Quitting LDN (and random ramblings.)
 

Some of you may have read that I quit taking NuVigil a couple of weeks ago.

I feel much bettah!!! After approx. 4.5 months I never could achieve that first 2 weeks of mental clarity and energy. NuVigil was dragging me down and interfering with my ability to think and function.

So,

I'm experimenting with my Rx drugs to see if I can still function normally w/o them. I don't take many (just 4).

Haven't taken LDN for about a week. Haven't missed it or noticed any difference.

I think Amantadine will be the next to go.

I only take 1/2 a dose (I cut my pills in half) of Citalopram (antidepressant), and may begin tapering off that in another week or two. We'll see...

The one I absolutely won't mess with is my thyroid pill. Just switched to Armour about 3 months ago. So far, so good!

Oh, and I underwent/endured an EMG to test my nerves last week. No carpal tunnel in my left arm (which is very numb). Mild CT in my right (not very numb & doesn't hurt). Go figure! *shrug* I never really thought it was carpal tunnel, but new doc wanted to make sure.

I have a date with my neuro in Dec., but not sure I'm going to keep it. Why should I? I know I'm lucky that my one and only lesion (C-spine) never seems to change. My numbness keeps progressing, but my abilities are pretty much the same as they were 5 years ago when I was dxd with MS. New neuro says NO to MS -- MAYBE transverse myelitis.

Whatever it is, I'm thankful its mild. It breaks my heart to read about the challenges of many of you dear ladies :heartthrob: who struggle with the stuff I admit I've taken for granted: standing up and walking where I want to go w/o fear of falling; using the bathroom without worry; driving a car; keeping a job; cooking and caring for family.

I admire you for your courage in talking about these day-to-day challenges. Thank you for that -- it gives me hope and strength in knowing that if/when its MY turn, I'll be able to hang in there and make changes/adapt as needed.

Love you guys (No, not going anywhere, just haven't said it in awhile). :circlelove:

Ever since I was diagnosed, I've had a nagging half-fear that if I changed neuros or saw a specialist, they'd take the dx away from me...and THEN what? Back in limbo?

Good for you, Twink! I'm glad you're able to stop some of the meds. :)

I have to admit that I've thought about it. I've stopped all supplements and vitamins due to my surgery (had to stop a week beforehand) but I'm seriously thinking about stopping the Krill Oil as I already take Astaxanthin and it's in there already.

I won't stop my AD or my HBP or thyroid meds. I might just try those three for a while and see how it goes.

I've really considered stopping the LDN and see how that goes, too. I have to stop taking it on Saturday due to the surgery on Tuesday so I might just try to go without it for a while and see how it goes.

I'm glad you started this thread. It's nice to see how others are doing when they experiment with certain meds. Good luck to you! :hug:

I hear you Twink. I am on the absolute minimum for me. I tend to try them and if they don't benefit me I stop them. I take four for MS related symptoms but there have been many more from time to time because with the nature of MS the symptoms can come and go. It's important to evaluate our condition and if we're able, to get off the meds that no longer help.

Well done Twinkletoes - I hope that this continues to work out really well for you.

Kitty, good luck with your surgery - you won't know yourself when it is all over and done with - you will probably wonder why the heck you waited so long - I know I did.

Cheers

Lyn

Some benefit from meds, alas I didn't. In the beginning I tried Rebif, Novantrone and ADs (to help increase endorphins.) Besides making me be sick or feel sick nothing helped. So I just take Amantadine (learned I go from dead to half dead and that is an improvement). With Vesicare in AM and Oxybutin before bed(anti-pee meds) ,I sleep all night until 5 AM and have to pee, can get out of house for awhile. If I get a neuro - pain, I sometimes take Vicodin.

kicker, glad you reminded me about Amantadine's slight energy benefit -- I thought maybe I was nuts.

In Feb. a doc in TX at an urgent care facility and I disagreed about why another doc had originally Rxd Amantadine.

I tried to tell the TX doc that I thought it was to help with fatigue. He actually went to the trouble of printing out an info sheet about the drug to prove I was mistaken. :mad: I've wondered about it ever since!

Twink,
All my neuros have been MS neuro - some University of Maryland MS Center, Some Johns Hopkins. My current is running Cliniocal trial on
Fingolimod for PPMS. A past JH neuro guy, another MS Clinical trial. Every doctor has their own way. One put me on ADs and never followed up. My current poo-poos trying LDN but put me on bird poison (sorry, they call it ? and went from $31 to have generic compounded to Big Pharma's $1500.00 a month drug.(Fampridine?)

