*UPdate* Visit with New Neuro Doc

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*UPdate* Visit with New Neuro Doc

Postby tt89 » Mon Aug 25, 2008 5:40 pm

:? Ok as if I was not already confused enough about this MS since my Dx in Feb of this year!

I met with the new Neuro Doc ( Duke). Very nice doctor. He took alot of time with me which I greatly appreciated. However I left saying to myself "Who's right?" My first Neuro Doc or this one. He didn't seem to agree with much of anything that he saw in the records I brought him from my 1st Neuro Doc. For example, he was not impressed with what he saw on the MRI. He said the main spot/lesion my old Neuro is harping about is not one that would concern him as much as the lesion on the left side of my head. He also didn't seem to like the MG's of medication they were putting me on to start with. He felt they were too high and that coupled with the Betaseron I was on at the time.

He was especially upset when I initially went to the E.R. when I had my first attack and they treated me for a seizure and I had to wait to get into my Neuro Doc. He could not believe they sent me home with seizure meds and didn't even consult Neuro in the E.R or even do an MRI. They did a CT only which of course is useless for MS. I was having vicious electrical shock attacks right in front of their face that clearly were not seizures and they did nothing and that seem to really get to him.

However the thing that left me upset was that he said he felt that as sick as I am day in and day out ( even though I'm still working fulltime) he would lean on thinking I'm not a case of RRMS but rather a little more progressive even though my neuro checks were great but he said based on how sick I am, how much trouble I have with pain/stiffness and all and some days I'm holding the wall to balance myself and walk, he felt it might be more than RRMS but you can't really be given a certain test to determine that. He did said that based on what I told him that I have probably had 2 relapses since being diagnosed and that I did the right thing to call my doctor but they dropped the ball telling me to watch the symptoms a few days and call back ( that is the clinic I used to go to which has too many doctors and way to many patients). He said right then they should have jumped on that and taken action.

He told me that Copaxone is not his "go to guy" for MS. He prefers Betaseron/Rebif and Avenox. He told me that if I truly wanted the Tysabri, he would let me have it but I'd have to be watched extremely close on it but he's not an advocate of that drug by any means.

He wishes I was able to tolerate an interferon but I simply cannot do that but he asked me to consider it later on. I just don't think I can go down that road again. I spent from Feb to July on the Betaseron and stayed sick nonstop.

Any thoughts? He gave me Zanaflex ( the lowest dose) to help with the stiffness to take at bedtime. I didn't even fill the Rx yet because I just hate all those drugs. I'm not taking anything at this time other than my shots. I ceased taking Provigil and Baclofen all together.

Any ques...just ask. Trying to remember everything else. I don't know what to do at this point. I just want to be on the most aggressive meds for MS but I mean depending who you talk to, each claim theirs is the best and #1.

Oh he is sending me for a Urology consult since I get up 10 times a night to pee....he said its good I can at least me and not have to be cath'd but its totally messing up my sleep.

Repeat MRI's in December. Which would be a little less than a year from Dx.

I went to work after that and it was all I could do to get through my nursing shift but I did it...

:cry: It's been a day.

Thanks for listening.
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Postby jimmylegs » Mon Aug 25, 2008 6:50 pm

man oh man, sounds like a rough time.

i got dxd in 06 and decided not to take pharmaceutical drugs (i was prescribed rebif interferon). i went after things with biochemistry via nutrition. to me, it made more sense in my case.

just 2 years later, i have yet to take any drugs for ms (so far). maybe one day i will change my mind, but not yet.

that's nutty about the emerg stuff. i would be cheesed too if i were a neuro.

let me know if you've ever taken magnesium against stiffness. sorry if we've discussed this on a diff thread and i did not retain. seriously, i can get bad probs with spasticity and mag does help. take as soluble a form as u can. try chatting with various pharmacists. sometimes they are genius!!!
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Postby tt89 » Mon Aug 25, 2008 6:55 pm

Jimmy. Thank you so much
So Mag....I will for sure try that....how many MGs? What kind did you take? I appreciate it so much...Thank you.
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Postby tt89 » Mon Aug 25, 2008 6:57 pm

Jimmy one more ??

I didn't want to take any meds either but they insisted and were very aggressive about it.....and made me feel if I didn't , I was doomed....
and of course I was so sick back then and did it.....out of fear I think..
even being a Nurse I still and so clueless about MS....
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Postby jimmylegs » Tue Aug 26, 2008 5:26 am

