Multiple Sclerosis

[SociallyChallenged]

if it's ms, yes. but since there's nothing to indicate ms except for symptoms typical of cervical dysfunction, a trial of care would be a good way to go before getting a ton of tests done that may be inconclusive anyway. if the trial of care fails to yield subjective and objective changes, then the next step would be to see a neuro. but, then again, that's just my conservative opinion. a month of treatment isn't going to speed up his potential ms any.

Considering that the OP clearly has other CNS dysfunction (history of seizures, horner's syndrome, ptosis possibly), the goal is to treat the most serious issue that is likely to be present. Sure, I'd treat him for cervical pain and dysfunction in a heartbeat, but with his history, his CNS has some things going on other than just neck-related pathology. I would hate to go to a doctor who equally suspected cancer (perhaps a Pancoast tumor) and possible thoracic outlet syndrome who just told me to get treatment for TOS. I want the doctor to treat the most serious plausible condition first. In this case, that is MS. A couple MRIs aren't very difficult to obtain, especially with decent insurance. If things come back fine there, then sure, conservative treatment is the best option. However, if it's not, conservative care is an additive and is vastly different (for MS compared to C/S issues).

In addition to this, if he does have MS and isn't properly educated on managing physiological and psychological stress, he could experience a flare up. That flare up may severely reduce his quality of life, especially around this time of year. MS is not a diagnosis that you try to delay. You need to get information on it so that you can have the patient properly make lifestyle adjustments. A month may make all the difference.

 

[eits]

i see your point. however, you're automatically jumping to a conclusion that may not be the case. it's far more likely a person will have cervical dysfunction than ms. if a trial of conservative care doesn't help, then you take it to the next level and see if it's something more serious.

i used to be just like you whenever i got out of school... something i've found is that worst case scenarios are more rare than you think and it's not worth freaking the patient out over until you've tried being conservative. i mean, for crying out loud, you're already assuming the op has ms without having any clue other that symptoms of many other things, one of which is ms.

also, a pancoast tumor would be found on x-ray. just saying.

and, no, one month isn't gonna make any drastic difference. at this stage, one month isn't gonna make "all the difference" if he has ms.

based on your rationale, everyone who's got low back pain or headaches or simple symptoms of ms should IMMEDIATELY see a neurologist to make sure it's not ms. i know you've heard this phrase before when doing ddx: "horses, not zebras"

why? is that phrase important? well, so you don't increase healthcare costs, waste the patient's and your own time, and so you don't freak the patient out. go with what's most likely first... if that doesn't work or seem to help significantly, then start looking for other things it might be.


EDIT: nevermind. scratch what i said. i was talking out of my ass because i didn't even read the op. i kinda skimmed the thread briefly and, really, only read sc's post. op already stated that he's been diagnosed with ms. my posts are pointless if it's already been a confirmed diagnosis.

 

[nickbits]

Right now I am at the CIS stage.

I guess I'm not too worried about the drugs making me more depressed just using that as an excuse not to take them. My insurance won't cover Gilenya, so that's out. The docs only suggested avonex, rebif, betaseron, and copaxone. They didn't have a preference to which one I go on. My copay is 2x higher on beta seron, so that would be my last choice. Based on everything I've read, avonex would be my top choice. I am thinking about taking it now moreso than I was when I made the OP but I am still in the fence. I will post some pics of my "bad" MRI when I get home for kicks.
I wish I could say for certain if the issues I've been having this year are because of ms or all the medications I've been on. All the side effects overlap with MS symptoms. If I was certain the issues were caused by MS I would have a stronger push to take the drugs.

 

[Dulanic]

Right now I am at the CIS stage.

I guess I'm not too worried about the drugs making me more depressed just using that as an excuse not to take them. My insurance won't cover Gilenya, so that's out. The docs only suggested avonex, rebif, betaseron, and copaxone. They didn't have a preference to which one I go on. My copay is 2x higher on beta seron, so that would be my last choice. Based on everything I've read, avonex would be my top choice. I am thinking about taking it now moreso than I was when I made the OP but I am still in the fence. I will post some pics of my "bad" MRI when I get home for kicks.
I wish I could say for certain if the issues I've been having this year are because of ms or all the medications I've been on. All the side effects overlap with MS symptoms. If I was certain the issues were caused by MS I would have a stronger push to take the drugs.

Out of those I personally recommend Rebif. In the studies Rebif has a slightly higher effectiveness ratio than Avonex. Also, Avonex is a once a week shot but it is in the muscle (thigh usually) and is strong so it tends to have stronger flu like side effects. Also, if you have a problem with needles... Avonex is a long needle. Rebif is easier to inject and is smaller doses more often so it tends to not have as strong of side effects.

Trust me, I understand the excuses not to take them. I have been there. Hopefully your neurologist can keep track of how it works for you. I had to 2 insurance denials to get away from Avonex when I changed to Tysabri.

