistrfish (Jul 14, 2012)

Great outlook to have when you have M.S.  I dont let it slow me down to much unless its hot and humid then I dont have any choice.  Good luck, I was DX in 2006 but started having problems in 2000.   BTW, we go to the same clinic. Great people to have on your side.


----------



## auburndeerhunter (Jul 18, 2012)

Hello all! My wife was allso diag. with MS last monday. It has been a long battle and i am so glad we found out what it was so they could treat it i hope my wife will have your outlook on it and not let it slow her down!


----------



## Bow Only (Jul 19, 2012)

Ellbow is correct, over 50% of MS patients actually have Lyme Disease instead of MS.  It depends on the neural involvement and lesion location.  I would reccommend watching Dr. Thomas Rau on youtube.  Any of his seminars are beneficial.  Feel free to PM me with questions, it's an area I have studied for quite some time.


----------



## oops1 (Jul 19, 2012)

My wife was diagnosed a while back...never been more scared. CT showed a large lesion and we were told it was probably glioma... Finally found Dr. Lagank in Birmingham Al. He has been a Godsend . We are hoping the injections will stop progression but only time will tell. Her flare ups are usually stress and fatigue related. I showed her your posts and we are praying...good luck.


----------



## Jim P (Aug 13, 2012)

Rob I was dag. with MS in 1998, family and friends thought I was a gonner, but I have showed them, a person with MS gas to stay active, I still quail hunt, I'm not as fast as I use to be but heck I'm 64, you stay active and have a great season. I was also told that MS mostly effects woman, but I know a few men with MS.


----------



## Matzrig (Aug 14, 2012)

I was diagnosed in 2001 and I have been very lucky that I am still in great shape.  I have been working with the folks at the MS society for a number of years on a local and national level.  I am always after them to do more outdoor activities as most of the programs are made for clients in the metro area.  The problem is they have a tough couple years due lack of fundraising.  I am always looking for new and interesting ways to fund raise so this might be a great group to talk too.  If I were to try and put together an activity like a fishing day of a dove shoot that could raise some money would anyone be interested?  Feel free to email me with any suggestions you may have for anything else  that might be fun!  mattweil@comcast.net


----------



## Ellbow (Aug 14, 2012)

Thanks Bow Only! I know too much about Lymes, more than I wanted to but know how the symptoms can be disguised as MS. Until the Lymes is treated, the MS won't go away!

I'm going to look up this doctor on YouTube. Lymes is still a topic that most doctor's dismiss with the all to generic ELISA test because they don't know enough about it. I lucked up and got a Stanford Doctor who is a guru in her field and ran the Western Blot amongst others. It does matter upon the doctor you use but don't go HMO on this disease trust me...
El


----------



## SonyaS (Aug 14, 2012)

Bow Only said:


> Ellbow is correct, over 50% of MS patients actually have Lyme Disease instead of MS.  It depends on the neural involvement and lesion location.  I would reccommend watching Dr. Thomas Rau on youtube.  Any of his seminars are beneficial.  Feel free to PM me with questions, it's an area I have studied for quite some time.




Yeah tick born diseases are absolutely rampant in many parts of Georgia. Not just Lymes disease but Ehrlichia, Rocky Mountain Spotted Fever, etc.... Many many times they go undiagnosed.

From what little I know about MS it is very hard to diagnose, there is no definitive test. 

If I got that diagnosis I would definitely have them run a tick borne disease panel and I would find out what tbd's should be tested for. Someone that spends a lot of time in the woods would be high risk for tbd. Also the individual doesn't even have to be going out in the woods, if the husband/kids/dogs etc... are picking up ticks on their clothing and what not and coming in the house the ticks come in too, the baby ticks are so tiny no one even realizes they were bitten. We had a problem with tbd in this house, the symptoms can be utterly crippling. Much of the medical community doesn't know jack about tick borne disease, but if the right tests are run it will show up. Many many doctors don't even think to test for it (many vets don't either).

