Officially diagnosed, I think

New members should feel free to introduce themselves here

Officially diagnosed, I think

Postby melko321 » Mon Aug 19, 2013 5:53 am

Hi all,

I've already posted here a few months ago, back then I wasn't yet completely sure I had MS (typical denial) but now there is no more room for doubt. Every test I've done confirmed something was amiss, and the LP results I got today sealed the deal. Like everyone else, I've done my research on MS, I guess you could say I was obsessed by it, but something still eludes me so I thought perhaps you could help. It is mostly some things that in my opinion contradict themselves.

Firstly, in spite of every test being positive, I am still not given any drugs other than D3 vitamin, and they've scheduled me another appointment with a neuro in 2 months. I understand that they want to be sure, but isn't this enough?

In that respect, I am still not fully clear with the terms "Probable MS" vs. "Definite MS". If I've understood the revised McDonald criteria correctly, then I already meet the conditions for the Definite MS diagnosis (some deja vu episodes of near fainting a year ago which I guess count as the first episode and then ON a few months ago. Also, lesions on 2 places on the CNS - the brain and the optic nerve). On some sites it says that with all these evidence I "have definite MS", on others that I "will develop MS in _____ years". If these latter sites are correct, then how does it feel when you finally develop MS? Right now I am not fatigued, I generally feel OK, except for some libido issues.

Another thing that puzzles me is this - my MRI showed some evidence of brain atrophy. On some sites I've read that this is normal even in early stages of MS , but on other sites I've read that this is an indicator that my MS will progress more rapidly than...someone who does not have clear evidence of atrophy, I guess. Could anyone shed some light on that matter?

Finally, (and thank you for still reading) some experts say that I should avoid the sun because higher temperatures trigger MS episodes, then again my GP says that I should sunbathe in order to acquire D vitamin.

So here are my questions in short:
1. Should they have started me on a DMD already (which I've decided to accept even though there is s*** evidence that they are any good) based on the MRI, the LP, the tilt test, the symptoms.
2. What is definite MS? Do I have it or am I only about to get it pretty soon?
3. Does atrophy mean I'm screwed more than usual?
4. Should I lay in the Sun or hide from the Sun?

Thanks in advance to everyone, you are truly bigger experts than most experts, from what I've read.

PS, if there is a post that I have not run into (and I have read many) that already answers my questions, just post a link, no need to write it all over again.

Thank you.
melko321
Family Member
 
Posts: 41
Joined: Tue Mar 19, 2013 1:02 pm

Re: Officially diagnosed, I think

Postby MarkLavelle » Mon Aug 19, 2013 4:02 pm

1/2. I have no idea why you haven't been officially diagnosed as having MS, and really no one can answer that but your neuro. Have you asked? If/when your neuro does say you have RRMS (as opposed to PPMS), it would be *extremely* unusual for them to fail to offer a DMD.

3. Your brain atrophy might have nothing to do with MS, and I would be highly suspicious of anyone who claimed that atrophy indicates anything specific about MS progression.

4. The only reasons to avoid sunlight are skin cancer and CNS symptoms caused by overheating. If heat doesn't cause *actual* problems you should definitely maximize your time in the sun.

RRMS dx 3/3/11; Copaxone since 12/1/11
MarkLavelle
Family Elder
 
Posts: 178
Joined: Sat Dec 17, 2011 9:08 pm
Location: San Francisco Bay area

Re: Officially diagnosed, I think

Postby bartman » Mon Aug 19, 2013 4:51 pm

I sure hope you know about Lyme disease, which mimics MS. There is no such think as having a positive MS test, as there is no test for MS. There are in fact test for Lyme disease that miss 60%, they are not accurate. Your safest bet is minocycline which treats both MS and Lyme and is cheap, safe and easy to take. The fact that your doctor won't treat you with anything but vitamin D3 is a blessing because MS meds suppress your immune system and if you have an infection would help disseminate it throughout your body. Learn and educate yourself about Lyme and coinfections and then find a lyme doctor. Today, the CDC admitted there are over 300,000 cases per year!!! That is 10 times what they had been saying, and that doesn't include the misdiagnosed people. There is probably double that amount!

Ask your doctor about minocycline and tell him it covers you for both. Then do your research because it will take a long while to get well and require a combination of antibiotics. A person with Lyme can have the exact same MRI with lesions as a person with MS.

Stop worrying about the MS jargon, it's a bunch of BS. Your neuro probably isn't prescribing DMD because his conscience is getting to him as it will for all neuro's. The amount of people misdiagnosed with MS is staggering and the consequences are terrible. The CDC acknowledgment of 300,000 cases per year from
30, 000 is the first step. Do your research, learn about lyme, bartonella , babesia and cpn and stay away from steroids and MS meds (which don't work anyway).

If your doctor is caring he should have no problem giving you minocycline. However, be prepared for a herxheimer reaction.
User avatar
bartman
Family Elder
 
Posts: 140
Joined: Mon May 02, 2011 3:00 pm

Re: Officially diagnosed, I think

Postby melko321 » Tue Aug 20, 2013 2:54 am

Thanks for the responses.

