new guy looking for starting advice.

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new guy looking for starting advice.

Postby shucks » Mon May 09, 2011 5:25 am

I am a complete newbie, and read the newbie sticky, and don't want to do anything wrong, but this is the first ms group I've joined.
I had ON in 2004, and an neuro-ophthalmologist told me it was a bad case, but it should resolve its self without treatment. I was a first year law student and didnt have insurance, so nothing was cool with me. Fast forward to a couple months before my 30th birthday, december 2010 I get up to go duck hunting one morning and though it's cold, my left foot never thaws out. With in a week or two, it was in my right foot, and has now climbed my trunk to my mid chest. I notice lherrmitte's too. As an avid outdoorsman, my dr. tells me at that time that it has to be spinal, but to rule out ms I need to have an MRI of my brain. It comes back clear. He decides to get the entire spine a couple months later, and that one comes back as a single lesion "characteristic of MS".
My doc sends me to a spinal specialist, who sends me to a neuro that he deals with a lot. This has been a six month process and now my fingers are numb too. This neuro tells me that it is ms, but only in my spine. He sees what he believes to be 3 or 4 other lesions throughout my spine, and none on my brain. My ON eye still bothers me for a week or so a year, but I still seem to have all of my strength on the numb limbs. My NMO test has been out for 2 weeks and i'm scared to death.
Are there any studies in relation to NMO and ms and treatment? If what I have is MS, that has progressed steadily over 6months, is now the time to get treated and tested for ccsvi if it's going to happen, or do I need to start a DMT?
I know this is long, but I'm in the middle of freaking out and I am not confident in any local neuros, and am scheduled to leave my home in Myrtle Beach to go to Duke for a second opinion at the end of the month.
Any advice as to where I go from here would be great. I have spent 6months lurking and being upset, which is really not me. I'm a 6'6" 300lb "Manly Man", attorney, and I have spent the last 6 months freaking out and half crying myself to sleep like a middle school girl.

What do I do next?

Any advice would be welcome.

Thanks guys.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby daverestonvirginia » Mon May 09, 2011 6:22 am

The one thing I have come to believe over the years is that if it sounds like MS it mostly over time will turn out to be MS. So what do you do? Having MS does not have to be the end of the world, it hasn't been for me. I would tell you to take you time, do the research decide if you want to try diet, vitamin's (D), meds, or all three. Doing something is the best thing, the earlier you start the better. I was dx over five years ago and after my first symptoms I have had no MS symptoms since. I am on Copaxone, Bset Bet Diet and suppliments. Good Luck
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Re: new guy looking for starting advice.

Postby HarryZ » Mon May 09, 2011 7:11 am

What do I do next?

Any advice would be welcome.

Thanks guys.


Shucks,

First of all, welcome to the forum. You will find a lot of good information here. What you do with it, of course, is your decision.

I don't have MS, my wife did for 36 years before she passed away over 3 years ago from other complications. I saw first hand what the frustrations of this disease can do to people. I can understand the feelings you have at the moment.

My first suggestion is have your neuro recommend the closest MS clinic. He/she may or may not think this is necessary but I have learned over the years that all neuros are not created equally and when it comes to MS, you should go to the experts as opposed to a neuro who may have some MS patients. MS is a very hard disease to diagnose and there is no one test that can do this. It is usually a combination of clinical symptoms, MRI and possibly a spinal tap to determine if you do indeed have MS. And even then you sometimes hear of misdiagnosis at this point. Some patients get diagnosed quickly while others take a few years to do so.

Once you do have a diagnosis, you will be presented with a number of treatment options. Choosing which one is the difficult part because what may help one patient does absolutely nothing for the next one. Some neuros have their favorites while others may give you the information available and ask you to choose which one you want.

I would certainly look at having your jugular veins checked for CCSVI. The liberation treatment is quite new and there hasn't been a lot of research done yet in this area. As of now, there is not enough scientific evidence that it works but there has been a lot of positive anecdotal reports for it. Again, it has done wonders for some but nothing for others.

Most neuros will want you to start on one of the approve drugs for MS....referred to as a CRAB (Copaxone Rebif, Avonex or Betaseron) of Tyasbri. As well, there are the new orals, Gilineya and one other which is about to get approved soon. But be aware all of these drugs are powerful immune system altering medications and can have a lot of nasty side effects.

Do your research, ask a lot of questions and then make an informed decision. There are a lot of MS patients on this forum and they will be glad to tell you of their experiences in helping you choose what direction to follow.

Best of luck.

Harry
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Postby patientx » Mon May 09, 2011 7:55 am

Shucks wrote:Are there any studies in relation to NMO and ms and treatment?

