New group!
psmd
Posts: 764 Member
For some reason I am up kind of late, maybe because I slept sooooooo much last night, felt super tired for some reason. Anyway I noticed there is no MS group and there are a few people here with MS (I am MFP friends with a few) and thought it might be nice to have a little group to talk about either MS stuff or health stuff in general...I sent out some invites but feel free to add yourself to the group as well. Also free to introduce yourself here and what your story with MS is...here's mine (the short version!)--
I am 32 and was diagnosed in March 2011, earlier this year. I think I have had it for another 3 years but it went undiagnosed, I even had an MRI in 2008 that was normal. But until this year it was very vague symptoms, a little numbness here and there. And in 2009 I had double vision for a week, and went to the ER (at my hospital!) and the doctor I saw said everything looked normal in my neuro exam and didn't do imaging at the time. Anyway in March all of a sudden I had numbness from my feet up to my waist, and after a week or two some stiffness with walking...went back to neurologist and the MRI was positive. I opted not to start any disease-modifying medication (did do steroids at that time though), until I had a couple of smaller episodes in May and then again in July. So I started Gilenya (fingolimod) and am taking cinnamon most days and so far so good. On an aside, with the cinnamon, I ran out last week and didn't get more, and noticed that I am having more symptoms (temporary tingling in my fingers and feet) after working out or drinking wine, which wasn't happening before. So maybe the cinnamon has been helping? In general the main thing that has been affecting me has been fatigue. I have always been a tired/sluggish person all my life, so I'm not sure if that's just me or the illness. Anyway here I am on MFP trying to lose weight. Unfortunately getting this diagnosis was what it took to jumpstart getting healthy finally, go figure!
What about everyone else? Would love to hear everyone else's stories! By the way I'm a psychiatrist, so maybe that explains my interest in hearing about other people so much
I am 32 and was diagnosed in March 2011, earlier this year. I think I have had it for another 3 years but it went undiagnosed, I even had an MRI in 2008 that was normal. But until this year it was very vague symptoms, a little numbness here and there. And in 2009 I had double vision for a week, and went to the ER (at my hospital!) and the doctor I saw said everything looked normal in my neuro exam and didn't do imaging at the time. Anyway in March all of a sudden I had numbness from my feet up to my waist, and after a week or two some stiffness with walking...went back to neurologist and the MRI was positive. I opted not to start any disease-modifying medication (did do steroids at that time though), until I had a couple of smaller episodes in May and then again in July. So I started Gilenya (fingolimod) and am taking cinnamon most days and so far so good. On an aside, with the cinnamon, I ran out last week and didn't get more, and noticed that I am having more symptoms (temporary tingling in my fingers and feet) after working out or drinking wine, which wasn't happening before. So maybe the cinnamon has been helping? In general the main thing that has been affecting me has been fatigue. I have always been a tired/sluggish person all my life, so I'm not sure if that's just me or the illness. Anyway here I am on MFP trying to lose weight. Unfortunately getting this diagnosis was what it took to jumpstart getting healthy finally, go figure!
What about everyone else? Would love to hear everyone else's stories! By the way I'm a psychiatrist, so maybe that explains my interest in hearing about other people so much
0
Replies
-
I am 37 years old and was diagnosed 1.5 months before my 30th birthday. My symptoms and diagnosis occurred within 4 weeks. I had been having some numbness after hard workouts and when I took a hot shower so went to the doctor and they completed an MRI on my spine and scheduled a neuro consult. Between the time I had my MRI and my scheduled appointment to get the results my right eye became extremely sore in the socket. It was painfult to move it back and forth and I noticed that when my eyes were closed and I heard loud noises there were shocks of light behind my eyelids. I made another appointment to go back to the doctor, the general practitioner, and he didn't have a clue. He contacted the neurologist, who I had an appointment with in two weeks, came back into the exam room and said, "The doctor says it's probably early on-set MS so you should just keep your appointment with him." And he walked out.
