Really struggling today
 

I was diagnosed with relapsing remitting MS in December 2012. At that time I could walk with a cane. I could grocery shop and play with my son.
In the past three years I have slowly gone to crutches and now I use a four wheel Walker and I have to use fully voice activated software for the computer.
My neurologist now thinks that I'm actually secondary progressive, and that I was diagnosed already in the secondary progressive stage. I have not increased my lesion load at all since my initial diagnosis but my disabilities worsen daily.
My neurologist isn't willing to change my diagnosis because she wants me to still be able to try different medications.

Up until the last six months I have managed to stay optimistic, but lately I really feel like I can't do this. I don't know how much longer I'll be able to stay out of a wheelchair. My insurance won't pay for one because the bought me a mobility scooter. The mobility scooter is too cumbersome for me to use inside our home.

My whole family is in therapy at the moment to deal with what is happening to me. I think it was when I started to lose the use of my hands that I really started to feel what this disease is doing to me. I suffer from horrendous muscle spasms. None of the medication I take seems to really help.

I spend most days wishing this was a terminal disease. Then I would know the suffering would end. The thought that I could live like this, and in a worse condition for 30 years scares the hell out of me.

I used to be a long-distance runner and physical activity was how I coped with everything in my life. My therapist describes it is losing my entire sense of self. And she's right. I don't know who I am anymore. I don't know what defines me except my daily struggle with this disease and that is not who I want to be.

How do you cope? How do you reconcile who you once were with who you are today?

I understand how you feel. I've been feeling much the same.

Does the weather effect you negatively? When the pressure is low and a storm is approaching does your balance get bad?

We've had a couple of weeks of rainy damp and now cold weather and I have been having a terrible time walking and doing just about anything. Whenever I get this way the first thing I check is the weather.

I use a rollator walker (4 wheel kind that you push) and I'd be useless without it. I have no balance anymore. It's just worse right now because of the weather.

Have you asked your Neuro about possibly getting some physical therapy? It might help. I had it for a couple of weeks and it made a small difference. Nothing miraculous but it helped......and I enjoyed the company when the therapist visited! :o

I hope you feel better soon. Wish I had some answers for you but wanted to let you know I feel the same way.

dear kiropi,

your post is so touching. i feel your pain. first let me put my arms (and they're pretty ample) around you to give you a hug. a real hug for a whole minute.

i had several thoughts reading your post. i'm sure i'm not in as much pain as you are but i have been in significant pain for many yrs. when i was in denver i had a reputable neurologist who had a ph.d. in pharmacology but he would never be able to help with my pain. one day i really pushed him to give me an answer and i got the best tip of my life. one i'm anxious to pass along. i went to a local rehab hosp in town and asked if they had a pain dr. they did.

i got my neuro to write me a referral and went to see him. in conjunction with a PT regimen he rx'd me some percoset. it changed my life. the PT helped and so did the meds. then i moved to FL. i would consider trying to see a pain dr because they will really do a good eval and try to help you.

you might also consider a 2nd opinion from another neuro. i think your dr isn't doing enuf to serve your needs. does your dr have ancillary staff in her office like a social worker? have you applied for ssdi? i'm so glad you have a therapist because i know how much that can help.

i was 53 when i was dx'd and tried to work another 2 yrs. i was a NICU RN for 35 yrs and lost my career.

could you possibly sell your scooter and put the $$ towards one better suited to you. you might also consider calling your local MS society at 1-800-FIGHT MS. they could direct you to services that might help.

are you taking an antidepressant? they really helped me along with therapy.
it's ok to feel the way you do. it's ok to grieve for all you've lost. you've got a lot on your plate but it sounds like a lot of loving people around you.

i care so please let me know how you are.

Much Love to You and to Yours
 

Hi KerOpi,

I can feel your pain, on all levels, by reading your post.:(
I am so sorry you are in so much discomfort.

My pain and challenges are not from MS, yet are many and are neurological... and progressive.

I, too, am losing mobility and am not sure of how to handle this.

