please tell me i won't be like this forever

[shel67]

I know as far as symptoms go no one can say but will I quit having emotional break downs daily? I know how I'm feeling due to the disease is causing a lot of my breaking down. Will I ever get used to this? Will I ever feel relaxed again and have some kind of life ? House do you get to a place where you can live with this disease?

[shel67]

So what was the EP test for? It was for my eyes and the neurologist said they were okay. What does that mean? I wish I could explain my vision issues.

[HVAC]

You go to a Neuro Opthalmologist if you need a diagnoses. If you are diagnosed with MS you just need a neurologist. If you have just started having optic neuritis or double vision they can give you IV steroids. Or you can just wait it out. Most of the times symptoms go away in six months.

Alex

[shel67]

What can be done for the eyes?

[HVAC]

Neuro Othalmologist

[shel67]

This disease is so insane. I felt okay yesterday, slight improvment, today, I feel worse. One step forward, two steps back.

What is it that an Opthalmologist can do for MS eyes?

[Corriel]

I presented with a visual field loss in both eyes and the poor opthalmologist said I must have had a stroke and that the vision loss was likely permanent.

Thankfully he was wrong on both counts. No stroke just an odd presentation of MS and it got better over a few months and came and went over the course of the next few months.

Because of this issue and a previous issue with one of my corneas (not MS related), my optometrist wants to see me every year instead of every two years. She keeps an eyeon my optic nerve in particular in case I ever develop optic  neuritis.

Corrie

[doublevision1]

I've never been of the understanding that vision symptoms caused by MS are usually permanent, certainly not early in the disease course of RRMS. That doesn't mean that they aren't permanent in some cases, I just don't believe that is the norm. I've also had a bout of optic neuritis, a different issue altogether than the double vision. The former caused by a lesion on the optic nerve, the latter involving the 6th cranial nerve in my case. Anyway, my recovery from ON was unusually rapid. One day my vision got blurry, like looking through glass smeared with Vaseline. I knew it was ON right away. By the middle of the night I was in a great deal of pain. I went to the ER and started IV steroid less than 24 hours after onset. The pain had remitted by the time I'd slept hours and awoken from the morphine I was given. Within a few days my vision was completely back to normal, no residual damage detected on follow up testing. I've heard of others who have lost most of their vision in one eye for weeks to months. I'm sure in some cases the vision loss is permanent. We are all unique in how we experience this disease and unfortunately there are just so many unknowns in regards to prognosis. I believe that being on a DMD is our best bet to reduce subsequent relapses and accumulation of symptoms.

You could inquire about a referral to a neuro-ophthalmologist. They're highly specialized and very knowledgable about MS. In the meantime, try if you can to remain cautiously optimistic. If someone had told me six months in that one day I would see normally again, I would've been thrilled but suspicious. But here I am, eight years later, my vision good aside from normal middle aged far sightedness.

[shel67]

Thanks to all of you... Kyle, no to the steroids. I was told by the doc that at the time of my MRI there was no inflammation occurring and I was not in a active attack.

Alex, what can I say... All that you are going through yourself, for you to comfort me. I want to get to that place where I can stop focus on myself but see that were all in this together. We all need hope and healing, I pray for you, I pray for all people who have this and any disease. This is such an eye opener. I need not be so self absorbed.

I always been such a baby, can't take pain, so for me to find myself in this situation is just crazy. I am grateful that I'm not in pain now. No headaches or anything. My symptoms are more annoying and aggravating but they aren't painful. I can sleep and not have pain to deal with, so I'm thankful. Now facing the reality of a DMD is another situation. Me having to take Aubagio with all these side effects, I really don't think I can. All the shots are out so that leaves me with the PLM drugs. I'm going to have to toughen up or I'm never going to make it.

Andi, your welcome. The shock of knowing the reality that I have this disease is just surreal. I keep thinking I'm going to wake up and this is all going to be a bad dream. I know crying isn't going to change it either.

Doublevision, is it true the eyes  isn't something that is usually permanent? I had a EP for my eyes and the doc said my eyes were okay but man, I can't see. I can see, but am having trouble focusing. I just want to stare it seems like. I can't explain it. All I can say is I have weird eyes. I sent the doctor an email asking for a ophthalmologist referral cuz that right now is the main thing I'm dealing with now. Tomorrow it might be something else. But today I felt some very subtle improvement and it would have been half way decent if it wasn't for the eyes.

Anyway, thanks to all of you... You have made me feel better. And I would love to see if anxiety, anti depressants could help but if I do have to take Aubagio then I don't think I can because of the liver thing.

If it's not one thing, it's another with this disease.

[doublevision1]

Yes, coping with symptoms does make the emotional aspect more challenging. Part of what made my first year the most difficult was my double vision, which was the symptom that accelerated the diagnostic process for me. It was my most distressful symptom. It affected everything I did. I couldn't drive. I walked into walls. I wore an eye patch at times but it was uncomfortable. I was too vain to wear it out of the house, not that I went anywhere other than for medical appointments. I got a stiff neck from turning my head to see one image. I usually watched TV with my eyes closed. Couldn't read much. I looked cockeyed. My left eye turned inward. I was very self conscious.

