I was diagnosed over labor day weekend. They seemed pretty confident of the diagnosis because I have 3 lesions on my brain and also on my optic nerves. Still waiting for results from the lumbar puncture. They gave me a round of steroids in the hospital and told me to go no more than 2 weeks without seeing a neurologist. My original symptoms eased up some but were accompanied by new symptoms. I can't get a neurologist to see me until the end of this month. I woke up yesterday and my previous symptoms came back. I immediately started to cry because I knew what it was this time. I called my PCP and she wanted to admit me back to the hospital but had to consult with a neurologist first. A couple hours later her nurse calls back to tell me that the neurologist said I can not have steroid treatments again so soon. That may very well be true but do I just sit here at home waiting for the symptoms to go away all by themselves? There is no advice, no follow up, and a ton of medical bills already starting to accumulate. I am completely at a loss.
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welcome to MS world!!!!!! we are glad to have you, but sorry why. I moved your thread here as I thought it would fit better. I also think that it will get more attention.
I think what you are feeling is fairly common. You have many things happening all at once, and it is very overwhelming! if your symptoms return, you can always go to the ER. Many have ( I am not a medical professional and I may be wrong) a neurologist on staff.
Whatever happens I wish you the best!hunterd/HuntOP/Dave
volunteer
MS World
hunterd@msworld.org
PPMS DX 2001
"ADAPT AND OVERCOME" - MY COUSIN -
Yeah, to some extent we sit and wait and watch symptoms come and go for a while -- it took five months for my ms neuro appointment. It will become more (weirdly) normal -- for instance, with me, flares last 3-6 weeks. Even though I'm not being treated (I'm still in limbo), now I know, as frustrating and debilitating as it seems each time, it WILL END (at least at this point). Even though I hadn't seen the neuro yet, my family doctor kept him apprised of anything new. Make sure you keep a journal of dates and symptoms. Mine is in a binder now
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I have certain things happen during flares ... and I have stuff that seems to be with me all the time now. It is scary -- in particular because it seems you were diagnosed very quickly.
This is a good place to come for support
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Peace, dear one - all will be ok. Yes, this is a bumpy ride, and not a pleasant one, but you will endure. You will learn to find comfort in small things that are familiar - something you like to do in 'down time' that is quiet and can pass the time. You will learn to recognize and understand the symptoms which, while it does not help them be less obtrusive, does help take away the fear (most of the time).
I've never really had a remission since my last really big attack - April 2012. Just a little worse and a little worse, month by month. I was also dx with fibromyalgia - so now I understand some of the waxing and waning - and it's ok now.
Take time to learn as much as you can. It will help you to understand, and be less fearful.
Know that we are here anytime - so many ears to hear you, eyes to recognize a link, and arms to HUG when you need one - even cyberly.Comment
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sbates,
Sorry about your admission to the MS club. I was dx'd in 1988. There were no medications and there actually were neurologists who told you to "go home and come back when you can't walk"
It's a very scary disease if you don't know anything about it. I have done very well and MS has had little affect on my life. I sometimes say that my life was better after I was dx'd. I learned what was really important in life.
I hope you learn to relax. With all the new med's and all the research being done, there is an excellent chance YOU will be just fine!!
good luck!!Comment
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sbates: I am so sorry you were diagnosed and had to join the club, but happy you found us!
What you are feeling is part of a rebound effect from the steroids. When you are dropped off of high dose steroids, as we all are (some peoples docs prescribe a taper at the end, but not many), you will get a rebound swelling in your central nervous system. That is why you get some symptoms back. This will slowly go away in the next two weeks or so. It takes a bit to recover from the steroids themselves. It is true that you can't have steroids that close together. It has to be a full 30 days in between doses.
I hope that you start to feeling better really soon. We are here for all of your questions and you should chime in on any answers you have for people with their questions. We also have chat rooms that I hope you will check out.
Take care and let us know how it goes with the neurologist.
Lisa
Moderation TeamDisabled RN with MS for 14 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
TysabriComment
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Thank you all for the your comments. All I hear from people around me who say they have ms, know someone with ms, know someone who knows someone with ms, and so on is that their symptoms only last a few days and go months or years without any symptoms at all.
I'm sure they are trying to be encouraging but I am so sick of being compared to everyone else. I have been researching ms since my diagnosis and it says on every medical website that it is an unpredictable disease and no two people are the same. I just don't understand why my symptoms came on so suddenly and I have not been back to my old self for even one day since.
All the positive stories about how people can live a completely normal life with ms...go to work full time, take care of their families, and even run marathons are almost discouraging to me. Everyone can say I'll "get there" but until I "get there" I do not have that positive attitude.
When I was told so many times that it should only last a couple of days I would wake up every morning expecting to be back to myself again. Disappointed everyday.
