Hello all~New to this site!

Hello all~New to this site!

Always looking, seeking, searching for News! Any way to deal with MS, that seems to change moment to moment sometimes, day by day. I used to primarily deal with overwhelming fatigue, and heat related issues, but now vertigo is a daily occurrence, stumbling around in general, depression--which I fight hard against, esp. since I do Not want to resort to an antidepressant. I took myself off Wellbutrin years ago and was flabbergasted when I realized how numb I had become. It felt good to feel-even if it wasn't always good. It felt good to be able to cry! Been on Avonex, since 1994-was diagnosed in '91 when I woke up blind in one eye! So grateful to have a husband who does his best to help me & understand, going to every appt. with me. My newest "thing" is feeling like I'm vibrating internally-so much that surely anyone who touches me can feel it too. But no, apparently not! Most recent MRI actually included cervical & thoracic spine. A lesion on my neck, and major stenosis. Neuro sent me to neurosurgeon who said I need a fusion. Crikey! My back has 4, what's one more?!! But, NOooo, not ready for that!!! I pray, and just try to get thru one day at a time.

Glad to be here with yall!!!

37 Replies

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  • It's still me! Was not expecting life size photo!! Sorry folks!! Jeez........

  • @PetieJ

    Welcome. You will find this is a great group with a wealth of knowledge. Don't be afraid to ask or respond to a question. It doesn't matter how silly, embarrassing, etc it maybe. Believe me there is someone on here thinking the same thing.

  • Such as...what a ridiculous life size photo?!! Thanks rjoneslaw! Btw, I'm a jones!!

  • PetieJ , I had the internal vibrations back in April (I think). Only had it the one time but it was kind of interesting. I asked my husband if he could feel it, by touching me, but he couldn't. I really thought he should be able to.

    Glad to meet you but sorry it is under these circumstances.

  • Yep, Morilyn, the circumstances need a lot of work! Please forgive if I've misspelled your name. I have a Constant fight with my iPad for what I want to write vs It trying to out think me. Besides having a hard time focusing on some of the print that shows up! When I first felt the vibration thing, I first thought the bed was being hit over & over, then thought it was the vibration of the fan on the floor I was feeling thru the bed. I feel it the moment I'm conscious in the mornings. Bizarre! It eventually goes away after quite some time, other times it'll just start up again as if I just got plugged in. I like that you said it was "interesting"!! Oh, indeed!

  • Welcome Petiej. Glad you found us. Being we have a common bond called ms we are a family full of wonderful compassionate and some very knowledgeable people. We laugh complain share and if need be cry together. I also know about back problems. I've had 2 fusions and they say I need another but like you I ain't giving in yet. Have a degenerating disc disease to add to ms. There's always some one with similar symptoms to compare with so do be afraid to bring out whatever you need.

    I was diagnosed with rrms in April of this year and didn't even know what ms was. This site has been a tremendous help of knowledge and support helping me deal with this new life.

    Again welcome and God bless.

    Donnie

  • Thanks so much Donnie! I have noticed there are So many people here with back issues. Kind of a two in one site! It's kinda crazy! Being very newly diagnosed I'm very glad You found this site & any place else you get the info you need. Esp. a Good neuro!

    Thanks for your kind welcome and God bless You, too!

    Petie

  • Welcome!

  • Thanks so much melack01!! Greatly appreciated!

  • PetieJ, here's another welcome for you. Great picture, by the way!

    I so wish no one had need of this group, but it has been an amazing blessing to me. I was diagnosed about a year ago, and these wonderful friends have offered great support and information. I'm sure you'll find lovely new friends here, too!

  • Hi greaterexp! It was Your picture that encouraged me to bite the bullet and go for an upload!! I was expecting a photo in the Small round face up there! I think later I saw that 'something' isn't supported--you can tell I'm so tech savvy! lol Jeez, I was diagnosed so long ago I feel like an old woman. I was "prepared" for the dx, but to know so many are dx'd so recently just 'bothers' me. Just educate yourself as much as you can, don't let anybody try to tell you how you feel. I am happy I found this site--I don't even know how, cuz I wasn't looking for it!! Isn't life strange.....

    Thank you by the way for that very sweet complement!

  • There aren't many my age who are super tech-savvy! That's what 5-year-olds are for, right? We know enough to get by (until an "upgrade"). I'm glad you figured out how to post a picture. You're as cute as a button and have a wonderful attitude!

  • Ditto greaterexp!!!

  • You're right about surprises from the internet. I married one!

  • Now that's got to be a story! How cool-very happy for yall!!

  • I have been diagnosed with MS for 8 years my eyesight was damaged temporarily and I have Vertigo. I don't take nasty beta interferon as it made my life unbearable.

    My advice is get your b12 and folate levels checked and STOP TAKING AVONEX

  • Hey toph! Tell me More!!! My new neuro did check exactly what you mentioned--the 2 things Medicare wouldn't pay for-$237!! And they were normal. Actually, I had stopped the Avonex on my own back in Nov. more side effects added to an already too long lost and I was fed up. He asked me if I'd "consider" going back on it--in the event it's actually kept me from being worse than I am all this time. I tried Tecfidera-omg-thought I was gonna die from the acute stabbing abdominal pains and face blown up like a toad! That was about two weeks worth if that.

