logo
Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Hi, I am new to this site and to the forum and was just wondering if there is anyone else here living with Multiple Sclerosis? If so please say hello I would love to meet you.



Sponsored Post Advertisement
Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I am new, too, and have MS - so we already have 2 things in common. (I have a lot more experience with MS than with computers and forums;}

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Hi tucsongirl, sorry for the delay. I totally forgot I posted here. Nice to meet you. I was diagnosed in '93. I am 50 now, so it has been a fun 17 years . . . not! lol



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I've been checking back here - and had decided our introduction was the virtual equivalent of two people waving at each other on the interstate. lol We're about the same age, me older by 6 yrs, and officially diagnosed in 92 or 93 after almost a year of really scary vision loss, and speech loss ("wrspqin flimloq?") and falling, and terrible pain. Horrendeous damage showed up on subsequent MRI's. So. I'm dealing. How about you?

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Well I'm one of those rare individuals who was diagnosed very quickly. One minute I am in the ER thinking I was suffering consequences from a minor car accident and the next month or two I was told I probably had MS. Are you on Facebook? If so, we should friend one another so that we can do more than wave at one another. LOL

Last edited by Jen's Solitude; 06/24/10 08:38 PM.


Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I don't have facebook. The kids keep telling me about it: Mom you should get facebook. everyone can find you. and you could keep up with your friends. and. and. To which I say: I'm not lost. Everyone I know knows where I'm at. I already keep up with my friends;) To which they say: AAAAHHHHH! aaaahhhhh! AHHHHH! Send me a private msg. on here and let's see if I can retreive it on this wood burning setup I'm using.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
OK, message coming your way tucsongirl. Well, your pm is disabled, you could click on my profile and pm me though, or if you prefer you can e-mail me at the address shown.

Last edited by Jen's Solitude; 06/25/10 01:04 PM.


Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I just added myself as your UBB buddy (whats' this?), you do the same thing and then maybe PM will work. I really don't know what I'm doing. I did try to get onto Hub, but all I see is the top line of the page, the rest is completely blank except for a box that tells me to type 2 words that I cannot see. I guess this means I can add 'browser' problems to my list ha

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
LOL, oh my. You can try to refresh the page once you get on and see if the full page will come up. I will now add you to my UBB buddy, I don't know what it is either though. Here goes nothing . . . OK, that didn't work either. LOL

Last edited by Jen's Solitude; 06/26/10 01:32 PM.


Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
Well, until we think of a way to get in contact without posting email addresses for the benefit of spammers, we could talk here i.e. Have you tried any helpful meds? I took part in the Berlex Betaseron study for 2.5 yrs of the 3 yr. study. I had to drop out due to depression. I took the shots and had monthly MRI's. I don't know if I was getting placebo, half dose, or full dose. I'm betting against placebo b/c of the onset of the depression, and that the shots seemed to slow the MS. I take baclofen for the spasms. I've had many i.v. methaprednisone infusions, but have stopped taking them b/c I am getting to fragile, weight and bone-wise. And, I have discovered that antivirals shorten the really bad episodes.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Well currently I am technically on Copaxone. I gave myself a vacation from the daily shots but have to start back before I take the chance of a flare. Copax is good but I hate shots so am really waiting for the new oral pill to hopefully be approved around September - just a few months to go, I hope. I guess my biggest problem is fatigue. I have found success with Prozac so am not totally stuck in bed 24/7 now. I have also done my fair share of solu-medrol IV's even taking it monthly for a bit of time. Thankfully it has been about a year since my last flare. I am glad you have found antivirals help with bad episodes.



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I'm glad Prozac is helping you. It sure helped me when I was getting out of the Betaseron study. I hadn't needed it till recently (even tho the dr. thought otherwise:) Something not good happened! My face swelled up so big that I had to be taken to the ER for trouble holding my head up and swallowing. That dr. said he didn't think the Prozac caused it, so I continued, and the same thing happened again. I'm not happy about it because it helped me so much before. Maybe it was a drug interaction. The methyl-pred fried my thyroid, so I am taking a replacement (which I wasn't before). Or, maybe the 18oz bag of M&M's I polished off that week. lol So. It's summer. Hardly MS party time. I've started deleting the MSAA emails I get. They always want something: walkathon participation, donation drive, bike-a -thons, in this weather. in AZ. Not.

Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
BTW, have you had your thyroid checked? Once I started taking the replacement Levoxyl, my energy level came up remarkably. I also learned that soy products lower thyroid, which explained a lot of sudden weakness I'd had.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
That is a strange reaction. I have had swallowing/choking problems, but it was due to MS, not due to any pills. Have you been wondering if anyone else with MS is on this forum? I hope we get to meet more people, not that I'm not thoroughly enjoying your company. (smile) Yes about the thyroid. I was soooo hoping I had a thyroid condition because I knew I could be treated for it and the fatigue would clear up. My doctor kept testing it, but the results were all the same, my thyroid was fine. The MSAA is located in my neck of the woods. Their headquarters being just a couple of towns away. I don't get much mail from them these days. The National MS Society has lightened up to. I was bothered much more if I made a small donation, so I just stopped donating to them. Eventually they stopped bugging me so regularly. We are beginning another heatwave here in Jersey. I have been stuck hiding in the a/c for a good month now and we haven't even reached our real hot months yet. Hesitate to think about what July and August will hold. Thanks for the tip about soy products, I didn't know that. Well enjoy your hot day and I will try to do the same. Keep Cool! lol



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I see over 500 readers have visited the thread you started! Trying hard not to be self-conscience about that;) All ya'll interested in talking MS, please do jump in.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Maybe if we continue to babble on a generous soul will come along and join in so that we can have some diversity. Or maybe we should start a new thread and diversify on our own. :) If so, it is your turn, so fire when ready. You are guaranteed ONE commenter at the least. LOL



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I had a nice rant in Politics/Independent today. Ran out of steam before running out of opinion. I generally look on the bright side and I feel grateful daily. In that vein, I feel less conspicuous now (with the tremors and such). After a certain age, 'everybodys' got somethin' (wrong with them). So, everybody, if you've got somethin', join in. Disabilities have different names, but the challenges are pretty universal.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
What a coincidence you should mention tremors. I have seen a noticeable increase in my tremors when I am out and about. I can feel it takes a lot more energy to be active and the fatigue shows up rather quickly in my hands now. We use the tremors as a warning signal that I need to rest and/or cool off. When they reach a certain point though, we know it is time to head home. How is your walking ability? Mine is lousy. I think if I want to enjoy longer trips a wheelchair is in my future. I am going the exercise route right now though. Hoping to strengthen my legs gradually. I spent my healthier years exercising with weights, I believe it gave me a little more time, but after 17 years, the MS is starting to get the upper hand as far as walking ability is concerned.



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I can't stand still. I have to channel the tremors by standing feet wide apart, and swaying as if I had a child on my hip. For the most part, I Zen-out and can hide a lot of tremor with these methods. Unless something (heat, tired, or toads) crack my Zen. Handling small things, like change, is a chore, and I do hate getting those little pity looks from cashiers. Zen crack. Now we ARE going to be here awhile. A couple of months ago I had a very unpleasant (Court) encounter with the nasty little roach I married 27 yrs ago, and divorced 10 ago. When it was over, I had full body tremors that lasted over a month. I was exhausted beyond repair, and half-mad at myself that this small little man could make me so ill. And really embarrassed that it (I) was such a spectacle in the courtroom. In any other circumstance, I'd have stayed home and out of the public eye. I do have trouble walking, which is why I think MS Walkathons are so ridiculous. lol I keep breaking my toes, and with balance probs, a broken toe or two literally ruins my day(s). I've gotten religious about wearing shoes and slippers, and so far, no breakies recently. I had always been active, too, and I too think it has served me well with MS. Do miss heels, tho. The only way I could wear them now is if they came with a mannequin stand to hold me up. ROFL BTW, I can't remember how to start a new thread.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Above your user name is a tab, "topic options" click on it and one of the choices should be a new topic, which I am guessing means a new thread. At least when I'm this tired, it seems to make perfect sense, will have to wait until I get some sleep to know for sure though. Broken toes!!!! OUCH!!!! Glad you aren't enduring that at this moment. Glad you aren't being stressed out in your personal life as well. Stress and MS certainly do not mix! Take care and I will look forward to "seeing" you tomorrow. We finally got a break in the weather. I can breathe again! LOL



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I've been very tired, too. And my foot aches for some mysterious reason. After 4-5 days of constant pain, I am worn down by the most simple of doings. I've been reading about activated charcoal (uses), and decided to make a foot soak with it. What.a.mess. My foot did feel better for a while, tho. Hope you are feeling a little better, and rested. Because of the extreme heat I am on the same schedule as the desert wildlife. I really enjoy the very early am and late evening here, sharing space with a myriad of wild critters. I do feel blessed. Hope you have a good day!

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Your schedule of rising early sounds great. It used to be my favorite time of the day because I had the most energy. Seems the fatigue has taken that pleasure away, at least for now. Hopefully one day it will return. We are way hot again. Will be for the rest of the week. Have to duck and hide again, being careful not to even venture toward to door! LOL Keep cool and I will try to do the same. Glad to read the charcoal foot soak helped you. I assume it is not nerve pain? Is it spasms?