Really?!?! This is what you say to someone and then walk out of the room. Needless to say I was a disaster. I made an appointment with the eye doctor about my painful eye and he diagnosed optic neuritis. I kept my appointment with the neurologist, got an MRI of my brain, got my diagnosis and was immediately infused with steroids. I have since had one relapse four years ago during a very stressful time and my only returning symptom then was the optic neuritis. My vision has been corrected back to 20/20 with just a slight change in color perception and very little damage to the optic nerve. I have been in remission and feeling good for the most part. When I was diagnosed I read all that I could about alternative management of MS and began cutting gluten out of my diet. I also cut down on refined sugar and started taking better care of myself through diet and exercise. I have been on Copaxone for 7 years but only take 3 shots a week.
Lately my stress level has increased, as has the amount of gluten in my diet and my physical fitness has decreased. I find that I am tired often and earlier than normal. I too wonder if it is my lifestyle or my illness. When I start to question I remember what my Nurse Practitioner at the Neuro says, "What difference does it make? If you're tired, rest. If your not, carry on." I am determined to get off the gluten and back on the bike/treadmill to keep this under control and appreciate all the help/support/guidance of my MFP friends.0 -
Those are some great stories, mine is long so I will shorten it up. In 2009 I fell unconcious to the floor, and had to be taken to the ER. The ER doc treated me well and we all joked about heat stroke, I was living in TX at the time and it had been hot. He sent me for MRI's just in case and after I got out of the MRI everything changed. I suddenly had lots of help getting from the table and they insisted to put me in a wheele chair back to my bed. Everything got really rushed and the ER doc came back in to discharge me. He said, "I'm not the kind of Doc who can fix the problem you have, I'm really great if your arm is falling off and you need it stitched or if you have been shot or stabbed (we were on a military base). I believe after your MRI that you have MS, but I can't diagnose that with certainty so I'm going to have you see a neurologist tomorrow" And there I was, my 1st neurologist said Nooooo It's just non positional Vertigo. 2nd Neurologist said It was Sleep Apnea. I move to New Hampshire and have another almost passout eppisode. See a neurologist, he does an MRI. 5 Leasons and clearly showing positive for MS. So a diagnosis... Don't start therapy and then go deaf, then start Rebif, I'm allergic, Start Copaxone, I'm allergic, Start Avonex, Suprise suprise I'm allergic. Attack after Attack 12 that year, blind on one side, then blind on the other, deaf several times, no feeling from the waist down. Can't sleep can't stay awake, just can't function and have to quite my job. I've been on Betaserone successfully for a year now and we think (fingers crossed) that I have been in remission for 6 months. January I have a checkup and probably an MRI, and I HOPE that it will show there has been no progression.
I am 100lbs over weight and I know this isn't helping with the exhaustion and dealing with everything associated with the MS. But my legs and arms are too muscular for my injections. So much so that it has eaten through the muscle and I can no longer use those areas of my body. I go between dread that if I do loose the weight the drug will no longer be an option and I may go back to 1 or 2 attacks per month. I have very low blood pressure and pulse so G is not really an option.
I am trying to reasonably loose the weight. This past week my intestines shut down and I had to be hospitalized. The doctors didn't feel that the MS was the cause of the problem, but I'm terrified. I'm trying to have a better diet, eat healtheir and all those things. But I have to face that I'm just plain tired and some days going from my bed, to getting the kids to school and back is almost all I can do.0 -
@tberry--I didn't know gluten was connected to MS at all, intuitively it makes sense, I will have to read about that for some info.
@rocky--wow that is some story! you sound like you've been through so much so far, sorry to hear about all that! hopefully you're out of the hospital and feeling better, and keep feeling better as time goes on. sometimes the struggle isn't easy but it makes it worthwhile when you finally get through things. and I'm sure you're an inspiration to your family and kids as well.0 -
Hey all!
Love this group already! Networking with others with MS is very important for me. I've learned so much since my diagnosis in 2007 from others sharing their experiences. It's made me a confident advocate of my health. Will post a little tomorrow here, but tonight I am beat! I swim daily and by this time of evening I am done! Reading your posts and looking forward to chit chatting with you all. /take care0 -
I love that the group has already grown to over 30 members!!! I also want to add, it's hard for me to keep up with who is new, and will try to add you guys as friends, but feel free to add me (or anyone else in the group). Nice to see everyone here 0
-
I agree with ya psmd
Love this group, thanks so much for starting it! I've made some great friends here. 0 -
Hi Everyone,
A MS group, that's great!