I want to let you know there a sites on the internet selling standard manual wheelchairs at reasonable prices. Many also offer free shipping for any item over $99.00. I do understand that spending any amount of money may be too much at any point for a family. I just want to be sure you know there are some options.

I see some very nice, clean, used wheelchairs at Habitat's Restore, GoodWill and some of the other similar types of organizations.

I understand that locating a wheelchair is not your biggest issue today. It is on your list, so I thought I'd mention these potential options.

It raises a lot of feelings to have a chronic debilitating illness, to see progression in this illness and to know others in the household are going to therapy in order to also cope with all that's going on. Lots of feelings.

My heart goes out to you and to your family.
May you all feel surrounded by Love.

:grouphug:

DejaVu

Thank you for the tip about the weather. Yesterday actually had been pouring rain all day and had not associated my stiffness with the weather. today is cold but the sun is shining and I'm moving so much better and not nearly as stiff or spastic.

Unfortunately in my area, physical therapist, don't come to you. You have to go to them which poses a whole host of problems with my mobility issues.
I have been through six rounds of physical therapy prior to being diagnosed and since being diagnosed. I do get up every day and do an hour's worth of physical therapy and if I don't do it, I can definitely tell the difference.

Thank you for your comment. Sometimes it's helpful just to hear that someone else's going through what you are.

Thank you very much for your comments and your helpful tips. My arms are too weak to use a manual wheelchair so a motorized wheelchair is the option that I'm looking at now. Like you said it's on my list. Not necessarily what's plaguing today actually more concerned about finding a handicap accessible van at a reasonable price first.

It's always so helpful to hear that somebody else is going through the same pain as you think you for sharing.

I've been trying to reply to each of your replies individually and I'm not quite sure that that's actually working. I'm still kind of unfamiliar with how this forum works, but I have been trying to reply to each of your kind comments.
I'm one month away from my 38th birthday and working backwards with my neurologist. We've determined that I started having episodes at the age of nine. Every doctor I ever saw didn't take me seriously. They saw a healthy person who would recover from these episodes that would last from hours to a day and I would go right back to being full speed and having no lasting effects unfortunately, we now know that that's typical MS in early MS symptoms. I even had an incident of paralysis following my one and only time ever being in a sauna at the age of 16. The paralysis lasted about three hours and my doctor said well you just can't tolerate heat so don't go in saunas or hot tubs.

The county that I live in has exactly 2 neurologist and they are in the same office. I don't have a choice and really the neurologist's office does not have extra help or resources. It's actually very understaffed, overworked, and they serve an entire county of neurological problems. I've seen an MS specialist in San Francisco. He does not think I have secondary progressive, despite what my neurologist thinks, which is part of why she's not inclined to change my status.

I'm working with an acupuncturist/nutritionist and she's actually been the most helpful in my pain management and my muscles are starting to feel like they're actually strengthening. I've been seeing her since August and she said it will probably takes three years before I would notice a huge difference but as long as I'm steadily incrementally improving were on the right track.

I do have a wonderful loving husband and an amazing son who is my life my world. But I have my rough days where I just can't see anything good or positive.

My therapist doesn't think I need antidepressants. She actually is treating me for PTSD. I had a very traumatic childhood and she thinks that plays a huge part of Why I am so depressed and having so much trouble adjusting to my new reality. My father, the parent you actually love me and cared for me taught me not to be a woman who depended on anyone for anything, and I now depend on people for everything I can't even make myself a meal and so I have a lot of anger and self-hatred for the fact that I can't take care of myself and it's very deeply rooted in the way my father raised me.

I forget sometimes how much it helps to just reach out and hear from other people. Thank you very much for sharing with me.

Ah. I disagree with your neurologist on losing your "entire sense of self." It is more a reality of a new normal. You cannot change what is happening, you have to work on how you react to your particular set of challenges.

An antidepressant will help take the edge off your negative emotions. An antidepressant will not make things better, it just dulls the sadness and allows you to function despite the challenges.