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
Last year my dr. wrote me an RX for a drug that he said will really help the fatigue. My insurance co. denied it, saying it was only approved for other conditions. My dr. was so annoyed. I cannot remember the name of the drug, but will find it for you. Will do a search for either the ins. co. denial letter or do an internet search for "drug helps MS fatigue" till I recognize the name. Have you ever tried these type of drugs and did they help? I have had good success with bladder control drugs. As to my foot, it had to be nerve pain due to the feeling of cold, the humming, the severe ache. Who knows if it was the soak, the charcoal, or my finding the pressure point that seemed to release it... It wasn't spasms, b/c the baclofen didn't even touch it, even double dose. When the fatigue, or pain gets me down that bad, I swear I'm willing to go Big Fat Greek Wedding and "put some Windex on it". ha. I'm pretty much up for anything that might help.

Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
Want to pack up our virtual U-Hauls and take the virtual Interstate over to Neuromuscular Diseases? The forum is starting up for MS and other NM's. YAY!

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Sounds good! See ya there.



Joined: Jun 2009
Posts: 40
M
Newbie
Offline
Newbie
M
Joined: Jun 2009
Posts: 40
Welcome to the forum you two! Don't mean to 'eavesdrop' on your postings, just wanted to welcome you and say hello!

Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
Hey Monica! We'd been waiting for weeks for somebody to join in. Geez. I hope that isn't eavesdropping, cause I read EVERYBODY's posts! lol Isn't it wonderful to have such a place to exchange ideas and views and learn from other peoples' exp? I only wish I'd found it sooner.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Hi Monica. Yes, we are both very happy to meet someone new. Not that we aren't thoroughly enjoying the company of one another. ;) Tuscongirl, I just noticed there was a post before the one suggesting we switch to another forum. Sorry I missed it before. I take Lyrica for the nerve pain I experience in my right leg and I have had success with Prozac for my killer fatigue. My GP decided we should give an "oldie" drug a try since nothing new was working for me. I am so happy he encouraged me to give Prozac a try because it is the only drug that has given me relief from the fatigue that has side-lined me for almost 2 years now.



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
Still looking for the drugs' name for the fatigue, (it isn't the one you named in the other forum). I tried the Lyrica but it made me so weak and tired. I have noticed that I am becoming more and more drug sensitive. Dr. mostly gives me child-sized doses.

Joined: Jun 2010
Posts: 16
Newbie
OP Offline
Newbie
Joined: Jun 2010
Posts: 16
Hey tucsongirl! Hope you are hanging in there? I'm trying but it is very hot here in Jersey! lol Been busy but just wanted to drop by and say howdy! So . . Howdy! :-)



Joined: Jun 2010
Posts: 69
T
Amoeba
Offline
Amoeba
T
Joined: Jun 2010
Posts: 69
I'm glad to hear from you!

It is hot. Humidity is climbing here - in front of our summer monsoon storms.

The tv says 101, the thermometer on the outside brick wall (in full sun) is reading over 120. Baked lizzard, anyone? lol


Page 1 of 4 1 2 3 4

Link Copied to Clipboard
Brand New Posts
Inspiration Quote
by Angie - 09/25/22 08:09 AM
Psalm for the day
by Angie - 09/25/22 08:05 AM
KULFI FINANCE: LEND AND BORROW CRYPTO ASSETS AT A
by Jamal molla - 09/24/22 07:59 AM
KULFI FINANCE: LEND AND BORROW CRYPTO ASSETS AT A
by Jamal molla - 09/24/22 07:59 AM
Tea Samples
by Angie - 09/22/22 09:31 PM
Tailgate Recipes
by mary-tea1 - 09/22/22 12:47 PM
Who's Excited For Football 2022
by mary-tea1 - 09/22/22 12:43 PM
Where can one buy Baseball Cards?
by mary-tea1 - 09/22/22 12:40 PM
Quick and Easy Fall Sewing
by Cheryl - Sewing Editor - 09/21/22 10:14 PM
Forever Essential Sewing Basket
by Cheryl - Sewing Editor - 09/14/22 02:58 PM
Sponsor
Safety
We take forum safety very seriously here at BellaOnline. Please be sure to read through our Forum Guidelines. Let us know if you have any questions or comments!
Privacy
This forum uses cookies to ensure smooth navigation from page to page of a thread. If you choose to register and provide your email, that email is solely used to get your password to you and updates on any topics you choose to watch. Nothing else. Ask with any questions!


| About BellaOnline | Privacy Policy | Advertising | Become an Editor |
Website copyright © 2022 Minerva WebWorks LLC. All rights reserved.


Powered by UBB.threads™ PHP Forum Software 7.7.5