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I'm wondering who would be the likely choice to help me with symptom management. My GP is WAY more accessible and nearby but would he know enough about MS to help me? I'm not on any medication besides Rebif and ibuprofen but if there's something out there that could help with nerve pain, I'd like to try it, I'm just not sure which doc to talk to. My neuro would definitely understand the pain but my next appt. with him isn't until November. I wish i were more assertive with doctors but I never have been and likely never will be. Here's an example, on my last visit I told my neuro this; "My right foot/leg has been bothering me a bit" (in a non-chalant manner) and I'm thinking..."omg, did I just say "bothering me a bit?"..."what I meant to say was "THE PAIN IN MY RIGHT FOOT/LEG IS OFTEN AGONIZING AND HAS RUINED MY LIFE FOR THE PAST 4 YEARS...PLEASE HELP ME"
Then i walk away wondering why he didn't take me more seriously.

kar, there will probably be plenty of pain recommendations on here that you can take to the GP

have you thought of writing down what you suffer, in a journal or file of sorts, and just handing that to the doc at your appointments? do you have that 'one issue per visit' rule at your doc? if so you could sort of prioritize. imagine, calling up and saying can i have an appointment for this, another one for that, one for the other thing oh and a final one for the last thing, that might make the point without you personally having to elaborate much face to face

kar do you get any testing nutrition wise? is it burning pain? or musculoskeletal pain? one can come from b complex deficiency (b6 in particular) and the other from vitamin d3 deficiency - commonly found to be lower in ms patients... magnesium could also be involved...

jimmylegs wrote: have you thought of writing down what you suffer, in a journal or file of sorts, and just handing that to the doc at your appointments?

Excellent!!! I personally have used the online journal off of this site since my dx. Whenever I go to the GP or Neuro, I print a copy of it and hand it to them, kind of keeps them up to date with whats going on with me. I keep my entry short and simple, Like:
Fri, Jul 31..A little constipated, headache around 6pm, rebif 44 @ 2200. Off of work day. Did a little yard work, very hot outside, 95 degrees, Got overheated but no sweat.


Just a little each day. Helps the Dctrs to see whats going on.

that's cool bubba and very smart. it sure helps them get a much better 24/7 picture.

Karazhan, pain is also my most debioitating sx right now, mostly I think because the neurontin I'm on fo rhte pain makes me so 'cognitively challenged) (read that stupid...), that I'm not noticing too much else.

It is difficult, but not impossible to have your Docs work in concert. I've done that lately, it works for me.

I've brought up pain at every neuro visit, and not gotten much response. I don't think that their training is as pt oriented as is a GP's. It's much more disease tx. pain in ms is something they can't do too much about..maybe that frustrates neuros, who knows.

I asked my GP if he would be willing to co-manage my health needs and tx, he's all for it.
One of the problems I've found is that if you have a very particular sx, like your leg pain, that is not in your neuro's experience, he may be likely to write it off as not related to ms in a neurological way. And maybe in a sense he's right, BUT it may be related to MS in a physiological way in that perhaps your gait has changed, and that has lead to leg pain.

My neuro ignored that fact that I had a blinding headache for 2 years. honestly he didn't even respond when I brought it up. I took it upon my self to see a pain specialist who did an occipital nerve block and poof, no headache.
On retrospect I do have 2 good sized lesions on my cervical spine, and have developed a kinda hunchy, shoulders drawn up posture, so, in a sense it's traces back to MS, but it's not MS.

Does that make sense to anyone? Most times I'm sure of what I want to say in my brain, and it doen't come out my fingers!!---------------------

Msmything--You cannot imagine my surprise when I read your comment,

and have developed a kinda hunchy, shoulders drawn up posture

because I have noticed the same change in my posture within the last couple weeks!

I am still trying to figure out what is going on. It seems to be a problem of the muscles; but, I don't know its origin. There is comfort in knowing that I am not the only one dealing with this.