    But I'm sincerely interested in your experiences....God bless you

  • I take it that you are from the USA I'm from the UK and both countries have issues with kickbacks. It really stinks doctors are giving benefits for prescribing very expensive drugs to people who don't need them the trouble with being diagnosed with multiple sclerosis is that it is such a life-changing diagnosis that being the patient you are more in shock than anything else and you don't get the opportunity to look at all the evidence to suggest other conditions. I was lucky enough to stumble across a 77 year old retired GP who understands the bribery and kickbacks that doctors. His name is Dr chandy and he has a website and organisation B12d. Org

  • Hi toph~how're you doing?! You are correct-I'm from & in the USA! Tho many years ago I lived on Chelveston AFB & Alconbury, & Irthlingborough. The only place I've ever felt 'home'. Whereabouts are you? Sadly have to agree w/ the kickback issue. I've not yet had a chance to look at the website of Dr. Chandy. MS is such an all encompassing disease...it seems there's nothing it doesn't or can't effect. To get the right drug is a hit or a miss. Since you stopped the Avonex are you on something different now? There are so many compared to when I was started on Avonex! What has Dr. Chandy suggested you do? I so hope you're doing well, or at least better, toph.

    ???

  • Dr chandy is retired but suggested b12 injections. You can buy these from mycare.de

    Im trying to get b9 (folate) checked because I don't think I have Ms at all. I will tell you how I get on.

    I live near Edinburgh where they film TV series OUTLANDER. I have been told it is very popular in the States.

  • petieJ Welcome to the family! Sounds like you have your basket full of MS issues! I deal with my vertigo with meclizine, although my dizziness is not full fledged vertigo, just more of a disorientation with dizziness. That drug is very cheap. The depression really does need treating. I was on Cymbalta for over 2 years, and I was really numb, and it was not working for my anxiety. I somehow got the determination to get off of it, which was incredibly difficult. (Do not ever let anyone put you on that drug! It is meant to keep the person on it for LIFE! Read up on it thoroughly. It is horrible!) I weaned off very slowly, but had not read about all its withdrawal symptoms before I dropped it. I became very close to a complete nervous breakdown during that time. The deep depression that came on later, sent me back for help. I had consulted with a pharmacist relative, who suggested Lexapro. I wanted something that I could break in half and cut down on when I stabilized and did not need it so much. (During that bad time, I also was given Xanax to take as needed a couple of times a day, until the worst was over, and the Lexapro began working. I only took 1/2 of the .5 mg Xanax pills during that time. I have since dropped all of that.) Until I was stabilized, for a couple of months, I took the 5 mg of Lexapro. Now, I am taking only 1/2 of the Lexapro 5mg tablets. I have the benefit of no depression, I can think and feel like normal. It's working for me! (Also, I had previously taken Lexapro at two different times, and came off of it very easily.) If you need a little help in that department, please get it. Don't fight that ugly monster in your life. It takes too much energy out of you, and adds to the other stresses you have to deal with on a daily basis. Depression is not a sin to be dealt with, it is an illness that needs to be treated just like all the rest of our issues. You will have more of your life to enjoy with your family, if you are not fighting for your sanity. You will be in my prayers too! Our heavenly Father has given so much knowledge of medicinal treatments for our infirmities, and when we need them, we need to take them. Just like vaccines for flu and other things that we take for prevention of illnesses, depression needs to be treated also. You can still be in control, and enjoy life too. God bless you!

  • Hi 4fishylady! Oh my, you've had a battle and I'm so glad you've come out on the other side! I was on Wellbutrin for who knows how long and one day decided to stop taking many of the drugs I was on. I was able to get off of it without too much trouble. It's been close to five years now. My new neuro told me, didn't ask, that I was depressed! He was in a hurry that day so there's a lot of things I've not had a chance to actually discuss with him. His nurse, however, brought it up and said she suggested Effexor. I looked it up, and always read what the people taking a drug have to say about it. It sounded like what you said about cymbalta-you aren't meant to ever get off of it. Some people tried and just can't. It stops working, so the dose is increased, over and over again. There were just enough negatives that I don't want anything to do with it. My sister started Zoloft and it seemed to take forever before she could tell a difference, but she's doing ok with it. I'm glad you're having success with Lexapro! I know I'm fighting with the devil & that I've gotten thru the summer without any additional drugs is a miracle! But I know I am better than I was. I'm going to read up on Lexapro tho! I agree with all you said about the monster! God bless You!!!

  • PetieJ welcome! Glad to have you in the group.

  • Thanks so much cljones! My j is for jones btw!!

  • Us Jones got to stick together.

  • PetieJ I also have vibration. Makes me think of the song good vibrations, although it isn't always good . Ha Ha. Almost every night my legs vibrate but my whole body does sometimes. At least it doesn't hurt.:) We are nothe alone in this wild and wacky world called MS. One time we had an earthquake. I thought I was vibrating until my husband said did you feel that and I told him yes but I thought it was just me. Then we learned it was a small earthquake. That was a first.