no probs, tt. it's such a scary time. the bad attack, the bad news. i was right on board with the drugs idea when i was first told, just wanted my docs to save me. but i was reading like a madwoman from the minute my post-spinal headache tapered off and i could sit upright again. i decided there was enough for me to work with using nutrition, and that my body would make what it needed to counter inflammation etc, if it had enough of the right ingredients.
with magnesium, try to increase your intake of food sources significantly - say, pine nuts, sesame seeds, dark leafy greens like chard, fortified cereals, etc. you can add 600-1200mg of supplemental mag daily on top of that. i would say, try getting some of your daily mag in a calcium-magnesium-zinc-d3 blend, and the rest at a different time of day, on its own (or with potassium).
when shopping for just mag on its own, try to find a form like citrate. you should be able to find a bottle of 250mg capsules or similar. suppose you take your cal-mag blend in the morning, then you can add a 250 mag citrate at bedtime to start. if you feel like you need more, add another one at lunchtime. when you get up into the higher daily doses, it loosens up the ol' GI considerably, so if you go up past 600 or so, be prompt when the bod says it's time to visit the WC :) mag oxide is one form to be careful of - they all give you the poops but that one is the least absorbable and really goes right through.
one of my most helpful pharmacists told me that potassium goes hand in hand with magnesium (he was the one who told me to take mag in the first place, and i thought i was dying back then and all my scariest probs cleared up in 2 days of taking the mag - and they come back if i stop). so if you eat more bananas, or other high potassium foods, it can help your bod use the upped magnesium intake better. i bought a bottle of 99mg pills, plus started eating more potassium foods like apricots, raisins, cherries, etc. never ate fruit before. don't even like bananas!
i am starting to get low on magnesium pills and when i go to get more, it will be a powder that you dissolve in hot water. i'm not sure what the dosage per mug will be yet, but i had a sample and i like it. it's called 'natural calm'. cheerleader got some for her husband and reports that it's been helpful, and he had really bad spasticity.
hope this works for you tt, let us know how things pan out :)
Last edited by jimmylegs on Tue Aug 26, 2008 7:00 am, edited 1 time in total.
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Postby tt89 » Tue Aug 26, 2008 6:53 am

JimmyLegs, Thank you so much. I could not even make my list fast enough. Thank you soooooo much!!!!
I just can't take these shots anymore and I don't want to live everyday of my life this way.

Are you worried about more lesions without meds? How have your MRI's looked over time?

Thank you !!!!
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Postby jimmylegs » Tue Aug 26, 2008 7:17 am

hey any way i can help, you are more than welcome. i wouldn't want to live with shots that made me feel worse than just having the stupid disease in the first place.
i'm not worried yet. i should post my mri pics. i have the dx set, and a 1-yr followup. i'll be back where i can get at em and post em in september.
i worked hard over that first year, and my spine visibly improved. no new lesions so far, brain or spine. there was one in the brain that was kind of "active" last year but that was when i was on a gradual downhill slide that turned around when i started on the magnesium. i'm so curious about my next set of bloodwork and mri!
my docs have never really listened to me regarding my concerns about malnutrition. i had a very limited diet for a very long time and they just don't want to factor it in. supplements work for me, and my docs do cooperate, luckily, and get me the tests i ask for.
sometimes completely random things are helped when you supplement. when i asked for my zinc test, it was far below the bottom end of the normal range. i supplemented the heck out of zinc (overdid it actually) and in a totally unsuspected side benefit, a skin lesion i'd had for years disappeared. ugh i'm totally off on a long tangent but i had found an abstract that mentioned zinc deficiency can cause parakeratotic lesions, which is what i had. all that by way of saying, when you start on the magnesium, you might find it helping other things besides spasticity!
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Postby TwistedHelix » Tue Aug 26, 2008 7:21 am

Hello tt89,
I'm sorry to hear you're having such a rough time: not only a bundle of awful symptoms but a load of confusing advice from the medics. My first reaction when I read your post was that the doctor seems to suspect progressive MS based on how severe your symptoms are – this is not normally how the distinction is made: it's about the pattern of symptoms, not how bad they are, and you have certainly had recognisable attacks – relapses can be extreme, and it might be that you may not be giving yourself a chance to recover because you are obviously pushing yourself very hard by continuing to work, etc. This is why I don't think they " dropped the ball" by telling you to watch your symptoms for a few days… that's exactly what you would do to try and determine the pattern. Having said that, being treated for seizure sounds like an appalling mistake, (although, of course, this is only a layman's opinion).

I get very uncomfortable when doctors seem to be pushing one drug over another: if it's for sound medical reasons then of course that's fair enough, but I always have this sneaking suspicion that it depends which drug company rep treated them to the best slap-up meal.

So I think perhaps you need another long talk with Duke, armed with a few more questions about why he thinks these things. And try and get as much information as you can from this website about other people's experiences on medication and supplementation, so that any decisions are made with your full consent and understanding. Yes, you would have to be monitored closely if you decided to try Tysabri, but since its initial problems the testing has become an established protocol there shouldn't be a problem,

Good luck!
[edit]
Jimmylegs,
When you mentioned "parakeratotic lesions" my ears really pricked up: I've had some itchy, dry scaly skin lesions which my doctor diagnosed as solar keratoses some years ago. These are potentially precancerous areas, although at least they should only turn into basal or squamous cell carcinomas which are superficial and generally easy to treat. I've had some doubts though, because daily moisturising makes them completely disappear, which I can't believe would happen if they were something like that.
Although I take multi vitamins, how much zinc would you recommend?
Last edited by TwistedHelix on Tue Aug 26, 2008 7:42 am, edited 1 time in total.
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Postby tt89 » Tue Aug 26, 2008 7:21 am