I do have a job, I do have a child to take care of, a week before my diagnosis I was picking out wedding dresses and getting ready to start back at the gym. I have boy scout meetings and school events to go to with my son. I have a fiance who has to pick up a lot of slack for me.
I know I'm supposed to accept the help and realize people love me and want to help but I have always been independent and active. I feel like a burden to other people. Especially when my vision is so bad I have to have people drive me places.
I fear that if things don't get better, the people I love the most will start to resent me. I am not looking for any kind of sympathy from anyone but sometimes it would be nice to have empathy. I guess I'm in the right place for that.Comment
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I am sorry for what your going through but at least you landed in a place where there are many others that can relate.
I can only share my personal story and hope that maybe you can get some small amount of strength from it.
I have been suffering chronic pain for 4 years now. I have constant nerve pain that is relentlessness. I used to snow ski, water ski, roller blade, hike and ride my mountain bike. because of a back surgery gone bad I have nothing left that was once familiar to me. I have had 5 back surgeries (3 in 3 weeks) and many procedures and this month I am having a spinal cord simulator implanted for pain. I also have nerve damage to my private area so needless to say I have no sex life (luckily I have a wonderful hubby of 22 years) and have a prolapsed rectum which is also less then attractive and literally a pain in the butt. I now have to rely on very strong narcotics which I was always so against and now I can't make it 4 hours without. I know longer ride a pretty pink bike but instead I push a pretty pink walker.
Among my back problem I am also bi-polar and have had many issues for 20 years with this. I have hypothyroidism that caused me to gain 50 + lbs in a matter of 2 months among many other issues. I have had other issues but these are the ones that has caused my life to change extremely.
To top it all off last June I was dx with having ms after only having symptoms for a few months and like you this was a big surprise to me and my family. I was in shock and I'm still dealing with denial. Like you I have read and researched a lot. MS is different for each of us and just like our fingerprints aren't ever the same as anybody else's neither is ms.
I have learned to live a whole new life and I suppose in a way I have been fortunate to have endured something so life changing before I got ms so that I was able to find a way to change my life and change my attitude about life. I found other hobbies like sewing, quilting, painting, ceramics, crocheting and anything else that my new body can endure.
I now have other issues that I am dealing with from my ms and each day I wake up and find one thing to be grateful for. I also have had eye problems from my ms but I am grateful each day to have eye sight and if I do go blind in one eye I know I will see again. There is always so many others that have it worse then me and I thrive on that. I am grateful I have a life living disease and a life killing disease I am grateful to have pain in my foot and leg cause I have a leg and so on.
I think everybody has empathy for you we have all been there and are currently living it each day. I am not saying this disease doesn't stink and doesn't affect me and all those around me but I have it and now for me and for my family I have to be as positive as I can. I am 42 years old and I always thought there was so many things I was going to do and accomplish and unfortunately I won't be doing THOSE things but I will be doing many more.
Lastly, give yourself time and allow yourself to grieve and to accept you dx and be gentle to yourself you deserve compassion, nurturing, understanding and empathy from not only your family and friends but yourself as well.
I hope you are blessed on your ms journey
TiraComment
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I can offer empathy for sure!
One of my memories of the horrific time after diagnosis included me standing on the street waiting for my husband, who was very late, to pick me up because I was unable to drive due to double vision.
I was 40 years old and standing there in public crying like a baby. It was degrading on so many levels.
Hang in there and please keep us updated.
JulesHe is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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How long have your symptoms lasted? Mine have been nowhere near a few days lol ... good thing I didn't actually know anyone with ms to be able to compare ... I had trigeminal neuralgia once, plus two flares of hemiparesis/ cognitive issues\pyramidal signs. PLUS some other stuff as well.
Since January, I've had two relatively good months (June/July) and I'm just heading in again to a better time, hopefully ...
I was supposed to run a 5K in June. Nope. Hoped to try again in September. Nope. Instead, I'm starting at square one on the treadmill ... for the third time this year, fighting disuse atrophy in my right leg. Frustrating? Yup. This time I actually at one point thought, "What's the point?". Then I decided it's far too early for that, since I don't even have a dx.
I'm learning that it's a lot for people to cope with, and we need to be wise about who we confide in. The process is so long and time-consuming. This is a good place to be.
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Hi and welcome andsorry about the troubles.
I have PPMS so no flares, but I know exactly how you feel about comments ending up being discouraging and also having a hard time accepting help.
It is a lot to deal with but this place is great and hope that by being here, you will start to feel a bit better. Are there any local support groups?Comment
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Hi, welcome, and I am so sorry you have to be here but what a wonderful place to be if you are dealing with MS!