At first I was told it would remit after steroids. A lot of my other concurrent symptoms did, but my double vision did not. Then I was told it would be better in a month. No change that I could tell. Then told, ok maybe six months. Nope. I was regularly seeing an ophthalmologist who couldn't do anything for it but measure improvement. It WAS improving, at a snail's pace and imperceptible to me. I researched it to death and knew there was nothing surgically or treatment wise that would ever fix it. It would either get better or it wouldn't.

Just as I was coming to terms with the idea that it was part of my life for good, I started noticing that reading was getting easier, I didn't have to bend my neck so far to watch TV, I was getting less headaches, I had few bruises from less bumping into walls, etc. Right around the year mark it had improved enough that I finally felt comfortable enough to drive again. The final outcome was a 90-95% improvement in the alignment of my eyes. I only ever notice it now if I look to the extreme left, or if I'm extremely tired. It has never returned as bad as it was that first year, even with subsequent relapses. My neurologist explained that the improvement was most like due to neuroplasticity. When certain functions are impaired due to MS, the brain can sometimes rewire itself. It's a very slow process. Remyelination may also occur early in the disease, but for whatever reason he thought it was due to neuroplasticity in my case. Perhaps this is more likely to happen with the cranial nerves, I'm not sure.

I do have symptoms from subsequent relapses that have never remitted, the worst being the pain and numbness in my hands and forearms. Originally just my left, now my right hand too. Medication makes it manageable but I haven't had a day of normal feeling hands since 2008. At times it gets frustrating as hell. I certainly complain about it, but I've accepted it's with me for life. No other choice. I'm not holding out hope for a miracle after seven years.


Pre-MS, I never appreciated the emotional toll that a chronic physical illness can have. I had no idea of the impact on one's self-esteem, sense of identity, etc. For me it was profound.

Give yourself time to accept your situation. Emotionally it will get easier. As for the symptoms, time will either bring recovery or adaptation, perhaps as for many of us, a bit of both.

[Andipw3]

All of these comments help me so much. Thank you for asking the question that I was embarrassed to ask shel. My name is Andi ( andrea) , and I was newly diagnosed in March. I still grapple w/ it all and felt I was slow in accepting or " getting over it". It's tough when your inner circle of friends/ family have no idea what the struggles are. Especially psychologically. Of course there's always worse.. But what your feeling still deserves validation.

And thank you again , as always, to such a supportive team that's available here. It's so helpful. Xxxooooo
Andi

[HVAC]

I used to wake up every morning my first year and my first thought was oh that was a bad dream I do not have MS. Then I would go to move my legs and go oh yeah I have MS. No one in my family had MS. I had never dreamed I would ever have MS. I thought I would be diagnosed with something else.

I was like what are you saying I am not even sure what MS is. I had seen a poster in my Neurologist's office for the MS Society. I called and said "I do not know what to say I was just diagnosed with MS". She was really nice and sent me all this literature on MS.

My husband just wanted it to go away. He did not want anyone to know not even his family. This upset me. He did not want to know anything about MS. Now he is totally supportive. He just asked if I had eaten.

I was so depressed when I was diagnosed. I went to my psychiatrist and he helped with medication for depression and anxiety. Then I found a therapist who dealt with chronic diseases.

The first year was not easy. We have a really good chapter of the MS Society where I live. They are good and bad depending on the chapter. I went to support groups and workshops they gave. I did a "Newly Diagnosed" , "Couple's Workshop", "Women with MS", "Every Day Matter's, the happiness advantage", and "free from falls", help with not falling. Some of these are Webinars. I volunteer for the Walk and bike ride. My husband rides.

I have been active on the forum since 2007. These are good people.

You are not alone. Whenever you cry think of me giving you a hug.

Alex

[kwarendorf]

As others have counseled, time will help you adjust emotionally to your new normal. About your symptoms, most of us were diagnosed during or just after a relapse. Many of us were treated with high dose IV steroids to fight the inflammation that caused the relapse.

You are new to this and may be on the tail end of a relapse. Did you get steroids?

Kyle

[shel67]

thanks... yeah I cry every time I mention it. My thing I'm struggling with the most are these symptoms. If I would have found out last year when I didn't have these symptoms I have now I'd take it better. Accepting the symptoms is what's causing the distress. Trying to wrap my mind around the fact they may never go away. That's what causes me to worry about the future.

Alex, you are such a beautiful person even though I don't know you. You give me encouragement and to realize there's a bigger picture here. Thank you.

[doublevision1]

Somewhat like moving on after the death of a loved one, the thing that helped me was simply time. I was very emotional too. Couldn't even discuss my diagnosis without crying for probably the first four months. It took a full year before I really accepted it. It just gets easier with time. The label of MS seems strange and foreign and impossible and absurd. It sinks in slowly, and eventually it somehow just gets easier to bear.

