questions and how do people deal with this?

[Daisycat]

I have a couple of questions for the people here.

1. Can B12 deficiency cause csf oligoclonal bands to show up? I have found a few places that say yes but I don't know if it is true. I know it can cause brain lesions so I was wondering about the bands. The doctors refused to test me for this when they first told me how my life has been cursed so I did my own research and want to see if it is worth it to ask for a second spinal tap if my MRI comes back normal.

2. If I am getting my hopes up for nothing (but hey I haven't had hope in almost year so at least I might get to feel hopeful one more time....) how does everyone live knowing that their life is basically over?

3. I love my boyfriend and I thought we were going to be together for life, but I do not feel like it is fair for him to be my caretaker when the day comes when I am a paralyzed cripple. Would it be better for me to just break up with him now so he can still find a normal woman to have a life with? I love him and I know he deserves more than a life with me will give him.


Right now my method is coming home from work and taking some medicine so I can sleep. I honestly do not see the point in ANYTHING if I am cursed for life. I basically have no one to talk to about this because it is humiliating to me to admit that my brain is basically rotting out of my head
I just find this entire situation unfair. I had so many plans for my future and now I am basically just waiting around to become disabled. I can’t even decide if I should work hard to pay off my student loans or just wait until I am on disability since if I am unable to work because of a disability I don’t have to pay them.

Thanks to anyone who read and responds to my rambling. I never knew how completely alone someone can feel in life and knowing no matter what I do this is how I will always feel makes me even more depressed.

[ppmsichshize]

New Diagnose??

Daisycat,

Your life isnt over....your brain is NOT rotting outta your head...are you recently diagnosed with MS?

ans (1 Probably not true on the b12 deficiency thesis, however your the patient, if thats what you want the dr to look at, then find a second opinion from a neuro that will listen to you and cooperate with you.

ans (2 If you are an ms patient, you will hear and read about many drugs, diets, medical findings that will get your hopes up...beware though theres a lot of crap floating around out there, you'll learn to pick and choose wisely as to what may or may not work for you.

ans(3 A test in life has been thrown upon you and your bf, time will tell, if your love for each other is genuine, then this is only a small hurdle in life. (it's neurological problems, not stage 4 cancer).

You sound young...what are your symptoms?
Still able to walk?
cognitive issues?
RRMS or PPMS ? You may have many years before you become disabled, I hope thats the case for you, your not alone, there are a lot of very good people on this site with a lot of knowledge, you will soon become connected with them. It is good to share experiences and life stories amongst the group.

As you have already noticed, this is a good place to rant, vent use as a sounding board or whatever is on your mind.

hang in there and keep on keeping on!!!!
Your life will move forward no matter what. And there is still a tremendous amount of beauty in life for you to enjoy

God Bless

Rob

[Daisycat]

I was diagnosed about a year ago and have not really cared about anything since. Every day I pretty much just go through the motions of what a normal person should be doing and count down the seconds until I can go home and sleep.

I know the B 12 thing is probably a reach but even if there is only a 0.00001% chance I will still take it.

As for my boyfriend I have given him an “out” twice. I told him if he wanted to leave to please do it now while I was still able to work and take care of myself and he said he wasn’t going to leave me because of this. However , I think he deserves a future with someone he can grow old with and travel with and have a life with. He doesn’t deserve someone who is going to end up needing him as a caretaker.

I am not sure if you would consider me young or old. I am in my mid 30s and the only symptom I had ever was double vision. MRI showed lots of lesions and spinal tap was positive for bands. I don’t know if I have any other issues because now if my thumb hurts I try to find a way to see if it is caused by MS.

My neurologist has told me I have RRMS but really not much else. My visits are probably about 10 minutes long. I feel that I have learned more about this disease from the internet. (which I know is NOT a good thing). I also know I can have many years before I become disabled but thinking about how I will one day probably become disabled makes me cry. I am furious with “normal” people when they complain about stupid problems. I want to scream at them to shut up and that I do not care.

[pennstater]

When diagnosed, you may feel your life is over. But it is not. With time, you adjust and go about living life to the fullest you can.

I recommend seeing a psychiatrist and therapist to help you adjust to the diagnosis. Your neuro may have a recommendation for someone who deals with chronic illness. This seems really important since you said you don't have anyone to talk to. It is also not uncommon for people to encounter situational depression on diagnosis. Or MS itself can lead to depression. Either way, you need to treat it. You may not need meds, just therapy. But only the doc can evaluate. You need to be able to talk to someone.

As for disability, not everyone becomes disabled. If you get on a medication that has a high efficacy rate to prevent flares and you respond to it, then you won't be accumulating damage from flares. The theory is that less flare damage, less disability.

As for your boyfriend, if it is true, then it will last. Don't make decisions for him based on "what if" scenarios. If he were in an accident and needed chronic care, would you walk away? Or would you want him to make that decision for you?

There are lots of people on this board who have had marriages and kids, now grandkids. Full lives. At my infusion center, there are many younger people diagnosed recently to 10 years ago that are active, with kids, working, going about normal life. Most have not had another flare while on Tysabri and their MRIs show no progression.