I would like to introduce myself. My name is Janine, 37 and I'm from the Netherlands. I just joined MFP two days ago, attempting once again to shed the extra pounds I've collected mostly during the last year and a half. I started somewhere else, but they did not have an Android app. And somehow I felt that easy access to 'keeping score' might make it easier to stick with it.
I was officially diagnosed in 2002 after years of weird sensations. In 1998 I had my first really heavy exacerbation. I had difficulties walking and most my body was numb. It took about seven months but I recovered. But I was not diagnosed until 2002 when number two came along, with similar symptoms.
I am pretty stable at the moment. I have a cruch and a wheel chair. Fatique and a failing memory are my worst symptoms.
My weight has always been more than it should be. The absolute high during my adult life was in college 120kg (265lbs) and my low 92kg (203lbs) The last ten years I was pretty steady at about 96kg (212lbs) until I quit smoking nine months ago. I'm still doing great when it comes to that, but my weight went up. Just to complete the picture, I am 1.86m (6,1ft)
I want to start small, so I'm going for 4kg at first. Meanwhile hoping to get some excersise routine going, which is just hard when you're 'blessed' with MS.
Hopefully I can get some tips over here!
*hitting ENTER......*
And nothing, except a big error message... But I'm not giving up... So this is attempt number two...
:bigsmile:0 -
Nice to meet you Janine Sounds like a tough story but you're doing all the right things! Quitting smoking is hard but one thing I learned (after I was diagnosed) is that smoking is a risk factor for MS; I haven't in a year now and am really happy about that. Not sure what tips I can personally offer but I would say, using MFP to its fullest extent is the best way to do this, logging everything and reading the message boards (it took me a while to get into both). As to fatigue--I get very tired in particular after a work out, and sometimes have to nap extra, but then the rest of the time I have noticed my energy is better than it was before. And a healthy diet helps a lot too. Anyway good luck and will add you as a friend! 0
-
Hi Janine Welcome and thank you for sharing your story. And big congratulations of quitting smoking, that's hard on it's own to overcome. Myself just hit my fifth year smoke free. I was dx in 2007 and quit right about that time, This is a great group, and I am sure you will find some useful tips from it's members. Best of luck and I am adding you as a friend. -Be well 0
-
Hello Everyone,
Glad I found this group. I was dx in 2007. Started w/ a bit of numbness and Optic Neuritis in my right eye and about a million tests I was finally diagnosed w/ MS. Since that time, I become close friends with a lot of people that have it.
When I was first DX I was about 220, I started taking Betaseron which I hated. Made me feel like crap almost every day. I was doing less and less and my weight got up to about 260. The fatigue was just horrible. After talk w/ my doc, he said that losing some of the weigh will help alot. (That was the basic jist of the conversation) So I made a decision that it was time...and thats what I started to do. I started with just walking, then later added in a little running into my walks, and after some time I found I was added walks into my runs. in 2009 some of my friends convinced me to (well we had a $100 bet to be honest) to do a triathlon. (I get $$ motivated sometimes!!) So I added swimming into my routine. I noticed that I started to feel better. I still hurts getting out of bed, but I had more energy during the day, and I just started feeling good. The Betaseron was still kicking my *kitten*, but I could live with it. On may 7 2010, I completed my first triathlon at about 230lbs. I finished DEAD last for age group, but I didnt care - I finished.
I cannot describe what it was like crossing that finish line.The wave of emotion was just describable. It was the biggest high I have ever felt in my life. I came home from that race on a mission. I was done letting this thing called MS take me over on its terms, if it was going to take me, it was going to be on my terms.
Its a long story, but its kind of funny, once you make a decision like that, many things come into clarity. I noticed that in the past year my circle of friends started to change. From people that were always down on themselves, to very positive people. From people that sat inside all day, to people that would go hiking, biking, whatever than sit around all day. I was slowly becoming one of these people and it was great.
