Relax , take a Deep Breath ,then give me a Reply! :-)

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My goodness, but there has been an awful lot of YELLING on this board

lately! I think that the personal issues add depth and understanding,

especially for those of us with a disease other than MS. BUT (and

there is always a big But somewhere), if the goal of this board is to

lend some extra legitimacy to LDN as a therapy for MS, Fibromyalgia,

Auto-Immune disease and Cancers then maybe everyone should just be

referring their medical practitioners to Sam's (Redtruck99)survey

site:

http://home.earthlink.net/~dflomer/LDN/

since there is statistical information, patient commentary, links to

other testimonials, links to research and the like. DON'T refer your

MD, Neuro or PCP to this site since there is a lot of clutter here.

It is the normal clutter of day to day living. And I won't point any

fingers at those of you who forget to delete all the original posts

under your responses, thereby causing a bejillion repeats of a very

long-winded post to appear and reappear for days on end. No, no

finger pointing here!

I don't see much wrong with the occasional chat about the very real

issues we all face when living with any kind of debilitating disease.

It affects every aspect of our lives, our friends, families,

partners, spouses and children. It reaches into the very core of our

being and changes us forever. There is a heavy emotional side to

living with all of this and it is frustrating. Therefore we should

all be able to vent once in a while.

But in all fairness, I have to agree that those of us with something

other than MS on our plate tend not to get too many responses to our

questions...as of yet anyway, I am still a tad new here. But after

receiving over a dozen digests, I still have heard only a tiny peep

in reply to my questions.I had hoped that this board would enlighten

and inform me about how to properly purchase and dose the LDN and

what to expect from it. I have learned a lot but I am still curious

about so much.

SOOOOOO.... Here goes:

I would still love to know what I should do about chronic pain. I

have had chronic stiffness, cramping and burning in my calves/ knees/

thighs and cracking of the knee joints, all of unknown etiology. This

has been going on for over 18 months, came on rather suddenly, just a

month before my auto-immune disease was Dx'd. My rheumatologist has

it narrowed down to either Fibromyalgia, Behcet's Disease, Peripheral

Neuritis associated with Pernicious B12 Anemia or Left Overs of my

battle with a severe Endocrine disorder. (No one has completely ruled

out MS although I had a clean MRI of my brain)

I am on a daily, TSH-suppressive dose of thyroid hormone. I am

phsyically hypothyroid but chemically hyperthyroid, post- Total

Thyroidectomy for Hashimoto's Disease (autoimmune thyroiditis),

Hurthle Cells (benign) and Papillary Cancer of the Thyroid gland

(malignant). I was also just diagnosed with Hepatitis C Viral(HCV).

The fun one that, like Herpes, Annoying Cousins or Bad Luggage, never

goes away.

That said:

I hear many of you complain of morning stiffness. Some of us with

Fibro or Neuropathic pain have stiffness,too. I have morning

stiffness that lasts anywhere from 10 minutes to two hours depending

on weather and the day. I also deal with numbness in my extremities.

I wake up at night sometimes with sweats and the rest of me is

" asleep " , especially my fingers and arms, sometimes my legs, too. I

have also dealt with bladder spasms but Elavil has helped get rid of

that. Will the stiffness and pain get worse or better as time goes by

and can we use OTC pain meds to help? Or an anti-inflammatory like

Naprosyn? Can we still utilise prescriptive pain meds if severity

warrants? Will the naltrexone block the effectiveness of an opioid-

based pain medication? Would it be best to get all of that kind of

medication out of my system before commencing the LDN therapy? Did I

actually hear someone mention that any residual opioid-like compounds

in the bloodstream might actually decrease the effectiveness of LDN?

And as a last question: Has anyone found Physical Therapy easier or

more difficult since initiating LDN?

I know I just dumped a ton of questions onto your plate. I hope I get

some answers. Many thanks to each of you for sharing the ALL that is

your life with MS, Fibromyalgia or whatever malady you are battling.

Caring support from people like yourselves is what got me through

my " Thyroid Storm " ,and the surgery/recovery for the cancer. Keep it

up folks. We all need each other in one way or another!

May you all find health and the good spirit to enjoy it!

Warmest Regards,

Lara in Seattle

p.s. sorry for the long-winded post.

Maybe I just needed to vent, too? :-)