This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,
I have admit that my husband signed me up for this website. I think he got to the point that he didn't know what else to do with me, so he figured he would hand me over to you guys !!

I was just reading a few of your comments and I feel like the old woman on the block. I just turned 50. I was diagnosed with MS in 1993 and began using Betaseron in June of 1994. My doctor tells me that I could be the poster child for Betaseron, because with the exception of some problems with redness at the injection site, occasional flu-like symptoms after my injection and some depression, I have done extremely well. I have some residual loss of feeling in my fingers and toes on the left side of my body, occasional fatigue that puts me to bed for a while, and a severe aversion to hot weather (you know, like watching butter melt out in the hot sun). I truly am a blessed woman.

So what do I have to complain about? Not much!! But something has been happening over the last few years that I can't find answers to, and I'm not sure if it is MS related or not. I need some imput from others.

In the last few years, I have begun with problems with insomnia and depression that is getting worse and beginning to severely affect my life. I know that these are symptoms of MS, but I also am at an age where my body is going through other changes that could possibly be the culprit. As if that weren't enough, I was diagnosed with thyroid cancer a couple of years before I was diagnosed with MS. Thyroid problems, MS and menopause can all have some of the same symptoms. Three years ago, our youngest child died at the age of twelve, so many doctors want to blame my symptoms on that. Yeah, that's tougher than anything that I have ever had to face, but God has been gracious and we've had a great support system, both psychologically and spiritually.

My husband and I are missionaries in another country, and even though I have an excellent neurologist in the US that I see twice a year, I need to have help here, where and I live and I haven't been able to find that. I would be very appreciative if anyone has any comments or experience on MS and menopause, or any thing else that would pertain to my circumstances.

If you have any other questions for me that would help you understand what's going on with me, please feel free to ask. I've always been very open about my MS and learned early on how to accept what was happening to me, without giving in to the disease or giving up.

If nothing else, it has been beneficial to me just to put my thoughts and feelings on paper (will kind of on paper).

Thank you for your kind attention and I eagerly await your comments.

Patagonia C

You may think that 50 is old--NOT SO. I have you beat--I am 57, diagnosed with MS in 1992.

My question for you is "Do you have sinus infections, allergies, sinus drainage--anything that causes mucous?" Do you even clear your throat often? I think I swallow lots of mucous (constant sinus drainage); I think this prompts my pancreas to produce excess insulin, which starts the damage and immune response (I am not a believer in the "autoimmune disease" story.). By the way, I am the site's resident believer in this insulin angle. No one has to agree with me, but there is usually tolerance and respect for different ideas here. Feel welcome to express yours here too.

I, too, would like to say welcome. I have found this site to be very helpful and the people to be very kind and informative. I think you'll find the same thing. I wish you all the best!
Lori

hi there, that's great that betaseron has been nice and effective for you! generally, i am too much of a chicken for pharmaceuticals!

anyway: i think most "non-newbies" will anticipate what i'm about to say...!

patc u may want to consider having your serum 25hydroxycholecalciferol tested. a b12 test may also be useful. vitamin d and also b6/b12 can be good for mood.

i could go on about the research but it's all been posted before!

the fact your insomnia and depression is gradually becoming a problem over time sent up a flag for me in particular, because we convert dietary/oral supplement/sun exposure vitamin d less efficiently as we age.

in my research i have found that the currently accepted normal ranges for both b12 and d are viewed by research scientists as rather low. and here's a tip: don't get your b12 tested while metabolizing any alcohol!

normally i wouldn't lay all that on someone in reply to their intro - but you are so specific with your question that i figured it was okay

tell your hubby he's a smart fella and that you'll find lots of support here good luck!

Thanks so much for the welcome and for all the advice. I love the fact that this forum gives people a chance to interact without having to be in total agreement. I am very appreciative for the help and will be taking all of your advice into consideration. I knew about the different vitamins, but I hadn't heard about the insulin angle. And yes I have sinus drainage, infection, etc.
THANKS GUYS. I'll be in touch.
pataC

PataC

I'd like to extend a welcome as well. I was diagnosed at the age of 57 after they took me off HRT (coincidental or not) so I've spent time reading about hormones.

Your mention of insomnia and depression reminded me of this recent article Your Brain on Menopause

we hear very little about what happens when the hormone receptors in our brain begin running on empty!