 

[nickbits]

some pics of mri from jan 2010
the lesions are about 1/4 the size in my july mri






you can see the hole drilled in my head in the 2nd pic

 

[Malfeas]

http://www.terrywahls.com/

http://www.youtube.com/watch?v=KLjgBLwH3Wc

This touches on somethings SC mentioned, hope this helps.

 

[eits]

http://www.terrywahls.com/

http://www.youtube.com/watch?v=KLjgBLwH3Wc

This touches on somethings SC mentioned, hope this helps.

i'm a member of the ifm

:thumbsup:

 

[nickbits]

http://www.terrywahls.com/

http://www.youtube.com/watch?v=KLjgBLwH3Wc

This touches on somethings SC mentioned, hope this helps.

Interesting...

 

[eits]

Interesting...

paleo is the way to go.

tons of fresh veggies ftw

 

[prism]

http://www.terrywahls.com/

http://www.youtube.com/watch?v=KLjgBLwH3Wc

This touches on somethings SC mentioned, hope this helps.

Darn, he beat me to this link! Extremely interesting stuff, especially since she's an MD. Maybe eating like her won't work as a magical MS cure for everyone, but it sure as heck can't hurt to try, and at the very least you'll feel much better than eating an average "modern" diet.

Best of luck to you, and keep us posted on how you're doing.

 

[nickbits]

I am going to call the doc tomorrow and tell him to put me on Avonex. Not sure when I'll actually get my first shot, I think it has to get insurance approval first and I have to use their "specialty pharmacy," whatever that is.
Coincidently my health has been worse since I started eating better and exercising. I was doing great when all I ate was prepacked frozen junk and never got any exercise.

 

[interchange]

Good luck to you. How are you doing in the last few days?

I'd like to echo SociallyChallenged's opinion over eits. Clearly you have cranial nerve palsy and seizures which demands neurologist evaluation and are not symptoms of "cervical dysfunction". I don't want to undermine chiropractic care in general as many people have better results with seeing a chiropractor than with traditional medical therapy. However, you clearly did the right thing by seeing the MD. Hopefully your diagnosis is firm and correct, but as has been stated sometimes neurologic diagnoses are not definitive.

I'd like to clear up the question of ptosis vs. horner syndrome. First, ptosis is just the medical word for sagging eyelid, so you definitely have ptosis. Horner syndrome is a syndrome of sympathetic nervous dysfunction that includes partial ptosis but also pupil constriction (and generally red eye and alteration of sweat function). Ptosis can definitely caused by a CNS lesion (in the brain or spinal cord) and not necessarily by the cranial nerve (peripheral nerve whose originates from the brain stem instead of spinal cord).

As has been said, the course of MS is highly variable. Some people have only one MS flare in their life and are perfectly healthy without any treatment. Others have a progressive form which usually responds poorly to treatment. Most have relapsing-remitting, which unfortunately can't be predicted all that well. I have 1 friend with MS and 2 with parents who have MS. One is completely asymptomatic on no therapy. One is not doing so hot. The other is doing well other than fatigue but did have to be hospitalized once in the last year.

Basically, my best advice is to find someone to talk to about all this stuff and maintain your mental health. In my experience, people who have chronic debilitating diseases are often better spirited than people with relatively minor ailments. It's just how we individually deal with it and what support systems we have in place.

Let us know how you're doing!

 

[Dulanic]

Best of luck man. I hope it works well for you.

I am going to switch from tysabri to gilenya in 2 months. Kind of worried about coming off tysabri but the risk is starting to worry me since I am soon to be a parent and don't feel that risk is worth it anymore. It is easy to take risks when it's just you... Things change I guess.

 

[OlafSicky]

I know 2 people and one is doing better than the other. The one that is doing better is on a raw food diet. The other person got an experimental procedure that widens your arteries in the neck or something like that and has improved so I suggest you ask your doctor about that.

 

[eits]

I know 2 people and one is doing better than the other. The one that is doing better is on a raw food diet. The other person got an experimental procedure that widens your arteries in the neck or something like that and has improved so I suggest you ask your doctor about that.

:thumbsup:

 

[Dulanic]

I know 2 people and one is doing better than the other. The one that is doing better is on a raw food diet. The other person got an experimental procedure that widens your arteries in the neck or something like that and has improved so I suggest you ask your doctor about that.

I still can't recommended unproven treatments on their own. I can see it in conjunction with proven treatments but is it worth risking long term disability with what could end up being snake oil?

 

[interchange]

I still can't recommended unproven treatments on their own. I can see it in conjunction with proven treatments but is it worth risking long term disability with what could end up being snake oil?

I don't know anything about the potential treatment being offered, however you should always inquire about risks and benefits of a procedure as well as the data they have backing it up. Technically you should always get the former (i.e. informed consent), but I'm not sure I've ever witnessed the legal standard of informed consent being given.

 

[GWestphal]

I recall reading a study last year regarding MS. Something to do with CCSVI. I'm a bit foggy on it, but stenting of some vein helped stop progression and reversed symptoms in some cases. Might be something to talk to your physician about.