anutter Newb here - just have been diagnosed

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anutter Newb here - just have been diagnosed

Postby rrossen » Fri Jul 27, 2012 9:58 am

Hello everyone!
I have just been given the information, based upon brain/MRI this past Tues, that I have MS. Oh yea. A very strange sorta 'relief' at this point cause it explains SO Much about the last 15 years of silent and totally futile battle - and like so many others that I've been just reading about now for the last couple of days...wow. And i am definitely not the kinda person who has 'kept all of this in' over the years, but I might as well have, given the responses I have gotten, both from medicos and family/friends.

I'm now going through the 'doctor bureaucracy' just to get a neurologists scheduled to proceed with things. So past couple of days have been rather mindboggling (i.e. waiting and getting paranoid with initial internet info). But guess I now have a better excuse for being boggled at all. Yes I have very sick sense of humor, but it gets me through...

The reason this came up at all, was because last week I awoke with left arm totally useless, along with some slur in my speech, and it didn't fix itself, so went to Dr this Tues where he scheduled emerg MRI and got the results by suppertime. So it's been internet/R+D time ever since and I now have quite a bit of great info, giving me at least a good head-start (I think?!). Just impatiently waiting now to see if at all the referred group at neuro hospital - Froedtert - in Milwaukee - are hip to CCVSI which is sounding to me like the only way to begin this journey effectively and perhaps along with the LDN good news.

Anyone have any info here?

I have had so many historical episodes, that I'm now only beginning to piece together things that are making some sense to me now: like divorce from hell (yes, I apparently married Satan herself) who has succeeded in making me bankrupt, so a primary concern of mine now is the potential medical coverage of the 'newer/alternative' solutions which are very often murdered by the big, evil Pharmos. I have just realized that the divorce-and subsequent 5-years in court which is still going on, that a large part of it was due to her complete un-acknowledgement of my symptoms over the years, which I was, until now unable to explain to her. Well that's a done deal if ever there was one, so it's not like I'm bumming about it now. Its just that she has actually used my symptoms, to convince her lawyer and the judge (and anyone else who'd listen: friends family) that I'm a complete idiot. I can't even see my daughter on any regular basis - about 3-4 times a year. So I can totally feel for ANYONE, who has had their own version of this and having to live through it all.

BTW: I also have now about 8 years 'experience' with diabetes since being diagnosed (yes: why have only ONE life changing, debilitating disease?) so I have a pretty good handle on how messed the 'health-care' system is, yet am wholly behind alternative/holistic approaches while yet also realizing poss benefits of tried and true (traditional) medicine. Just very leary of these days. Even though I have now found the best possible definition of Diabetes: "A VERY large, multibillion dollar business", I do believe there are those within the structure who care and are good folks. Just hopefully not too well indoctrinated into the mind-numbing spectacle that is our current healthcare system here in the USA. Yet I must say probably better than many other places on this rock.

Sorry, I don't mean to be too dismal here upon my introduction, but I'm thinking this site, to some degree, is based upon and because of: the confusion of this 'system'. Which at it's best, is just plain indecipherable - and at it's worst: good folks die, or are on meds that will get them there quicker.

As I am primarily a musician and artist, my now absent left arm/hand has me freaking out. Not seeing much point to being around if I can't make stuff. I'm also an electronic engineer. Had to cancel this weeks trip due to above, but am trying to ascertain if I can even work now, thinking my arm is going to come back at some point...? No good answers yet from the 'professionals', but I guess I really need to give myself some time here to absorb things...typing, is now a challenge.

It is really nice to know this site exists! Thank you to all who make it what it is. I look forward to future communications and probably to the point of some wishing I'd just shut up.

Cheers and Best to all,

Rog
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Re: anutter Newb here - just have been diagnosed

Postby jimmylegs » Fri Jul 27, 2012 4:09 pm

hi rog and welcome. sorry to hear your tale :( no fun at all.

anyway i can help with the nutrition side, so if you have any questions along that line, fire away. if you like, you can do some reading using my 'signature' links.

again, welcome, and take care :)
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Re: anutter Newb here - just have been diagnosed

Postby rrossen » Fri Jul 27, 2012 4:55 pm

Thanks Jimmy -i will check out and do appreciate your response.

R
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Re: anutter Newb here - just have been diagnosed

Postby jimmylegs » Fri Jul 27, 2012 5:07 pm

hey no probs :)

fyi 'my regimen' (first post one page one) is probably more updated/thorough than 'nutrition first'
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Re: anutter Newb here - just have been diagnosed

Postby lyndacarol » Fri Jul 27, 2012 5:26 pm

Welcome, Rog. You have certainly had a rough start. I offer my standard action plan recommendation:

First, take a deep breath. You have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, if you have difficulty finding a neurologist/MS specialist, work with a GP with whom you are most comfortable, who is compassionate and who enjoys being a "disease detective." I have found an interested generalist to be more valuable than many specialists. Begin with a thorough baseline examination including blood tests for your cortisol level, glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, etc. Ask for a copy of all your test results for your own file.