My current neuro and I agree, he can do nothing right now for PPMS me and MRIs are a waste of time right now. He treats symptoms and/or problems as they arise. He answers all e-mails within hours and I never abuse the privilege. Maybe that's as good as it gets.

Thanks for posting what's going on, Twink...and everyone else.

I feel like a medicine chest sometimes, I take so much...I can't go off my muscle relaxant, it barely works as it is...thyroid, I'd die (literally) if I quit it...bladder meds-I've cut out this occasionally since my Rx is expired and I'm running out and don't want to see the bladder guy...he wants to do more surgery and I don't wanna...:mad:

I occasionally get tired of daily injections of Copaxone...I have a 3 month oversupply in the refrigerator.

As for statins, if I go off, the numbers skyrocket...the others are vitamins/cranberry etc. I know for sure the B12 helped my numbers climb to normal...

And new meds for RLS and emotional overreacting...the new RLS med is really nipping the movement in the bud, but as for the emotional stuff...cry cry cry...I'm thinking of going off of it, even though I don't cry when I can't find my car any more:rolleyes:

Pharmas make a bundle off of me!!

Maybe it's too early to tell.......Ive only been off the LDN two days :rolleyes:.......
but my legs seem better. They don't move around at night and I seem to be walking better first thing rather than having to wait till my legs "kick in" to be able to walk. We'll see how this next week goes. I go in tomorrow for my surgery and hope to be at home tomorrow afternoon. I've stopped taking everything except the Prozac, Levothyroxine (thyroid) and Lisinopril (HBP). I won't take anything tomorrow until I get home. If I still feel good after the surgery - and without the LDN - I might just give it a break and see how it goes. My pocketbook will like that!

Sounds like a good plan, Twink. The only thing I would question is the LDN. You haven't progressed so far, but who knows what will happen in the future. My neuro agreed that the LDN must be working in my case since after having it for so long, 35 years, I should most likely be bed-ridden by now. It seems to have slowed the progression. Just a thought:rolleyes: FWIW????? :hug:

I took Amantadine for fatigue way back...it made me (more) anxious, and I broke out in purply splotches. Oh well.

Saw my new GP today
 

He wasn't too thrilled about my quitting these drugs all at once!

Guess it wasn't a smart thing to do -- I've been having some random neuropathy tinging/electrical sensations.

So I'm back on the LDN and AD for now.

I stopped LDN last Saturday (for surgery) and haven't started it again. Can't really tell a difference. I think it'll be a couple of weeks before I start feeling better again but that's because of the anesthesia.

Should I start it again or not? I'm torn because I don't want a flare up.....but I don't want to take stuff that's not helping me, either. Arghhhh.....what to do!!! :confused:

i advise against cutting your antidepressant. thats a classic mistake people make, they feel better so they cut back on the medicine that is making them feel better. its how people end up in very dire straits, imo...

good luck with the rest!

The trouble with (most) stupid MS drugs is that you can't really tell. You take tylenol and your tooth stops hurting. You take a prescription and your blood pressure goes down, or your blood sugar changes, or whatever.

You take an MS drug and....who knows? If you don't have new lesions/symptoms, then the drug is working...or not. Maybe you wouldn't have had changes anyway. If you have new or more lesions/symptoms, then it ISN'T working...or maybe it is. Maybe you would have had MORE changes without it.

I'm not crusading against the DMD's. I'm just sayin'.

Exactly! It's just a crap shoot and you take your chances either way.

I hope I don't regret stopping LDN but I'm cutting way back on everything I purchase.

I don't know that he's right but my neuro will not prescribe LDN (Low Dose Naldrex) for my MS as there are no Clinical trials. But Big Pharma certainly won't run any as LDN is not cost effective (A potential big money maker a jaded person might say). I have not pursued other avenues to get it as I'm not sure of it's effectiveness.

Well, you were right, clarkstar!

Feeling better now that I'm back on my usual half dose of AD.

But have not taken LDN for a couple of weeks and don't miss it.

Best wishes to all -- its hard to know what to do. It would be so much simpler if we had definitive proof that DMD's work!

All I needed to see was my MRI six months after I started on Tysabri to know it was working for me, and every MRI I have had since backs it up.

Tysabri works fo me and works exactly as it is supposed to do, with no negative side effects. no new lesions, no enhancing lesions, many formerly visualized lesions are gone gone gone!! :)

Too bad everything we take doesn't give us the observable results, both clinical and subjective, that I get from this stuff!

That's great, River!

I am very happy for you!

I'll have to ask the manager of the grocery store if his Ty results are that remarkable. He uses a scooter at work.

How long you been on Ty, River?