You will hear a lot of stories here that are worse, better, or eerily similar to yours. You will get a ton of support, advice, and understanding. You will probably hear others kvetching about people in our lives who know someone who knows someone whose mother's nieces' teacher's dog walker had MS and is as healthy as a horse, or whatever. There are so many weird little experiences that we all share for better or worse!
I was only diagnosed (Dx) 2 years ago so still feel like a Newbie at this MS thing but I do know that you have come to the right place. Not everyone here is perfect and lord knows there seem to be a million different "kinds" of MS in these forums but we all have an understanding of the unique issues we face. Please feel free to "talk" through the questions, problems, and general confusion you may feel- it really helps.
Sending hugs and well wishes your way. Please check back in and let us know how your upcoming appointment goes.
Newbie
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I just want to say that I am so humbled by having complete strangers take the time to offer me advice and support. I should be excited right now. I was on a waiting list to see a neurologist/ms specialist and kind of left hanging by my PCP but after having another flare up so quickly they have worked me in and I actually have an appointment with the neurologist today.
I am more nervous and scared than excited. I absolutely hope for the best but I am so scared of getting more bad news. I have made a list of questions to ask but if anyone has any suggestions on what to ask I would love to hear them. I just want to leave there feeling like I have a better understanding. For example, I just received the report from my MRI, and previously they only mentioned 3 lesions on my brain. I know this is for sure a question for my neuro but can anyone explain?
NUMEROUS FOCI OF FLAIR SIGNAL HYPERINTENSITY ARE DEMONSTRATED IN THE DEEP WHITE MATTER, THE LARGEST IS IN THE LEFT PARIETAL LOBE. THESE ARE ORIENTED PERPENDICULARLY TO THE VENTRICULAR SURFACE. POSTCONTRAST IMAGES SHOW RING-LIKE ENHANCEMENT ASSOCIATED WITH A NUMBER OF THESE LESIONS, AGAIN, THE LARGEST IN THE LEFT PARIETAL LOBE MEASURING 14MM IN SIZE. TWO SMALLER LESIONS ARE IDENTIFIED IN THE LEFT FRONTAL LOBE MEASURING APPROXIMATELY 6-7MM IN SIZE. A LESION IN THE LEFT CENTRUM SEMIOVALE SHOWS AN INCOMPLETE RING OF ENHANCEMENT. THERE IS RESTRICTED DIFFUSION IN THE LARGEST LESION, CORRESPONDING WITH THE REGION OF ENHANCEMENT.
FLAIR SIGNAL HYPERINTENSITIES THROUGHOUT THE DEEP AND PERIVENTRICULAR WHITE MATTER ARE ORIENTED PERPENDICULAR TO THE VENTRICULAR SURFACE. AT LEAST 3 OF THESE LESIONS SHOW RING LIKE ENHANCEMENT. THESE LESIONS DO NOT RESTRICT CENTRALLY. THESE FINDINGS ARE MOST LIKELY RELATED TO A TUMEFACTIVE DEMYELINATING PROCESS. AN INFECTIOUS ETIOLOGY IS CONSIDERED LESS LIKELY, BUT POSSIBLE.
Ok, so does that mean I have more than 3 lesions or that I have more but only 3 are cause for concern? Someone previously asked how long my symptoms have lasted and this has been going on since the last week of August. Some symptoms improve but it seems like they are always followed with new ones. It's a constant guessing game. Sorry for the long post but if anyone can offer some insight I'm all ears. Or eyes I guess I should say....
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **Comment
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RE: sorry you need to be here
But welcome none the less. I am still in limbo but it really depresses me to see the diagnosis of "CNS demyelination" on my official health record. I have several small lesions and 2 larger ones. But the aren't dispersed in different areas, so in limbo I hope to stay.
The suspicion of MS floored me because my symptoms seemed to be explained by other things for a very long time.
What I heard from people was along the lines of what you have been told. Most people have mild symptoms, MS isn't that serious. Seeing people like Montel Williams and Anne Romney is great because some people really have a mild case with few relapses. Then, there is the other side, but the general public seems to be reluctant to see the more severe progressive MS. I think this is partly why MS doesn't get much attention in the media.
That said, at least there are meds that can slow MS down a bit.
Originally posted by sbates View PostCIS DX 2013Comment
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Well the silver lining, if you can call it that, is that by having a MS dx instead of a CIS dx, you are eligible for more efficacious dmds from the get go. So if JVC+, you could opt for Gilenya or if JVC -, you could opt for Tysabri- google rebound disease first though.
The UK MS site has a great link to all the dmds and what to ask yourself and your neuro.
The Rocky Mountain MS Center has great links to complementary therapies.
OMS (overcoming MS) site in Australia by Jelinek is a great resource. He´s a huge fan of meditation and diet.
Take care,
TemagamiComment
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