There are no guarantees in life, with or without MS. Don't give up on it based on a new diagnosis. It is overwhelming and for some people it can be progressive from the get go, but time tells this. For most with MS, progressive is not the norm.

The way you feel now is not how you will always feel. But you need to reach out and get help.

[Daisycat]

I was diagnosed about a year ago and have not really cared about anything since. Every day I pretty much just go through the motions of what a normal person should be doing and count down the seconds until I can go home and sleep.

I know the B 12 thing is probably a reach but even if there is only a 0.00001% chance I will still take it.

As for my boyfriend I have given him an “out” twice. I told him if he wanted to leave to please do it now while I was still able to work and take care of myself and he said he wasn’t going to leave me because of this. However , I think he deserves a future with someone he can grow old with and travel with and have a life with. He doesn’t deserve someone who is going to end up needing him as a caretaker.

I am not sure if you would consider me young or old. I am in my mid 30s and the only symptom I had ever was double vision. MRI showed lots of lesions and spinal tap was positive for bands. I don’t know if I have any other issues because now if my thumb hurts I try to find a way to see if it is caused by MS.

My neurologist has told me I have RRMS but really not much else. My visits are probably about 10 minutes long. I feel that I have learned more about this disease from the internet. (which I know is NOT a good thing). I also know I can have many years before I become disabled but thinking about how I will one day probably become disabled makes me cry. I am furious with “normal” people when they complain about stupid problems. I want to scream at them to shut up and that I do not care.


Sorry if this posts twice my internet is being weird....

[Ant1981]

There still is a point to life

Wow, I read your post and it was terribly depressing. I’ve been newly dx last year and been hopeful the whole time. I have been dx with RRMS and was in a wheelchair, now I’ve changed my lifestyle with diet, meditation and excersize. I can still do everything that I used to albeit with minimal deficits, I’m being treated with tecfidera and my neuro says it’s likely working. I’ve been relapse free for 10 months now and feeling hopeful and positive about my life with MS.

I broke up with my girlfriend of 6 years last winter (not cause of my dx) just the wrong girl for me. I’m starting a new relationship and disclosed my condition early and still going on our first hike this weekend on a mountain getaway. I don’t know why you say your waiting? Waiting for what? To be disabled? No one knows the course your MS will take, there’s reason to believe you will be paralyzed or something, severe disability/paralyzation is not %100.

Nows we the time to live life and really enjoy it, every moment.

Dont give in to this disease, I don’t know wat your dx but can only give you my take on it. I was scared upon dx and in really rough shape but recovered to about %98 luckily, got me back 2 school, ended a toxic relationship and met a new girl. I’ve got lots to look fwd to still and enjoy my life very much again.

keep your head up, you don’t know how your MS will affect you, stay in the moment and don’t worry. Medical research is constant and the current treatments available are out that can even slow down this MS and you can live a perfectly normal life.

stay strong 💪

[Ant1981]

Age

BTW, I’m 37 y/o male, dx sept. 2017.

went from wheelchair, walker, cane, extensive PT. then ran on treadmill for 60 mins. Straight and did a 8 hour hike on Canada day (July 1) A new life is just beginning. It’s gonna be OK 🙂

[Daisycat]

I do not see how someone can be diagnosed with this and NOT be depressed. I have tried anti depressants and have had bad reactions to everyone I have tried. I have anti anxiety medication that helps somewhat but not enough on most days.

And I know not everyone becomes disabled but I am terrified every second of every single day that I am going to be paralyzed or become blind. I do not want to live like that. I am on Copaxone. I honestly am not sure how high its efficacy rate is because anytime I start to read about it my bad habit of dr googling comes in and I find myself spending 3 hours reading about the side effects of ms and how many people become disabled. I have a bad habit of reading my MRI report over and over again and googling what the lesion locations mean and what my projected outcome is based on that alone.


And no I would not leave my boyfriend if he was in an accident and needed chronic care. I also wouldn’t want him making that choice for me. I am just having a hard time because I feel like I am cheating him out of a future where he will be happy. (this is a10-20 years down the road future)

And I hope you are right that I will not always feel this way because everyday I have less and less desire to do anything but sleep.

[Seasha]

Hi Daisycat and welcome!

You have gotten some good advice here and I just want to add that I think most of us have been in your shoes in regards to feeling depressed and unsure of what the future holds. I also recommend seeking a therapist to help listen to your fears. Maybe an anti anxiety med might help you? I did for me and many others here.

I would also recommend finding an MS Specialist who will listen and spend more time than 10 minutes with you. I went through 4 neurologist before I found one. Has any MS medication treatments been recommended for you? Getting on a treatment plan is crucial at this point and now there are so many newer and more effective meds than ever before.

Thank you for sharing and know that MSWorld is a safe and welcoming place to vent and ask questions. We all do it. Try to keep the stress level at bay, as stress can wreck havoc on you. I know it's a difficult time and I'm sorry to hear. Please take care

[Daisycat]

BTW, I’m 37 y/o male, dx sept. 2017.

went from wheelchair, walker, cane, extensive PT. then ran on treadmill for 60 mins. Straight and did a 8 hour hike on Canada day (July 1) A new life is just beginning. It’s gonna be OK 🙂

I don't think I have ever in my life been able to run for 60 minutes or hike for 8 hours. That is very impressive.