MarkLavelle,

I didn't get to ask my neuro, unfortunately. Let me explain more thoroughly. I went for a full neurological exam some 3 weeks ago after cancelling twice before because of my job (stupid of me, I know), and when I finally got there I expected some sort of a conversation with a neurologist after the tests. Instead, the experience was closer to being in an automatic factory, the doctors come in, do their exams (touch the tip of your nose, for example), send me to some other tests (tilt test, EVP), then the LP, then I was sent home and told that I will receive the results by mail. I got them yesterday, and in fact it does state that this is a case of "idiopatic inflammatory condition of a relapsing-remmiting multiple sclerosis type". (I'm from Croatia, so I'm translating this as best I can). So I suppose I am officially diagnosed, the part that surprises me is that under the heading "Th" (therapy) instead of some DMD,all they prescribed was D3 vitamin. Also, I am to report to them again in 2 months for control, and in the meantime schedule another MRI.
Perhaps I will have that conversation with a neuro then, but in any case I feel they should have started me on something already, and I fear that, since my country is in financial trouble, I would not even get a DMD. Would this be enough to get a DMD in your country or would your doctors wait for another MRI that would show new lesions?

As for atrophy, here is a link just to show that I 'm not speaking out of my a**. :)

http://www2.rsna.org/timssnet/media/pre ... cfm?ID=668

I suppose it is a relatively new find. I will certainly express my doubts to my neuro, like you say, provided that I ever get to have a talk with her.

Finally, thank you for clearing up the sunshine predicament for me. I do not seem to have any trouble being in the sun for now, so I will try to spend more time sunbathing while I still can.

bartman,
I have run into the Lyme disease theory myself, although I didn't know about minocycline, so thank you. Like atrophy, I will ask my doctor about this too, as soon as I get a chance. I will certainly not start any DMD's if I even get them until I've made sure that Lyme is ruled out (at least to the best it can be).

Any advice as for what to do in the meantime? Until my next appointment with the neurology department, I mean. There are so many theories about diet, exercise, DMDs, I don't know where to start. Also, it is so discouraging to read that you could be doing all that for no reason, since none of it is proven to work.
melko321
Family Member
 
Posts: 41
Joined: Tue Mar 19, 2013 1:02 pm

Re: Officially diagnosed, I think

Postby want2bike » Tue Aug 20, 2013 5:31 am

Vitamin D is the sunshine vitamin and some people find it helpful in fighting MS. It is best to get it from the sun if you can. Posting a couple video's on the importance of vitamin D. Dr. Bergman does a good job of explaining how to treat MS without the use of drugs.

http://www.youtube.com/watch?v=yhUuf2QZd_E

http://www.youtube.com/watch?NR=1&v=F9N ... =endscreen

http://www.naturalnews.com/027345_Vitam ... e_sun.html

http://www.youtube.com/watch?v=zGmyUppmt-g
want2bike
Family Elder
 
Posts: 713
Joined: Thu Sep 15, 2011 9:15 am

Re: Officially diagnosed, I think

Postby melko321 » Tue Aug 20, 2013 7:21 am

Thanks for your input, want2bike. I must admit that I am usually skeptical about news like these, it is clear that Vit D passes all the tests they throw at it.
Unfortunately, like you said, and like everything in MS, it helps some people, to some extent. I sure hope I am among those people. Time will tell.

I will certainly take vitD seriously, along with diet, exercise, but I will use a mainstream drug as well, if offered. I know they don't generally do much, but it will FEEL like I am doing something. For instance, I know that the amount of lesions does not correspond with disability, but I will sure feel better if they tell me that for instance Copaxone is keeping new lesions at bay.

Thanks again for your response!
melko321
Family Member
 
Posts: 41
Joined: Tue Mar 19, 2013 1:02 pm

Re: Officially diagnosed, I think

Postby melko321 » Tue Aug 20, 2013 9:30 am

Hey guys, could you help me again regarding d3 vitamin? It says to take 15 drops of the thing, or 3000 u.i. IN THE DAYS OF NO SUN/SUNBATHING (whatever this means). This part confused me,so I went to my GP, and she is confused as well. I am bound to catch some sun walking every day, does that count? Should I take this dose only in winter? Should I take anything on the days that I do sunbathe?

Sorry to keep asking stupid questions, but I did try the GP first, so please no hard feelings.
melko321
Family Member
 
Posts: 41
Joined: Tue Mar 19, 2013 1:02 pm

Re: Officially diagnosed, I think

Postby grandsons4 » Tue Aug 20, 2013 9:57 am

Sunshine (the UVB part) produces Vitamin D via reaction with the cholesterol in our skin, and some subsequent conversions involving the liver and kidneys. (It is now D3, the type of D you want to supplement with.) If you get enough D from the sun (10, 000 - 30,000 IU's/15 to 30 minutes of full body midday cloudless summer sun, by some estimates) you don't need to supplement, hence the DAYS OF NO SUN/SUNBATHING caution. You need to safely build a tan, though; research it! Some studies suggest a safe, tolerable upper limit of 40,000 IU's/day. In my opinion, 5,000 - 10,000 IU's/day seems reasonable; research this too. The little bit on your face as you walk would not make a significant contribution. P.S. I almost considerate it obscene that your GP didn't make the vitamin D-sunshine connection. Good luck.
grandsons4
Family Member
 
Posts: 65
Joined: Wed Aug 14, 2013 7:43 pm

Re: Officially diagnosed, I think

Postby melko321 » Tue Aug 20, 2013 11:11 am

Oh, no,no, we both understood the connection of vitamin D and sunshine (it's common knowledge), it was just that we didn't know the specifics, i.e. if they meant that I should use the drops only on cloudy days, days I don't go out , if the sunshine I get simply by walking makes a difference etc.
You have cleared this up for me (and my GP) , so thank you very much.
melko321
Family Member
 
Posts: 41
Joined: Tue Mar 19, 2013 1:02 pm


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service