In January a group of about 15 of us signed up for a 1/2 marathon. Training was actually fun. When you have people that you have to be accountable to, it kind of motivates you. In March of 2010, I ran my first 1/2 marathon and finished in 2:22. (I was 210lbs) I was ecstatic. Crossing that finish line, was just crazy. The single longest distance I had ever run. Little did I know what was coming up!
We had a post race party and the topic of "whats next" came up. There were a few small races coming up which I already signed up for but there was discussion about doing an Ironman. Im all about going for it, dont get me wrong, but I just couldnt see myself doing an iron man. We ended up deciding that we would do a 1/2 ironman, The next week a bunch of us signed up for the 1/2 and a few signed up for the full.
It was at this time where I just couldn't handle the BS anymore and I stopped. I waited about 2 months to tell my doctor, but during those 2 months, I felt really good. About mid june and hot while on a long bike I felt it come on. My right hand started to go numb and about 15 mins later, my right eye started to go dark. I made it back home ok, and called my doc the next day. He changed my meds to Tysabri and I LOVE IT! One day a month I get my infusion, I go home, sleep the rest of the day and wake up great.
Long story short, October 30, 2011, after 1.2 miles of swimming, 56 miles on the bike, 13.1 miles of running, 6 hours and 48 minutes later I crossed the finish line and it was amazing. (195lbs)
2 week later, I was at the docs b/c of my right knee. I tore my ACL a bunch of years back and it was started to bother me again.
After an MRI and Xray, He recommend surgery to fix torn cartilage and remove some spurs that have formed. I was scheduled for surgery on Dec 1st and would be out of commission for 6 weeks.
The period between Thanksgiving and NewYears is what I call an Eaters Paradise. And thats what I did. Call it depression, laziness, whatever, but it did not take long to fall into my old ways. In that span I jammed on almost over 20 lbs and felt like ****, it took a small intervention from my wife and some of my friends to make me see it - but now that I do, i know its time to fix it.
I weighed in last week at 216lbs. My goal is to get to 180 and compete in my first Ironman in Oct of this year. MS will show itself more often, like it does every day (Brain fog just sux) But like I said, It will take my body on my terms. I know that losing this weight makes me feel better, so thats what Im going to do.
Anyways, thats the short version of my story, Im always looking for friends so we can help motivate each other. Going it alone is always harder, there is nothing better than to have someone to turn to for help, support, or just a smile.
An0 -
Hi Rob, welcome to the group. A great story - and maybe a little kick in the butt?? Maybe this year instead of volunteering to help at the MS Walk/Run I should participate instead of just feed the hungry hoards?
:happy:
I'm of the same opinion as you - I have MS it does not have me!0 -
Rob- what an inspirational story! That put such a smile on my face just reading it! You have to be so proud of yourself and know that you can once again meet your goals. What a positive outlook- I'm so glad you're part of our group now!0
-
I agree very inspiring story! So did you have your surgery, how did it go??0
-
Sry - just saw your reply. Yup - had the surgery on my right knee on Dec 1. Scoped, scrapped and repaired. Went thru 6 weeks of PT and got the green light to start running again min January. My speed & endurance on it has dropped a ton but my goal is by mid march to be under a 10 min mile. (Im about 11 and change right now) Need to take baby steps so I dont hurt it again. I have been biking/spinning a ton which is great, but the runs have been few and far between. Just started this week doing a few 15-20 min runs 3mins run 1 walk. Going to keep this up for another week or so then move to 30 mins.
Funny thing is I did a 75 min spin class this morn, then went to the treadmill after. Some people saw me running while they were getting out and were commenting to me like "whats up - didnt get enough punishment in that spin class"! I know Im having a few beers tonight - so might as well prep for it!!0 -
Hi everyone!
I'm really glad I found this group. My name is Christine. I'm currently 29 years old. I'm a SAHM of 4 kids ( 2 pregnancies, 2 step ).
I started having problems when I was 15 years old. I dealt with a lot of depression/anxiety at this time. My parents always thought I was just being rebellious, but in reality I was just trying to fight what ever was going wrong with me.