I think it's a muscle issue too, but in the sense that the nerves that go to the muscles are acting wierd.
It sure seems that you could describe the oddest physical manifestation of something, and at least one of us here has experienced it.

Honestly, I didn't know I was doing it till I tried on a really good business suit that I have ahd for a couple of years, and when I purchased it I had the sleeves tailored.

I put the jacket on and my hands barely came out the ends unless I very intentionally relaxed my shoulders.
Not one of my more impressive days...but everything is a learning opportunity..at least that's what i tell myself!

jimmylegs wrote: kar do you get any testing nutrition wise? is it burning pain? or musculoskeletal pain? one can come from b complex deficiency (b6 in particular) and the other from vitamin d3 deficiency - commonly found to be lower in ms patients... magnesium could also be involved...

JL,
Definitely a burning pain but with some other sensations thrown in there, sometimes it's as if my foot were in a vice. Ankle pain and stiffness. It's kinda strange, I can stub my toe or step on something that should hurt but I don't feel it until much later. I can't stand anything touching my feet, I sleep with covers only coming to about mid-calf.
This started in 2004 and was diagnosed first as morton's neuroma, then peripheral neuropathy, I didn't know I had MS until early this year. I had bloodwork done in 2005 and again this year, I saw the results and everything was in the normal range but I've read enough of your threads to know that doesn't necessarily mean my levels are what they should be. Based on your advice, I did pick up some magnesium, B12, Fatty-omega and then my mother insisted I needed something called CQ-10. It's only been a couple of weeks since I started using these and I can't really see much difference yet (I have to admit that I've forgotten to take them at times). How long does one have to use these before levels come up? and...if you forget a day or two or three, will that affect your overall level?

hi k, perhaps think about adding a b100 complex and a good all around multi? and what about the d3/mineral angle have you considered that at all?
when i had the most serious (for me) level of disability, i had to take about the equivalent of 4 b100 pills per day for three days, with a few other things added in there too (importantly, i believe, vitamin e) to see improvement. then i could suddenly type and play guitar and everything again.
it took much longer for the hypersensitivity in my hands to dissipate. and it took years for the tight puffy feeling to go - but it finally has. i am just left with the numbness now.
when i couldn't breathe and was choking from dysphagia, the magnesium (i took as much as i could handle but 750mg per day is a bit high for me, usually about 500 is my daily max) worked in about two days.
i wish i could remember how long it took for the cement legs thing to go away (it still comes back to a degree, if i overdo exercise), but i don't remember any light bulb moments on that. i think just changing my diet so much and working so hard on my nutrient status has helped everything improve over time.
it would really help figure things out if you knew some levels. i discovered my zinc deficiency as part of a sweeping request for a bunch of mineral tests. fixing that cleared up some long-standing problems with confusion (neuro hinted at taking my drivers' license away), and it coincidentally seems to have improved my liver function (uric acid is normalizing and d3 absorption skyrocketing!)
anyway k, i am kind of the opinion that normal supplements are for the healthy. they are packaged in maintenance doses, so if you start out depleted, they won't help you boost back to normal. it really helps to know what to boost though! if you can't get the info on your blood status, you can just start with a quality, hopefully natural food source multi, and add extra doses of the 'usual suspects' in ms. i've added my signature here so you can read more.
HTH!
JL

lyndacarol wrote:Msmything--You cannot imagine my surprise when I read your comment,

and have developed a kinda hunchy, shoulders drawn up posture

because I have noticed the same change in my posture within the last couple weeks!

I am still trying to figure out what is going on. It seems to be a problem of the muscles; but, I don't know its origin. There is comfort in knowing that I am not the only one dealing with this.

Sounds like muscle spasms from nerve damage perhaps - I have a almost-always seized up muscle in my mid back, and thoracic spinal lesions, I assumed the lesions cause the spasticity (?)

In Australia, my GP has been there for symptom management. I have done most of the research on the medication, he will then either right out a script if he is familiar & comfortable with it, or if he is not sure, he will make a phone call to my neuro, and then write out the script based on that. They should be working together as a team.