I think it's pretty important to determine if you might have NMO as opposed to MS. While I don't know a whole lot about NMO, from the little I have read, the treatments are different. For example, I don't think the standard MS DMDs help with NMO. If you get further along with this, there is a least one member of MSWorld who has NMO, and it quite knowledgeable about it, and the differences with MS:

http://www.msworld.org/forum/forumdisplay.php?f=4
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Postby patientx » Mon May 09, 2011 7:56 am

HarryZ wrote:I would certainly look at having your jugular veins checked for CCSVI. The liberation treatment is quite new and there hasn't been a lot of research done yet in this area. As of now, there is not enough scientific evidence that it works but there has been a lot of positive anecdotal reports for it. Again, it has done wonders for some but nothing for others.

Most neuros will want you to start on one of the approve drugs for MS....referred to as a CRAB (Copaxone Rebif, Avonex or Betaseron) of Tyasbri. As well, there are the new orals, Gilineya and one other which is about to get approved soon. But be aware all of these drugs are powerful immune system altering medications and can have a lot of nasty side effects.

I notice you don't mention about the nasty side effects of liberation treatment, or the fact that Tysabri has done wonders for some.
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Postby HarryZ » Mon May 09, 2011 8:11 am

I notice you don't mention about the nasty side effects of liberation treatment, or the fact that Tysabri has done wonders for some.


Well, I could have included a point by point summary of everything I mentioned but didn't think I should write a short novel at this time.

Liberation treatment for MS has had very little research done on it and the side effects would have to be treated as anecdotal at this time, the same way any benefits would have to be treated.

The CRABs and Tysabri have all kinds of information on them that is available to a potential user. I did mention that all of these treatments work for some and don't work for others. Let's not create controversy here where none should exist for Shucks.

Harry
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Re: new guy looking for starting advice.

Postby scorpion » Mon May 09, 2011 8:33 am

shucks wrote:I am a complete newbie, and read the newbie sticky, and don't want to do anything wrong, but this is the first ms group I've joined.
I had ON in 2004, and an neuro-ophthalmologist told me it was a bad case, but it should resolve its self without treatment. I was a first year law student and didnt have insurance, so nothing was cool with me. Fast forward to a couple months before my 30th birthday, december 2010 I get up to go duck hunting one morning and though it's cold, my left foot never thaws out. With in a week or two, it was in my right foot, and has now climbed my trunk to my mid chest. I notice lherrmitte's too. As an avid outdoorsman, my dr. tells me at that time that it has to be spinal, but to rule out ms I need to have an MRI of my brain. It comes back clear. He decides to get the entire spine a couple months later, and that one comes back as a single lesion "characteristic of MS".
My doc sends me to a spinal specialist, who sends me to a neuro that he deals with a lot. This has been a six month process and now my fingers are numb too. This neuro tells me that it is ms, but only in my spine. He sees what he believes to be 3 or 4 other lesions throughout my spine, and none on my brain. My ON eye still bothers me for a week or so a year, but I still seem to have all of my strength on the numb limbs. My NMO test has been out for 2 weeks and i'm scared to death.
Are there any studies in relation to NMO and ms and treatment? If what I have is MS, that has progressed steadily over 6months, is now the time to get treated and tested for ccsvi if it's going to happen, or do I need to start a DMT?
I know this is long, but I'm in the middle of freaking out and I am not confident in any local neuros, and am scheduled to leave my home in Myrtle Beach to go to Duke for a second opinion at the end of the month.
Any advice as to where I go from here would be great. I have spent 6months lurking and being upset, which is really not me. I'm a 6'6" 300lb "Manly Man", attorney, and I have spent the last 6 months freaking out and half crying myself to sleep like a middle school girl.

What do I do next?

Any advice would be welcome.

Thanks guys.


Welcome Shucks! As on any internet blog you will find may different people with lots of different opinions! What I suggest is talking to your primary doctor/neurologist about all the possible treatments that are available and hopefully once you understand the risks associated with each treatment you can make an educated choice! Thisisms is a great site to come to for support but you will read that MS can be cured using anything from grape extract to shamans(well maybe that is a stretch!). I also agree with patientx that the first step really needs to be finding out if you have MS or NMO. The worst part,I would assume, is not knowing exactly what the true nature of the problem is but once you get a firm diagnosis I think you will accept it and adapt to the limitations it places on you. However, and this may sound crazy now, with any changes you experience in life you can choose to either run from them or grow from them. Because of my diagnosis I live each day to the fullest and plan on doing this to the end (whether it is one day from now or 40 years from now). Prior to my diagnosis I assumed I was going to live forever and was kind of "walking through the motions" but not anymore. Good luck man and keep us posted.
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Postby civickiller » Mon May 09, 2011 9:50 pm