Third, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS and CERTAINLY with diabetes – type II diabetes, I am sure). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. I suspect that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

We are glad that you found us; we look forward to your participation and questions. By the way, symptoms very often come and go – I see no reason for the function of your left arm/hand not to come back at some point. Ask your physician about insulin resistance in skeletal muscles as the possible cause.

And if typing becomes a challenge, look into the speech-recognition programs, such as Dragon NaturallySpeaking.
All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: anutter Newb here - just have been diagnosed

Postby rrossen » Sat Jul 28, 2012 9:13 am

Thanks for the good words Lynda. I'm definitely going to be checking into the diabetes info you have. Funny thing with me is: I started off as type II but now seem to have wandered into being type I, or what some docs have said is more like type I-1/2...? Just got on an insulin pump at beginning of year and my G levels are now way down. A1C was like 5.8 when at docs this past week - so that has been sorta a miracle for me. But mainly my problem is no appetite and losing too much weight the last couple of years. I can eat if I'm at a favorite restaurant, etc...but otherwise it's not at the forefront of my mind and often have 1 meal a day. And this is problematic with my better half, who is like a cooking maniac, constantly in the kitchen making this or that new recipe. So she's rather concerned about me.

But, thanks again for providing some great info here which I'll be checking into, especially the tests which I'll be inquiring about when I can find a decent neuro here, at least to get me started with my own personal 'testing regime'.
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Re: anutter Newb here - just have been diagnosed

Postby lyndacarol » Sat Jul 28, 2012 1:27 pm

rrossen wrote:...Funny thing with me is: I started off as type II but now seem to have wandered into being type I, or what some docs have said is more like type I-1/2...? Just got on an insulin pump at beginning of year and my G levels are now way down. A1C was like 5.8 when at docs this past week - so that has been sorta a miracle for me. But mainly my problem is no appetite and losing too much weight the last couple of years. I can eat if I'm at a favorite restaurant, etc...but otherwise it's not at the forefront of my mind and often have 1 meal a day. And this is problematic with my better half, who is like a cooking maniac, constantly in the kitchen making this or that new recipe. So she's rather concerned about me.

But, thanks again for providing some great info here which I'll be checking into, especially the tests which I'll be inquiring about when I can find a decent neuro here, at least to get me started with my own personal 'testing regime'.


I have another friend with long-standing MS who was recently diagnosed with, first, type II diabetes, now, diagnosed with LADA or what some doctors are calling type I.5 diabetes. At 5.8, your A1C is great. My friend is taking metformin; have you discussed this therapy with your physician? It may not be appropriate for your case. We have a member (username: Leonard) who strongly suspects there is a link between MS and diabetes; he posts often, and thinks that metformin would be helpful. To find his posts, perform a "search" from the buttons in the upper right-hand corner of this page.

I understand your line, "my problem is no appetite," PERFECTLY well – I have not had an appetite for YEARS! Also… If your physician will work with you and include blood tests to establish a baseline, check with jimmylegs for her recommendations; many such as vitamin D3 and the CRP (C-reactive protein) tests are currently in the spotlight.
Last edited by lyndacarol on Sun Jul 29, 2012 9:48 am, edited 1 time in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: anutter Newb here - just have been diagnosed

Postby rrossen » Sun Jul 29, 2012 9:32 am

Actually I was initially taking Metformin and some other one (2005?) and then got freaked out because of some oral diabetes meds that were being pulled from the market, so I decided not to take any of those again. Yet I will discuss again with doc when I can get lined up with one. And will be checking further into the MS/Diabetes link possibility. Whats sorta freaking me out now is it seems that there are soooo many potential 'links' out there - plus I seem to fit the model of being every one of them - that from previous experience it only boggles the medical folks and you never really seem to get anywhere. But I'll be starting somewhere I suppose.
Thx
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Re: anutter Newb here - just have been diagnosed

Postby jimmylegs » Tue Jul 31, 2012 9:54 am

one of my stepdaughter's signs of zinc issues, other than chronic infection, was her lack of appetite and weight loss. when i was finally able to arrange testing, her zinc level was crap. once we got her on a supplement regimen her zinc levels improved (so much easier to get follow-up testing, seems like if testing is going to be a hurdle, it's the first one that's the worst), her appetite improved, and she was able to get back up into the healthy BMI range. so of course i recommend a serum zinc test :)
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Re: anutter Newb here - just have been diagnosed

Postby TigerEyes19 » Thu Aug 16, 2012 2:05 pm

Hey Rog, my name is Nicole. I too, have recently been diagnosed. Your wicked sense of humor makes me smile, so...

Never shut up! We all need to be heard. ROCK ON dude!!!
RRMS Dx - 5/15/2012 ; Copaxone since - 8/15/2012
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