16-17 years old (1999-2000) I ended up being hospitalized because I couldn't stop vomiting. They ran test after test on me. Finally they diagnosed me with H-Pylori. I left the hospital still being very sick and unable to return to school. Medications they gave me eventually stopped the vomiting, but I never returned to normal. In fact things got worse. My vision became blurry, my balance was off, my limbs kept going numb. So more tests came about. I had my first spinal tap when I was 17 years old. It was the worse experience in my life. I ended up having spinal fluids leak and becoming so sick I couldn't get out of bed. My neurologist at the time did not feel comfortable diagnosing someone so young with MS. So, I was not diagnosed at this time with anything.
Through all of that I fought my way through school with the school helping me to keep up with assignments I missed and everything.
After school I went on with life as if nothing was wrong. I moved to TX with my first husband. My first daughter was born in 2002. After she was born I some problems with my vision and started seeing a neurologist again. It was always just check ups though it seemed. Never any real testing done. So I continued on with life.
2007 I had my second daughter with my current husband. Shortly after she was born I ended up having optical neuritis in my left eye. My family doctor sent me to a neurologist up here in IN after my eye doctor told me nothing was wrong. Testing started right away. My 3rd spinal tap wasn't bad at all. They had the monitor vision ( I forget what it's called) and me freaking out they had to drug me up pretty good. I was finally diagnosed in Sept. 2008.
Hope to meet some good friends here!! :bigsmile:0 -
Hi Christine,
Wow, that is quite a journey you have been on. It amazes me that they wouldn't consider MS sooner if your neurologist mentioned it early on. And the whole can't diagnose it because of age is so ridiculous. They used to say children couldn't be diabetic too! I seems like such a shame that so many people have to go through personal hells in order to teach the medical community to think outside the box.
I'll glad you finally have a diagnosis, are the treatments working for you? What happened with the optic neuritis? I have the same thing in my left eye - I'm left with limited night vision, some colour vision lost and occasional pain in both eye sockets.
You'll find a great group of people on here trying to get healthy and lose/maintain weight.
Bea0 -
I was pretty upset that they hadn't diagnosed me when the first round of testing went and the neurologist had it in mind.
I was on Avonex for about a year. I always had the flu like symptoms it seemed though, sick in bed, depression was bad so I was taken off of it. Right now my neurologist and I are trying to decide between Copaxone and Gilenya (sp?).
My vision has gotten better, I can see. It's never been the same though. The pupil is always larger than my right eye. My eyes are ALWAYS dry. Night time bothers me sometimes.0 -
My eyes are always dry too! The latest drops they have me using seem to be working really well. They are called Systane Ultra.0
-
My eyes are always dry too! The latest drops they have me using seem to be working really well. They are called Systane Ultra.
That may be what I have. It's real thick and I can't see when I put them in so I only use them at night.0 -
Went to see my optometrist yesterday because I had problems with my left eye - didn't want to miss an optic neuritis flareup. He thinks it's just over use of the eye and stress. I've been using drops up to 10 times a day just to get the dryness out and he told me to only use the drops that I have 2-3 times daily and the rest of the time to use a non-medicated kind - I've got Refresh for that.
So, at least I don't have to worry about the ON throwing a monkey wrench in things right now.:happy:0 -
Just joined the group...I haven't beem diagnosed with MS but I just posted a blog for my bio on my profile; please read it....I think I may have MS. Many of your stories sound like what I'm experiencing....my hand is throbbing as I type this...0
-
Just joined the group...I haven't beem diagnosed with MS but I just posted a blog for my bio on my profile; please read it....I think I may have MS. Many of your stories sound like what I'm experiencing....my hand is throbbing as I type this...
Hi, sorry I can't find your blog - and honestly don't have time to dig around looking for it. You've got your profile closed to all but friends so I can't find it that way either. I'm proud of myself that I figured out how to log in and do what I have managed to do but I just am not as technically savvy as a lot of people on here.