I think that since it's only in your spine, I would go to a Upper Cervical Dr. to see if you need Upper Cervical Care. It's a relatively cheap thing to check out that might help
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Postby shucks » Tue May 10, 2011 5:35 am

I've never heard of an upper cervical dr. That sounds like it might work. I went to a spine specialist out of the gatew, and he told me that nerves were a neurologist's job, and spine bones and discs were his. My response was "your sign says spine institute and these things are in my spine, what do I do?" He told me to talk to a neuro. He reccomended the one I went to, and while the spine guy was really nice and seemed way competent, this neuro sprnt 10 minutes of my meeting with me telling me how the low carb diet I'm on is going to cause a heart attack, and went out of the room to look at my MRI's, then came back and said "you either have MS or NMO, we'll get a blood test and call you with the results." Then he told me to come back having researched and figure out which medication I wished to take for it. I asked him about cssvi, as I had read of it, and he told me it has only work for one person in all of what he has read after a year. He then sent me on my way and kept a hundred bucks of my money on top of my insurance. His nurse wouldn't let me stand up while he talked to me, as I am a really big guy and I made him nervous.

He seemed to be a pretty good guy, and maybe I caught him on a bad day or something, but he didn't instill the most confidence in me. I'm hoping the lady at Duke will be better. I was originally supposed to meet with her boss, but I couldn't get in before July. this Neuro is an MS specialist and I have read about her online some. I'm really hoping to get my head clear before monday, as I have a really big trial starting. This site has been hugely helpful so far in clearing the head. Thanks for all of the advice, and please keep it coming.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby HarryZ » Tue May 10, 2011 6:14 am

He seemed to be a pretty good guy, and maybe I caught him on a bad day or something, but he didn't instill the most confidence in me. I'm hoping the lady at Duke will be better. I was originally supposed to meet with her boss, but I couldn't get in before July. this Neuro is an MS specialist and I have read about her online some. I'm really hoping to get my head clear before monday, as I have a really big trial starting. This site has been hugely helpful so far in clearing the head. Thanks for all of the advice, and please keep it coming.


I doubt that you caught him "on a bad day." While that could be possible, his mannerism with you is likely how he treats his patients. Not good. Having participated on various MS internet forums for some 10 years now, I have read far too many similar incidents which you have described.

Going to see the MS specialist at Duke is a very good idea. At least you'll be able to compare how each one treats you. Please keep us advised on how things go.

Harry
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Postby civickiller » Tue May 10, 2011 12:06 pm

All the nerves for body runs down your spine. Check out the ccsvi forum and the thread, ccsvi and ccvbp and talk with uprightdoc. I am seeing a ucc dr and the benefits I saw was my heat intolerance vanished, better walking, balance, and energy level. But every person is different

where do you live ?
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Postby shucks » Tue May 10, 2011 12:17 pm

I'm in Myrtle Beach, SC
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Postby civickiller » Tue May 10, 2011 1:06 pm

Check nucca.org but in Myrtle beach I found Dr. Goodman but there are other dr's in SC

http://www.goodmanchiropracticmb.com/
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Postby shucks » Sun May 22, 2011 3:35 pm

So tomorrow i go for my appointment with the ms specialist at duke to get my second opinion. I am compiling a list of things to discuss with her, and where to go from here. Any advice on any issues to take up with her would be greatly appreciated. Right now, I am intending to ask her about ccsvi, the beam protocol, campath, tysabri, and galenya specifically. I am still freaking out, as I notice something that gets worse every day. If I can find a way to get into a trial for the beam protocol, I wonder if my insurance will help? I have pretty good insurance, but the stem cell stuff is still experimental.

Please let me know what you guys think are the best issues to bring up.

Thanks.
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Postby scorpion » Sun May 22, 2011 4:42 pm

shucks wrote:So tomorrow i go for my appointment with the ms specialist at duke to get my second opinion. I am compiling a list of things to discuss with her, and where to go from here. Any advice on any issues to take up with her would be greatly appreciated. Right now, I am intending to ask her about ccsvi, the beam protocol, campath, tysabri, and galenya specifically. I am still freaking out, as I notice something that gets worse every day. If I can find a way to get into a trial for the beam protocol, I wonder if my insurance will help? I have pretty good insurance, but the stem cell stuff is still experimental.

Please let me know what you guys think are the best issues to bring up.

Thanks.


Have you figured out what kind of MS you have yet? I would also suggest, if possible, to take someone else with you to the appointment because the amount of information you receive can be overwhelming. Also, without getting into the validity of CCSVI, you may want to bring some information on CCSVI for your doctor because although it may seem the world has heard of CCSVI it is generally not accepted by mainstream medicine so it is very likely the specialist at Duke has never heard of it( although I could be wrong).
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