I went through a fake "terminal cancer diagnosis" and I have learned to do my own research, don't rely on the experts. TRUST NO ONE and do your own research! You pay doctors to run tests and do surgery and such, if you pay them to think for you....well....that is a mistake.  Maybe it is MS, maybe it isn't. Make sure.


----------



## Bow Only (Aug 15, 2012)

SonyaS said:


> Yeah tick born diseases are absolutely rampant in many parts of Georgia. Not just Lymes disease but Ehrlichia, Rocky Mountain Spotted Fever, etc.... Many many times they go undiagnosed.
> 
> From what little I know about MS it is very hard to diagnose, there is no definitive test.
> 
> ...



One problem we face is the ineffectiveness of testing for tick borne diseases.  At best, the tests are only 50% accurate.  There are ZERO doctors in the state of GA that are Lyme literate.  The one is Alpharetta says she treats Lyme but does she go by the 2006 IDSA guidelines?  Our government has failed us and the CDC and the ISDA should be punished for their actions (and lack thereof) on Lyme and tick borne diseases.  

Read about MTHFR mutations and the entire methylation cycle.  When we have a TBD (tick borne disease), our immune system is overwhelmed and the methylation cycle is technically "broken."  A MTHFR mutation makes it worse.  You must correct whichever part is deficient, whether it be Mg++, Mn++, or any of the catalysts in the cycle. 

Diet is the #1 healing tool.  It pains me to say, but going vegan is the best way to eat.  Green cruciferous vegetables are the key.  Mushrooms, onions, garlic, and pomegranates are also good.


----------



## SonyaS (Aug 15, 2012)

Bow Only said:


> One problem we face is the ineffectiveness of testing for tick borne diseases.  At best, the tests are only 50% accurate.  There are ZERO doctors in the state of GA that are Lyme literate.



From what I understand (I did not research Lyme specifically) the accuracy of the tests depends heavily on the lab that runs them.  Labs/doctors that specialize in TBD find things that other generalist labs can miss. Even with specialty labs they often rerun it if they think they missed something. 

As far as finding a doctor that knows what they are doing, well fortunately we all have access to the internet which means there are groups and research papers galore. From my experience the best way to get info is to join user groups, those groups always have laymen that have done extensive research for years and know more than most doctors on a particular topic, they can answer questions and provide other sources of information that would be difficult to find otherwise.  Any doctor could follow a certain protocol for tbd if you explained what you want,   just have to find one that will cooperate (easier said than done sometimes).

In this area (Jones County) tbd is quite common, both of the vets in town have had chronic cases. One had chronic Rocky Mountain Spotted Fever and could barely walk, and my vet has reoccurring problems with another one...I think Ehrlichia.


----------



## Huntress (Aug 15, 2012)

Hi Rob,
I have Chiari Malformation, and for years this was always misdiagnosed as MS, I was tested for everything under the sun before things were ruled out.  I admire your attitude to live life to the fullest while you can, never give up or surrender to what ails you till you absolutely have too.  I will not get to go shooting or hunting this year cause I am recovering from decompression surgery for the Chiari and shooting is a no no for me cause of the jarring of the body mainly the brain.  It can slump down and cause even worse problems if I don't have enough scar tissue built up to maintain what has been done.

I admire your attitude!  Stay strong and keep the faith.


----------



## Bow Only (Aug 15, 2012)

SonyaS said:


> From what I understand (I did not research Lyme specifically) *the accuracy of the tests depends heavily on the lab that runs them.*  Labs/doctors that specialize in TBD find things that other generalist labs can miss. Even with specialty labs they often rerun it if they think they missed something.
> 
> As far as finding a doctor that knows what they are doing, well fortunately we all have access to the internet which means there are groups and research papers galore. From my experience the best way to get info is to join user groups, those groups always have laymen that have done extensive research for years and know more than most doctors on a particular topic, they can answer questions and provide other sources of information that would be difficult to find otherwise.  *Any doctor could follow a certain protocol for tbd if you explained what you want,   *just have to find one that will cooperate (easier said than done sometimes).
> 
> In this area (Jones County) tbd is quite common, both of the vets in town have had chronic cases. One had chronic Rocky Mountain Spotted Fever and could barely walk, and my vet has reoccurring problems with another one...I think Ehrlichia.