If you can tell me how to find you blog or post a link here that would help. 0 -
Went to see my optometrist yesterday because I had problems with my left eye - didn't want to miss an optic neuritis flareup. He thinks it's just over use of the eye and stress. I've been using drops up to 10 times a day just to get the dryness out and he told me to only use the drops that I have 2-3 times daily and the rest of the time to use a non-medicated kind - I've got Refresh for that.
So, at least I don't have to worry about the ON throwing a monkey wrench in things right now.:happy:
Glad to hear it isn't a flare up!0 -
Just joined the group...I haven't beem diagnosed with MS but I just posted a blog for my bio on my profile; please read it....I think I may have MS. Many of your stories sound like what I'm experiencing....my hand is throbbing as I type this...
You need to get into your options and make your blog public. 0 -
Just joined today.Everyone calls me Nonni. I'm 63, and officially diagnosed with late onset MS, a year ago,suspected,3 years ago. Had a major exacerbation(Doctor thought it was a heart attack.because I'm overweight)No symptoms of heart attack,but I went through the steps. Then she thought it was low blood pressure and diabetes. Changed docs. Next Doc. thought it was weight and low blood sugar. So long Doctor #2. Found Doc#3. She did all the blood work,nothing. Then she realy listened to me. Had me walk across the roo,close my eyes with my arms out, and a few other things. She said I needed a nueralogist. Sent me to one,40 miles away.He had MRI's set up,VEEPs and a few others. 10 lesions and a probabable dx of MS Then more test. Developed Trigeminal Neuralgia ayear ago. Definite dx of MS.
Gas was getting really expensive,so thought I would try to find a doctor closer, I did,but she said she didn't really like to diagnose MS,I might want to check with the MS Society. I checked one more Neuro.,and she had to look at everything and decide if she wanted to treat me or not. Needless to say,I hotfooted it back to my original Neuro. I don't care if he's 100 miles away.
At Thanksgiving I had another flare.Now 13 lesions. My balance stinks. I use a four footed cane for better support (have fallen 4 times,injured my shoulder,had surgery) Have tremors,badly,so quit work Jan.1,2012( I'm a hair stylist.Using shears and a straight razor,did not work out to well).Cognitive problems,and bladder issues.But all in all not to bad.Luckily for me,my body keeps the major exacerbations at bay,without using any extensive treatments.
Anyway,it's time to make the effort once again(and hopefully be sucessful for the long haul) And believe me this body is nothing easy to haul around.
I'm shooting for 160.Eventually.
Thanks for listening,and thanks for being here.0 -
Hey Nonni,
Welcome to the group! Your DX story sounds familiar. Basically rule everything else out first
Are you taking any meds for MS at all and have they helped?
Glad to have you aboard!0 -
Thank you Rob.
I take very little medications. Tegretol 3 times a day(TN),amitriptyline,(for insomnia,and burning,tingling pain),and atenolol(tremors,and blood pressure) .Like I say ,I'm very fortunate,
The tegretol is a wonder drug. I'd be in a raging panic,if I found out it wasn't available anymore.I sleep much better. The tremors,it's hard to say if it's helped.
Thanks again for the welcome0 -
Welcome to the group Nonni,
I'm glad you finally have a diagnosis. I would definitely stick with the neurologist who is willing to deal with you and listen because they are really hard to find.
Take care.
Bea0 -
Hi Nonni,
Welcome to the group 0 -
Lately my stress level has increased, as has the amount of gluten in my diet and my physical fitness has decreased. I find that I am tired often and earlier than normal. I too wonder if it is my lifestyle or my illness. When I start to question I remember what my Nurse Practitioner at the Nero says, "What difference does it make? If you're tired, rest. If your not, carry on." I am determined to get off the gluten and back on the bike/treadmill to keep this under control and appreciate all the help/support/guidance of my MFP friends.
I find Stress and Gluten is my killer too! I really try to eat more veggies and fruits and lean protein and I find I do have more energy too. I love my elliptical. I got myself running 4 miles a day before I had my major relapse in 2010. So it is the closest thing I can get to running. I love exercising, it makes you feel so much better. BUT, MS is a killer for fatigue...I take copaxone too but I do it every morning first thing....0
This discussion has been closed.