SO for now you advise getting MAG that is maybe from Nature Calm, vs some off the shelf at the drug store? I wonder of Mag can be given as an RX....a better kind. I will be doing some homework today. I have felt totally helpless with this MS but Im going to take control of this monster myself!!! and you just gave me the motivating push I badly needed. THANK YOU. Yesterday just really did me in...Today I'm suffering all morning from the chills, numbness, tingling, and just feel all around SICK.
This has to end. I have a life to live and this thing is not going to rob me of anymore of my life...and the thing is I didn't want the shots, I quit Betaseron after not being able to even get out of bed anymore due to the side effects..going to work feeling like a truck hit me. I never wanted the Copaxone either. They really insisted and they won because I was sick and willing to do anything to get better and also I trusted them when they said "The shots will make you feel better" That is the biggest lie alive. I have felt worse as each day goes by.

You ROCK!
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Postby tt89 » Tue Aug 26, 2008 7:31 am

Thank you so much Dom. Thanks for understanding how right now my head just wants to explode because I have no idea what to believe or what to trust from those docs. It can be a lonely place in this world when you are told you have a monster of an illness, with no cure and one that they are still trying to understand better. Great for them, but you are the one dealing with the monster and it's one that at any given moment can turn on you.
Im not one to be fearful but I admit, I'm very fearful of this MS. I want my life back. I want ONE day where I do not feel this horrible.
Thank you for your time I really appreciate it
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Postby jimmylegs » Tue Aug 26, 2008 7:51 am

hi tt, that is amazing and great that you are feeling motivated and ready to take the wheel!!!! yes!!!

you can definitely just go to a regular drug store and get your magnesium citrate 250mgs there. you should easily be able to find your cal-mag-zinc-d3 blend there too.

i think you should do what's easy and fast right now, and worry about tracking down natural calm later, and only if the idea of a magnesium beverage appeals to you at all down the road.

to the rx question, here is an abstract that may interest you:

A prospective pilot study was undertaken to investigate the ability of magnesium sulphate to control the spasms of severe tetanus without the need for sedation and artificial ventilation. All eight patients admitted with severe tetanus to our intensive care unit within the last year were given magnesium sulphate 5 g i.v. as a loading dose followed by an infusion of 2-3 g/h. The infusion rate was increased to control spasms while retaining the patella tendon reflex, which proved an effective guide to overdose. Spasms were effectively controlled and serum magnesium concentrations were maintained within the therapeutic range. Spontaneous ventilation was adequate, ventilatory support being provided only for the management of lung pathology. There was no evidence of cardiovascular instability due to sympathetic over activity. No supplementary sedation was required for the control of spasms or autonomic dysfunction during magnesium therapy.

We conclude that magnesium sulphate can be used as the sole agent for the control of spasms in tetanus without the need for sedation and artificial ventilation.
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Postby jimmylegs » Tue Aug 26, 2008 7:59 am

one more snippet

Magnesium is a physiological calcium antagonist and there is a significant correlation between depression of neuromuscular transmission and serum magnesium concentrations. The fact that these effects are dose dependent and controllable is a great advantage over muscle relaxants. Magnesium is utilized in the control of spasms in eclampsia and the safety of the therapeutic range (2-4 mmols/l) has been well established as areflexia only occurs at levels above 4 mmol/l and muscle paralysis above 6 mmol/l.
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Postby jimmylegs » Tue Aug 26, 2008 8:09 am

and another little tid-bit:

Measuring magnesium levels in the blood plasma will often fail to demonstrate low levels, although RBC magnesium levels have been shown to be low in PMS sufferers. [43] Therefore, women who want to have a true picture of their magnesium levels should be encouraged to have a RBC magnesium level done. Estrogen enhances the utilization of magnesium. However, if estrogen levels are high, which is often the case with PMS, and magnesium intake is less then optimal, estrogen-induced shifts of magnesium can be deleterious, leading to muscle spasms, migraine, and other PMS disorders. [44] In one study serum levels of magnesium were inversely related to the serum level of estrogen. [45]

Magnesium supplementation can help alleviate many measurable parameters of PMS, including cramps, irritability, fatigue, depression and water retention. [46] [47] Magnesium citrate, gluconate, and lactate are better absorbed than magnesium oxide. Magnesium glycinate is a well absorbed form, with minimum laxative effects.

Dosage: 300mg-400mg/day. Natural health care practitioners often recommend higher doses until symptoms are alleviated. Doses should be spread out throughout the day to avoid laxative effects. Supplementation with Vitamin B-6, along with magnesium, can help to increase cellular uptake of magnesium. [48]


looks like citrate is fine, but maybe i'll keep an eye out for glycinate next time too. i do take a b-complex along with one of my magnesium pills each day. b-vitamins have helped me so much with my other issues!
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Postby tt89 » Tue Aug 26, 2008 8:11 am

:wink: You are all wonderful people. Thank you. It was meant to be I stumbled onto this site.

I wish you all a beautiful day night..depending on your time zone..

Many Thanks! :D That smile is thanks to you!

TT
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Postby jimmylegs » Tue Aug 26, 2008 8:14 am

keep smiling tt!!
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