Some labs are better than others but the tests still have a 50% false negative rate.  That is for Lyme, Babesia, Bartonella, RMSF, and any of the others you want to check for.  There are just too many strains of each and the tests only check for 1 or 2 strains.  

Unfortunately, the doctors won't follow any protocol.  They are regulated (more like policed) by the insurance companies and following the ILADS protocol instead of IDSA will get them a trip before the medical board.  That is why all Lyme Literate physicians do not take insurance.  It's simply politics and the insurance companies increasing profits.  I have studied this topic for years from both the professional side and from the patient perspective.


----------



## Ellbow (Aug 15, 2012)

Bow Only you are so right. Have you been able to see "Under Our Skin"? It was a documentary on Lymes concerning HMO's VS PPO's. Very controversial but I think the release was delayed for some reason. It looks like it would explain the discrepancies between the 2 types of insurance regarding Lymes and the protocol they go by.
El


----------



## Bow Only (Aug 16, 2012)

Ellbow said:


> Bow Only you are so right. Have you been able to see "Under Our Skin"? It was a documentary on Lymes concerning HMO's VS PPO's. Very controversial but I think the release was delayed for some reason. It looks like it would explain the discrepancies between the 2 types of insurance regarding Lymes and the protocol they go by.
> El



I haven't seen that one, but I've dealt with insurance companies on the matter.  My $1100 a month antibiotic was denied by my insurance and I asked them why.  When they told me, I provided evidence why they were incorrect and they paid it.  After doing this 3 times, the insurance called my Dr and basically scared him into not writing another prescription even though there was clear evidence supporting it's efficacy and I was improving each month.  They couldn't beat the literature, so they beat the doctor.  Knowing how the system works is the only way I got the authorization each month.  "Normal" people not in the medical field would not have been able to do this.


----------



## SonyaS (Aug 16, 2012)

Bow Only said:


> My $1100 a month antibiotic was denied by my insurance and I asked them why.



$1100 a month for an antibiotic? Sheesh. What was it, Vancomycin?  Most of the antibiotics used to treat TBD are fairly cheap, which is why i couldn't imagine it being that big of a deal to be on longer term therapy even if the insurance company wasn't paying for it. Now grant it the titer counts and blood work can be pricey.

And yes I watched "Under Your Skin", it was interesting but also very sensationalized in my opinion.


----------



## Ellbow (Aug 16, 2012)

Sonya, it was probably Byacillin which was what I had but luckily my insurance paid for it.....Sorry Bow you had problems...and Sonya, Under Our Skin may be "sensationalized" as you call it but there are many suffering and many who make light of their symptoms....Lymes or any other infectious disease hasn't been given the right amount of publicity or attention it needs in order to cure the ones who suffer.
El


----------



## Bow Only (Aug 16, 2012)

SonyaS said:


> $1100 a month for an antibiotic? Sheesh. What was it, Vancomycin?  Most of the antibiotics used to treat TBD are fairly cheap, which is why i couldn't imagine it being that big of a deal to be on longer term therapy even if the insurance company wasn't paying for it. Now grant it the titer counts and blood work can be pricey.
> 
> And yes I watched "Under Your Skin", it was interesting but also very sensationalized in my opinion.




Mepron

The insurance companies don't want to pay for all the testing, months of antibiotics, and sometimes long term treatments.  Most knowledgeable physicians treat with multiple antibiotics for multiple months.   It's much easier to just deny the existence of the disease in 20% of the population.  

Here's the issue.  Studies have shown that as many as 40% of the population in some areas have the Borrelia burgdorferi bacteria but only around 15% have any symptoms.  The bacteria isn't entirely the problem.  Almost all of the MS and ALS patients have the B. burgdorferi bacteria.


