Need some advice please!

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Need some advice please!

Postby worr » Mon Mar 05, 2012 6:40 pm

So first a brief intro (which I suppose should go in the introductions forum, but since I have a question to ask...):
I'm relatively new to MS... had minor twitches and stuff for years that in retrospect were probably symptoms, but anyway the first big thing was in October or November of 2010 when I had an optic neuritis attack in the left eye (still have lingering issues from that) that was treated with oral prednisone. After that, I started getting other "minor" symptoms like random twitches and occasional numbness (mostly frostbite-style in the legs), and once (not 100% sure this was MS-related) a sudden-onset stiff neck. But nothing (other than maybe the neck, and fatigue) that I considered major. I am not on any long-term MS drugs yet.

Now on to my question. I know this will sound so trivial and minor to those who are worse off, but please bear with me... I'm really scared and stressing out. Last Wednesday, I woke up to my left arm/hand being (half-?)asleep. I figured I had just slept on it wrong since I had kind of fallen asleep randomly, but it didn't go away. Contacted the University clinic that I've been working on getting in to (long story, maybe I'll post it properly in the Introductions forum later... typing's a pain right now), and I got an appointment for April but they said their docs don't usually prescribe anything for numbness. Got in to see my old neuro on Friday and he prescribed prednisone (30mg 5 days, 20mg 5 days, 10mg 5 days which seems low compared to other posts I see here?).

Nothing's gotten better though (except for a brief episode when I was barely awake on Saturday when it seemed to go away completely for about 10 seconds but in retrospect I think I may have been imagining that). Instead, it's spreading. Friday, my upper left chest area. By the end of the weekend/this morning, my whole left torso (chest/stomach/etc) and butt cheek, and this evening my upper left thigh too. Called the neuro this morning and he says there's nothing else to do and what I'm doing is the right course and hopefully I'll be better in a few weeks, but that IV wouldn't make a difference, and to reduce prednisone dose on schedule.

My brother (pre-med college senior, smart, has learned a lot of this stuff, but is obviously not a doctor yet) is pushing me to see another neuro since he thinks that more steroids or IV would make a difference and is worried about lasting effects from me not taking more aggressive action now. I kind of see where he's coming from because I'm haunted still by the fact that I was told (by this neuro!) might've had a better recovery from the ON if I'd seen someone sooner instead of trying to wait it out. I don't know what to do, worried about pissing off my existing doctors (and wasting time if there really is nothing else to do) if I go see a 3rd one, don't know whether to trust the judgment of my neuro who's obviously studied all this but also seems reluctant to cost insurance money (resisted getting MRIs until a 2nd attack when I had ON, explicitly talking about wasting insurance money on something not clearly needed -- though he does advocate me going on copaxone which I plan to do soon so he's not completely just trying to save them money, I just think he might be a bit more conservative in when he thinks something is useful). Also don't know what the insurance (PPO) will say about me having so many appointments in a short time even if the doctors don't care (which I suspect they might) -- remember I have an appointment with the University clinic in the beginning of April.

So basically I'm really stressing out about this and need advice on whether to pursue anything else or just wait it out. It's made worse by the fact that unlike my previous "minor" symptoms (except ON), the semi-numbness especially in the hands (btw if it makes a difference the numbness is strongest in thumb and goes down progressively to very minor in the pinky) is "debilitating" to me trying to type (i work w/ computers for a living), do any sort of delicate work, even simple things like clothing buttons, etc. Again I'm sorry if this offends anyone with more severe actually debilitating symptoms that I don't have (yet?), just speaking relatively and I understand I'm still much better off than many others but I'm freaking out.

Thanks! sorry for the wall of text with parentheticals... I hope it made sense (but happy to clarify) and any advice you can give either way (maybe experience? does more aggressive steroid therapy make a difference long-term?) would be immensely helpful to me!

Also as a side note, how significant of an aggravating factor is stress? I'm involved in some somewhat (not hugely) stressful situations that I could temporarily avoid if they're going to affect my health (though avoiding them may in itself be a source of stress... :-P)
worr
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Re: Need some advice please!

Postby lyndacarol » Mon Mar 05, 2012 7:40 pm

worr – As you will learn, every member of this website has a unique set of experiences, a unique set of symptoms, and a unique set of ideas concerning this disease. Do not apologize for your situation; we run the gamut here; everyone is entitled to deal with his situation as he needs to. Welcome to our community. Feel free to ask your questions and contribute as you can.

MY suggestion is that you start at the beginning: Find a GP or internist (preferably a "disease detective" or interested in Functional Medicine) – a compassionate person willing to work with you long term. Their basic charge should be less than that of a specialist (neurologist). Establish a baseline with a thorough physical examination, blood tests (for cortisol – the stress hormone; for thyroid hormones – TSH, Free T4, Free T3, Total T3, Reverse T3, and anti-thyroid antibodies; for your fasting serum insulin level in addition to your glucose level; numerous vitamin and mineral levels, including D3, etc.)

Record a list of your symptoms; ask for and keep your own file of test results.

I am not a big fan of any drugs. I know that corticosteroids are often prescribed, but they come with their own set of problems (They raise one's glucose level and resulting insulin level; diabetes often develops in a person taking steroids often or long-term.)

I suggest you investigate the Diet forum here and also the Reading Nook and begin reading, reading, reading. 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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