I went from playing tennis to a wheelchair full time. It took about ten years to get to my current status. No new lesions, just the nerves doing their last gasp.

My nightly dreams sometimes trigger muscle memory so when I walk or run in my sleep and are amazed that I have movement, I treasure it.

The neurologist is right, do not update your original diagnosis. It will exclude you from trying different medications.

I have those annoying spasms. Do yours come with pain? I also take Baclofen. It did not work much, still does not always calm "the beast." Certain strains of cannabis help a little but most just elevate my mood.

See if your doctor can write a prescription for a wheelchair. It may or may not fly with insurance but try even when you think the answer is no. I have two wheelchairs, one for inside and one for going out. My wheelchair breaks apart into pieces to fit in the hatch of our Prius.

Google "The Spoon Theory" for your family. It is about Lupus but the sx's mirror MS and healthy relatives can relate to the article with more clarity.

I was proactive about this horrible disease. We bought a fancy bed that mimics a hospital bed in that is is motorized and will allow me to sit up if I become bedridden. I got a wheelchair long before it became an absolute necessity. I bought a bidet seat for my toilet. (One of my smart moves!)

And finally, I fake being ok. And I treat myself to an occasional ice cream.

Hi Keropi :D I just love that name. Just a quick note for starters, anti-depressants with MS are so much more than just medicated happiness. They work on pain, muscle spasms and occasional sleep-aid. I suffer from some pretty horrendous muscle spasms myself, they're bad enough to tear ligaments, tendons and break bones... I now Love my Cymbalta. It helps far more for the pain than any of the narcotics I was taking before.

But it's not just the Cymbalta, I'm also taking skelaxin, gabapentin (neurotin), zanaflex and some other muscle relaxant that I don't even remember what the generic is supposed to be subbing for. And according to my neuro, that's the end of the medication line for spasms if they continue to get worse, there's nothing else they can do for me. I'm 35 years old... and like you at times I can't help but think that "with a lot of bad luck" I should be able to live to 70.:o

A little over ten years ago I was training horses, English and Western style. Taking Swedish warmbloods over 6' fences, and weaving around barrels by the skin of my teeth, all while rehabilitating some of the most terribly abused horses, with justifiable trust issues. Now I'm struggling to walk to the end of the driveway to check the mail.

However I don't believe I have lost my entire sense of self. Most of the time I can maintain my sense of humor, that's something this disease hasn't taken from me and if anything has made it even better. But when the disease induced doldrums hit, I try to think of all the things I can still do rather than focusing on the things I can't.

I also try to be thankful for some of the things I can't do anymore like... taking out the trash~ not especially crying over that one... changing the kitty litter box~ close second on thankful I can't do anymore. Unfortunately the hubby bought me a super light vacuum so I can't claim not to be able to vacuum anymore.

As for things that I CAN still do...
I can still fall up stairs :p.
I can sit whenever and wherever (my legs tell me to).
I can still forget to stop and pick up bread and milk on the way home.
I can still keep my side of the bed warm and toasty.
I can still ask my hubby to grab me a drink just as he's sitting down.
I can still be horrified by the "people of Walmart"
Heck I still scream like a two-year old when I see a snake!

So there's lots of things, that are belonging to my sense of self that I can still do. Sure I'm not riding horses nowadays, I'm not hiking mountains, or driving myself around, and too much TV or computer gives me a killer migraine. But there's a multitude of things I can do.

i had a very difficult childhood also. that's when my depression started only i didn't know it.

as an adult i was in cognitive behavior therapy for several yrs which helped but not enuf. only when i started an antidepressant did my mood change and my therapy really work.

don't let your dr discount a med without trying it first. it's not her depression, it's yours. i couldn't see the forest for the trees before. after, it's like a cloud lifted from my life. just consider it. you're your own best advocate. your drs/therapists should still be open to your needs. if something doesn't work, try something else. keep looking for answers. don't give up.

i'm glad to see that so many people are reaching out.