----------



## Tomboy Boots (Aug 26, 2012)

Rob,

I so admire your positive attitude and determination to live your life to the fullest. My partner at work has MS. She was in the military and stationed overseas when she was diagnosed at 27 yrs. old. That was 15 years ago. She ended up with a medical discharge. I also admire her. She draws a percentage of disability and she could get full disability but she refuses to give up. She works a full-time job and is an asset to the department in spite of struggling daily with the effects of MS. She is such an inspiration to me. Keep your head up, and hold on to that positive attitude and your faith in God...


----------



## RipperIII (Aug 27, 2012)

I just completed a grueling 3-day golfing/partying weekend with 40+ of my closest friends,...one of which was diagnosed with MS 2 years ago, he is 52 years old, and in fair shape, however, this weekend, you would have never known that he was afflicted, he, like you cultivates a strong positive attitude and "can do" spirit.
Good luck to you and keep it positive.


----------



## oops1 (Aug 29, 2012)

How ya holding up Rob? The wife and I just got back from Birmingham yesterday with my wife's scan showing 0 progression. The Dr.also told us about a conference he attended in Dallas this past weekend. So many advances being made. He even mentioned one drug ( in development ) that could possibly reverse lesions on the brain. Definitely some promising news. Feel free to shoot me a pm if you want anything. Hang in there man.


----------



## Bow Only (Aug 29, 2012)

oops1 said:


> How ya holding up Rob? The wife and I just got back from Birmingham yesterday with my wife's scan showing 0 progression. The Dr.also told us about a conference he attended in Dallas this past weekend. So many advances being made. He even mentioned one drug ( in development ) that could possibly reverse lesions on the brain. Definitely some promising news. Feel free to shoot me a pm if you want anything. Hang in there man.



As far as I have seen, all MS patients have Protomyxzoa rheumatica.  Lumbrokinase and a fat free diet would be beneficial.


----------



## drippin' rock (Aug 29, 2012)

Bow Only said:


> One problem we face is the ineffectiveness of testing for tick borne diseases.  At best, the tests are only 50% accurate.  There are ZERO doctors in the state of GA that are Lyme literate.  The one is Alpharetta says she treats Lyme but does she go by the 2006 IDSA guidelines?  Our government has failed us and the CDC and the ISDA should be punished for their actions (and lack thereof) on Lyme and tick borne diseases.
> 
> Read about MTHFR mutations and the entire methylation cycle.  When we have a TBD (tick borne disease), our immune system is overwhelmed and the methylation cycle is technically "broken."  A MTHFR mutation makes it worse.  You must correct whichever part is deficient, whether it be Mg++, Mn++, or any of the catalysts in the cycle.
> 
> Diet is the #1 healing tool.  It pains me to say, but going vegan is the best way to eat.  Green cruciferous vegetables are the key.  Mushrooms, onions, garlic, and pomegranates are also good.



I agree with the diet.  Conventional Wisdom(an oxymoron?) goes with meds, but who gets cured from MS with meds?  Here is some reading on the matter....

http://www.drmcdougall.com/med_hot_ms.html

http://www.drmcdougall.com/stars/donna_mcfarland.htm


http://www.drmcdougall.com/stars/050812tasic.html


----------



## Bow Only (Aug 29, 2012)

drippin' rock said:


> I agree with the diet.  Conventional Wisdom(an oxymoron?) goes with meds, but who gets cured from MS with meds?  Here is some reading on the matter....
> 
> http://www.drmcdougall.com/med_hot_ms.html
> 
> ...



The reason why these people are diagnosed with MS is because the physicians don't know any better.  They see the demyelination and automatically say MS.  That's not always the case.  MS affects motor functions and if there are any neurological issues (memory loss, speech issues, etc) that would not be MS.  That's vector borne.  With that said, about 100% of MS patients have FL 1953.  It's biofilms slow cerebral blood flow and with a weakened immune system, the demyelination can occur.  I read a report from Italy that dealt with angioplasty for MS patients and their temporary relief.  It simply removed the biofilms and they gradually grew back.


----------