  • Good vibrations indeed! That's funny! So mine starts first thing every morning and yours is at night--how weird! I developed that restless leg thing and omg! I'd rather be vibrating anytime of the day!! I can identify with the earthquake too! Hubby is always first suspect-Ha! I think he's run into the bed or the couch, etc. But you're so right-at least it doesn't hurt! Thank you Lord!! Hope you're doing well as you can be at this moment. The next one may be entirely different!!

  • I'm new this site also. I can relate to much of what you said. My pain is not horrendous, just constant. After being with a team for over 20 years, my last 2 Doctors moved out of state. After my next appointment I hope for good news. Always optimistic :)

  • Well, welcome mrshaney! Honestly, the names my iPad comes up with..it's a fight to get what I want!! I'm impressed that you've been with the same team of docs~it's always an Eeeeek moment to learn someone isn't going to be there anymore! Good for you being always optimistic. I find I need to be, no matter what the news. We just have to press on. I'll admit I have days that I can't press anything, but then I have to go with the flow or just not go period! It's been quite the adventure, such as it is. I've just got to believe the parachute will always open! I hope you're having a good day. I actually did a load of laundry this morning!!! Hubby's surprise for the day! God bless you mrshaney

  • Welcome PetieJ. I am glad you found this site. I have had MS for over 12 years and have learned lots to know about this disease and what it can do to you. It's nice to know there are people who understand. Ps I love your pic ❤️

  • Hey BigMar7! Oh you are way too generous re that photo! I was shooting for a little one but no can do apparently!! Bless your heart!

    I'm glad you're here too! I'm so surprised how many people are so recently diagnosed! But then I feel like an old woman to have been dx'd in 1991! That's a lot of crap going on for sure!! It's always continuing education isn't it?! Gets wearisome, but I'm grateful to have run into this site. I truly can't remember how/why I did. When I do remember, I'm gonna let you know!!! 🤔

  • @Petiej

    👋🏼 WELCOME!! We're glad you joined!There's truly a great group of folks here.

    You are a veteran of the MS experience, and I've had it for 12 years, but, you're right, it does seem like a lot of folks were dx recently. And many of them are older than one would expect for the newly-diagnosed.

    I recall that depression is often associated with the IFNs (if not attributed to them), so it may be good that you stopped the Avonex for that reason too. Of course, the MS dx can do that all by itself too! 🙄

    Anywho, no doubt you can teach us a thing or two about MS, so we look forward to hearing from you.

    Blessings,

    Lisa

  • Hello Lisa! Thank you & so far I've noticed there's truly good folks here. Like you! Yes-the newly diagnosed-it's their age that took me aback! What's going on??!! You've certainly had a lot going on over 12 years, I'm sure. When I stop & think of it, I can't believe how long I have, but wish I could say Oh, I'm so much better. For a long time it was just a diagnosis I was treating bcuz I had bigger issues going on with my back. My sister drives me insane--well, how do you know if it's your back or the MS? Well, cuz I live in this body! I would hope I could tell the difference!

    I have a new neuro I've seen once so far. He oh so kindly asked me if I'd 'consider going back on the Avonex'. Told him I'd think about it. Sooo, in July I did restart. In all these years he's the only doc who's ever ordered an MRI for more than just my brain--so I wonder how long the lesion has been on my neck?!!

    I've been debating for a loooong time whether to get involved in an MS support group. I'm alone too much-I don't want to believe I'll become a worse, more miserable human being bcuz someone's writing ads and articles saying so! I guess this could be a teachable/learning moment!?

    God bless you Lisa. Nom_De_Plume 🙂

  • Hi Petiej, I hope you're enjoying this forum so far. I too delayed for a long time, in joining a support group of any kind (not sure why exactly). I am very happy that I finally did, though.

    I am so sorry to hear you've had back troubles as well. My goodness! One is certainly enough to manage!

    It is interesting that you went back on Avonex. I am curious as to why your doc didn't propose Plegridy? (You are in the US, right?) That is essentially the "new and improved" version of Avonex--improved to the extent that it is administered SQ instead of IM, and QOW instead of QW. The needles are, therefore, smaller and easier to use, and the interferon dose is much less than what is. The QOW dosing schedule is by

  • ... (part 2)...Hi PetieJ Sorry for the typos! It is getting late here in Massachusetts. What I was getting at was that It is more comfortable to administer the Plegridy injections, and there are a lot fewer flu-like systems.

    It's also incredible to me that you had your first neck MRI recently, which discovered the lesion (s).

  • Welcome, PetieJ! It sounds a bit strange welcoming new folks to a MS forum, but what we really mean is we're really sorry you have MS, but so happy you found us! We look forward to getting to know you better and make you feel 'at home' here. 💕

  • Hi Tutu! Thanks so much. Very interesting observation! And funny but not! Such a conundrum! This is so outside my norm, but feel very okay here and glad I found you all. Good bless you Tutu!

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