[Daisycat]

I am on Kloplin for anxiety. I have some OTC things I use on occasion as well but I don’t really like mixing a bunch of meds together. It is mostly to try to help slow down the tolerance to the Kloplin. It does help some. – Like without it I am a 16 on an anxiety scale of 1-10 and with it I am maybe an 8. So it does help me at least function and get through my day.

I am also on Copaxone 3x a week. I HATE injecting myself , but out of all of the different options this one seemed the best. The ones that require any type of trip to a hospital are out. Hospitals give me such bad anxiety now that I can’t even drive myself to see my neurologist. I have to have my boyfriend take me.



I have an appointment with my neurologist this month and if it’s another 10 minute visit I am going to have my PCP help me find another one. My PCP has already asked if I wanted him to call in a referral for me to a different neurologist. So on my next day off I plan to try to look around to see if I can find somewhere that has reviews about doctors.

[Ant1981]

Thank

I don't think I have ever in my life been able to run for 60 minutes or hike for 8 hours. That is very impressive.

just had to prove to myself that I can still do these things, I do heavy weight training as well, my neurologist spends 45 mins with me talking, 10 mins is kinda short.

I take zoloft for anxiety and it does wonders, I was consumed with anxiety too over the winter and feared being in a wheelchair but that’s not the case... I’m fully active and have loads of energy. Just LIVE IN THE NOW.

[SNOOPY]

Hi Daisycat, I haven't seen you on MSWorld for quite some time. It's nice to "see" you again.

I am basically just waiting around to become disabled.

Please don't do that, there is so much that you are intentionally missing out on. Time doesn't stand still and life can move on without you which down the road might lead you to regret not living your life. I would really hate to see that happen for you.

Have you considered working with a Psychotherapist? They are there to help you work through your thought process and help with new coping skills. Your BF could go with you to your sessions, it might be helpful for the both of you. Negative thinking, fear, and uncertainly can leave you in a vicious cycle and is not healthy.

I don't know if you have ever read my story but here it is:

I met my husband when I was 18 years old, we married when I was 20 and I was diagnosed at 24 years old (I have symptoms that go back to childhood).

3. I love my boyfriend and I thought we were going to be together for life, but I do not feel like it is fair for him to be my caretaker when the day comes when I am a paralyzed cripple. Would it be better for me to just break up with him now so he can still find a normal woman to have a life with? I love him and I know he deserves more than a life with me will give him.

I was in pretty bad shape at the time I was diagnosed, both physically and mentally. I told my husband I would understand if he wanted out of the marriage and would not think less of him if he walked away. He became angry and said he has no intention of leaving. Why? He loves me, disease and all. I would guess your BF feels the same way. That's a great guy you've got there

We are still married (37 years) and went on to have 2 children who are now 26 and 28 years old.

After 33 years of diagnosis -- I am disable but ironically it's NOT due to MS. It's a frustrating position I find myself in but there is not a single thing I can do. My MS has been stable for quite a few years, no relapses and no progression.

[Daisycat]

I am regretting missing out on life but to be 100% honest I feel like there is something wrong with me and I don’t deserve anything in life because of this thing.
I’m miserable and I know I’m not fun to be around. My anxiety meds and otc stuff is the only thing keeping me sane. I keep trying to find the perfect “mix” but haven’t perfected it yet.
I also have considered therapy but I have a hard time believing they actually care about me and aren’t just there for money and if my insurance doesn’t cover it I’m out of luck.


The messed up thing is the days I feel “happy” I feel guilty and disgusted with myself. I don’t feel like I deserve anything good in life because of this.



I’m glad you have a good guy who stayed by your side. Those are hard to find sometimes

[Jules A]

Hey there,
FWIW I work with a ton of therapists and while many of them suck they are all kind and caring. I don't know anyone stupid enough to spend the years in school to get a masters degree to make the modest salary they make without having a passion to help people. If all you are on is Klonopin you need a psychiatrist. I get that you think it is the only medication that will work for you but that is unlikely and benzodiazepines are generally not a great choice for long term treatment.

I totally understand feeling bitter and overwhelmed about a crap diagnosis like MS. I'm not one of the Susie Sunshines who seem to find a silver lining in everything but I also have planned to keep it moving forward for as long as I am able. So far that has been 13 years.

Although not a day goes by that MS doesn't linger in my thoughts causing fear and uncertainty about my future I have been blessed to be able to work more hours than most non-MSers can or will. I have saved money for what I believe will be my inevitable decline regardless of if it comes from MS, cancer, dementia or whatever else old people's bodies are riddled with before giving out. I have just recently, in my mid 50s started spending some time and money on experiences and modest travel. Again regardless of whether its MS or something else at my age I'd be a fool not to consider these are the best years of the rest of my life from a physical standpoint so I better now squander them. I guess the good news is I really have no interest in living an excessively long life. I'm hoping for 75 or 80.

I hope you are open to considering trying to live your life while you still have it.