I'm all for physiologically balanced bioidentical hormone levels (cortisol, DHEA, estrogen, progresterone and testosterone) at any age, men and women, to help manage MS. And, one of my big questions is whether or not one of the factors in the shift from RRMS to SPMS is the decline in hormone levels as we age, especially because preclinically they exhibit seemingly relevant and potent neuroprotective properties. That is, with the exception of the stress hormone cortisol, which may be damaging. Of course, three of them (DHEA, estriol and testosterone) were also positive in Phase I MS clinical trials.

Anyway, welcome PataC--you might want to check out the Golden Age thread too and always feel free to use the pm option.

Lynda Carol--this is for you.

Research shows that as testosterone levels decrease, insulin production increases

Don't forget that in people with MS, they recently found that a higher percentage of women than men had low testosterone levels. Maybe low testosterone levels precipitate hyperinsulinemia? Just a thought.

Take care everyone

Sharon

Shayk, did you consider starting HRT again?

ljm--

Absolutely, positively yes.

I live in a very medically conservative community and it took me well over a year to locate a physician who was willing to work with me on bioidentical hormone balancing. So, in the interim I managed to get myself in an HRT clinical trial (synthetic estrogen + bioidentical progesterone) at a local university. The study hasn't been unblinded yet but I'm personally dying to find out if the single relapse I've had since diagnosis occurred when I was on placebo in that trial. I know that wouldn't really mean anything but I'm curious nonetheless.

And, to the extent I'm on 8 mg. of estriol and 500 mg. of progesterone (I had none of that) I sort of consider myself to be on "individualized" HRT now.

Sharon

Hello Pata C!

I think I am winning the race on age - I was diagnosed in 2003 at the age of 60. So, three years later at 63 I am trying to enjoy life with MS. I feel fortunate that I am one of the lucky MSers who can continue on with a somewhat normal life.

This forum is a wealth of knowledge and support - welcome!

I would suggest you go back and read postings from "Shayk" referencing the hormone component. Unfortunately, we will probably experience the medical issues that everyone else does (i.e. arthritis, cholesterol, allergies). It is hard to separate the MS from the other medical issues, especially as you get older.

Take care,
Sharon (from Colorado)

I had been taking multivitamins, calcium and vitamin D and got lazy and stopped taking it on a daily basis. Do any of the rest of you get tired of popping pills, and in my case injections? I do eat a really balance diet, much better that what I would eat if I were in the US. Anyway, I started back with the vitamins this morning, along with a B complex vitamin. I know that can't hurt anything, and I'm going to start looking for a gynecologist that will listen to me. The problem is that I live in a small Argentine town where there aren't that many good choices as far as doctors are concerned. We'll see what happens. You guys have already given me back hope. I was beginning to think I was just going off the deep end (And I don't have far to go ) I look forward to your comments. Keep them coming!!

hi patagoniaC,

I see you've been mobbed already by the welcoming committee. So let me just add fuel to the fire-- hello and welcome!

I second the recommendation by jimmylegs for the test for 25-hydroxycholecalciferol (also known here where I got my test as "25-hydroxyvitamin D"). In information first posted by Legs, Dr. Yadhu Singh of South Dakota State listed about 30 cells in the body that have Vitamin D receptors--including the Islets of the pancreas (where the hormone insulin is produced) and activated T cells (often mentioned as damaging in MS). Perhaps this explains the lower prevalence of MS in people closer to the equator (where they get more Vitamin D from the sun) This test costs only $68.75 in my area.

I also recommend a "fasting serum insulin test." My expectation is that insulin is up and Vitamin D is down. I believe there is a connection.

I just ofund this site and figured I would say hi here and join some of the other older folks.

I am 55 and just got diagnosed at the beginning of August 06. So, I am new to everything. Not sure what treatment I will follow since I am still researching all my options.

Dove

Welcome.

There's lots to research while you're trying to decide on treatment options. This is a great place for information, lots to take in and consider, but well worth your time and effort IMO.

I'm in the process of reading Lean on Me by Nancy Davis, who has MS and founded the Erase MS Foundation. One of her basic principles is to do exactly as you're doing, your own research. So, I'd say you're off to a good start here.

Again, welcome.

Sharon