[HVAC]

First off you have to go through a grieving process which ends in accepting the MS. This can take awhile. The key to living with MS is adaptability. Being able to change and adjust to new symptoms. It is living one day at a time. None of this is easy.

I used to be a very depressed person. I had a rotten childhood and just when the last of my family died my Primary care found my MS. There was two years of being diagnosed. When I was diagnosed I thought I was a burden on my husband. I was very depressed.

I personally got into mindfulness meditation. Learning to breath and stay in the moment. I lost a lot of moments thinking about the past and the future. Now living in the moment really helps. Most bad things happened in the past or may happen in the future. Nothing really bad is happening at this moment for me.

I worried about going blind or being in a wheel chair with MS. I thought I would get every symptom. It turns out since I was diagnosed in 2009 I have not even had to see the doctor much for my MS. I have my issues but not as badly as I thought.  

Then 2010 I started to get really sick. I went to a lot of doctors until 2012 when I was diagnosed with late stage Ovarian Cancer. I have the BRCA gene which causes ovarian cancer and gives me a 90% of breast cancer. I almost died the first year. I was really angry about the cancer. It has now been three years. I am the happiest I have ever been. I do not know how much time I have on the planet. I try to make the best of every day I have.

I have realized people are not statistics. My cancer has a high mortality rate. I might end up with advanced MS. I might die of Ovarian Cancer. I might die of triple negative breast cancer. Or none of these things may happen. Today none of the bad stuff is happening.

How I get through MS is to accept I have MS and that is is what it is no worse and no better. I have a husband who loves me, I have good friends and I am doing better than I thought I would be doing at this time. I adapt to my changing circumstances.

MS *****. It is not fair. You do not deserve it. The only thing you can control is how you feel and your actions. When I was diagnosed with MS I improved my diet and exercises because that is something I can do. I eat well, lift weights, stretch, swim, and walk my dogs. I am a lot slower and I walk funny. When I do projects I have to take a lot of breaks. I can't find words. With chemo all the time I get more fatigued.

I try to help others.  It gets me out of my head. Today I sat with a young man who lost his wife last year, his house a couple of months ago, and now he is dying of cancer. He asked me to be with him even though he slept most of the time. It was a privledge to me that I could give him a couple of hours. He will only be on the planet a few more days. He thanked me for being with him. I told him all the good things I see in him.

Alex

[shel67]

Thank you both. There are other reasons for my anxiety that this diagnosis brings. Like my kids and what's going to happen to them even if I get a little  worse. My autistic son is a major concern. I'm going for counseling next week and I need it badly.

Today I woke up feeling like I worsened and then after I broke down again I felt maybe some improvement. I know enough now to know the ever so slight feeling of improvement means tomorrow I could feel a set back.

I had a long talk with the Aubagio nurse. He was a man and he was helpful. I still don't know how I feel about this med. It has a lot of baggage. So that adds to the anxiety. I'm worried about taking any other meds being on Aubagio.

So I need to stop stressing. I fear of going to make me worse our cause another attack and I'm not getting over attacks for some reason.

It's only been a few months. So I'm holding out hope that some of stuff will lighten up.

I just don't know how I can go from A to Z over night

[Corriel]

They say a major diagnosis like MS triggers the grieving process and I can personally say that was the case for me.

There are many stages that could and likely will hit you like denial, anger, bargaining and acceptance, among others.

Like with MS the stages of grief vary from person to person and with your anxiety those feelings will be amplified. Try to take step back and look at things through a different lens.

You are now armed with a diagnosis, preparing to start a DMD and it sounds like you have a good neurologist who is taking your illness seriously. This is an excellent start.

MS is not a life sentence and once you accept that there will be days you feel great and others that you won't, your anxiety level will decrease.

There are a lot of emotions the first year after a diagnosis but you should never let it make you a victim. You can feel sorry for yourself occasionally because you are human after all, but you need to channel your inner warrior. There are many more horrible illnesses that you could have and once you let go of your fear you may realize you are absolutely strong enough to pull yourself through this.

Life goes around us despite illness. Some days I get so frustrated with my list of ever growing symptoms that I could just sit and cry. I choose not to because it isn't going to change anything. Some days I remember how fortunate I am despite my MS. Life goes on.

Sorry to ramble but if you are concerned that your anxiety is taking over then you need to acknowledge the feelings that are making it happen and do your level best to shake them off.

You have the strength to drag yourself out of this cycle. Believe that and believe in yourself.

Many gentle hugs,

Corrie

[jensequitur]

MS can tear you up emotionally - partly because it's a disease. Partly because it can really mess with your mind. Emotional lability, depression, obsessive-compulsive disorder, Tourettes... After all, it's doing damage to your brain. That's not casual.

I can tell you that it will pass. I don't think I've ever gotten to a place where I can live with this disease, but I'm a lot better off than I was in 2009. It takes time to heal.