Aa
Help please
Hey everyone. I haven't been on here in a while. I was diagnosed last year in March. Since then, pretty much everything in my life has changed. I bought my first house, met the guy I'm *probably* going to marry, I got accepted to a doctorate program that will require that I quit my job for 2.5 years (and started said program online until I quit later this year) and I hear it's nothing but pure torture to get through the program IF you can get through it, I quit my full time job and started working per diem as a nurse, I gained 40 lbs.... and no, I did NOT need to gain any weight. Needless to say, things have been pretty crazy for me. Stressful, exciting, scary, etc.
My original MS symptoms are pretty much non-existant except for some fatigue. Originally, I was having one leg with parasthesias, one eyed kaleidoscope vision, dizziness, problems forming sentences, etc. I've had daily chronic headaches my whole life pretty much, which has continued. Now, I'm having really sore joints and I just generally feel like sh*t. I've gained so much weight that I assume it's probably caused by that. I keep trying to go for walks and make small changes to my diet so it will stick and I will lose the weight...but when I go on a walk, my back has such an intense cramping/pain sensation that I have to stop every few minutes and stretch, same goes with both of my calves behind my ankles.
I'm having such a hard time figuring out why I feel like I'm walking around in a fog and feel like sh*t all the time. I'm 26 years old. I know that gaining weight puts stress on your body, but I can't help feeling like something is wrong. My shoulders, my back, knees, especially my hips, are aching constantly. For a few weeks about 2 weeks ago, my hips were aching so bad that I could barely lay on them or turn over in bed... and when I got up to walk they would give out on me. That went away, now it's just kind of intermittent aching exacerbated by walking or activity. I was terrified that it was another autoimmune disease (since we're all so lucky to be at increased risk for multiple autoimmune diseases)
My attitude is another thing I can't figure out. I feel like such a drag. I'm constantly worried about my health, yet I feel like I haven't done jack about it. Then when I try to do something about it, I fail miserably. I tried eating paleo for a week... I did alright but still overate everything that I was allowed to eat. I quit doing that and tried to just eat less, which made me eat more. I really think that this weight gain is a result of blaming myself and my unhealthy habits on getting MS. I'm a very emotional eater. I cry at the drop of a dime (unusual for me- until this year)
My boyfriend is getting tired of hearing me whine about feeling crappy. I'm tired of myself for the same. I feel so alone and stuck, like I'm in this hole that I can't get out of. I'm about to start the hardest program I've ever even thought of doing, and going into it 70 lbs overweight and not able to walk without hurting... I just don't know what to do and it feels impossible to fix right now. I'm just so sad and I feel defeated. I don't even know what I'm looking for here. Anyone have any advice? Anyone go through something similar?
OH! and to add insult to injury, I've missed about 2 months of copaxone due to the BULLSH*T insurance I had to get once I quit my full time job. Apparently, United Healthcare forces you to use this crappy company called OptumRx... and it has taken me about 1.5 months to get a prior authorization turned in only for it to be denied because my neurologist's office did not put "relapse-remitting form of multiple sclerosis" and instead just "multiple sclerosis." So, I got another insurance company and will be ditching these guys at the end of february, but unfortunately I'll have to wait until march to even start this prior authorization process over again. And my neurologist isn't covered under my current policy either. So I guess I'll be putting off going to the neuro until march too. Ugh. Sorry for the rambling I think I just needed to vent a little.
My original MS symptoms are pretty much non-existant except for some fatigue. Originally, I was having one leg with parasthesias, one eyed kaleidoscope vision, dizziness, problems forming sentences, etc. I've had daily chronic headaches my whole life pretty much, which has continued. Now, I'm having really sore joints and I just generally feel like sh*t. I've gained so much weight that I assume it's probably caused by that. I keep trying to go for walks and make small changes to my diet so it will stick and I will lose the weight...but when I go on a walk, my back has such an intense cramping/pain sensation that I have to stop every few minutes and stretch, same goes with both of my calves behind my ankles.
I'm having such a hard time figuring out why I feel like I'm walking around in a fog and feel like sh*t all the time. I'm 26 years old. I know that gaining weight puts stress on your body, but I can't help feeling like something is wrong. My shoulders, my back, knees, especially my hips, are aching constantly. For a few weeks about 2 weeks ago, my hips were aching so bad that I could barely lay on them or turn over in bed... and when I got up to walk they would give out on me. That went away, now it's just kind of intermittent aching exacerbated by walking or activity. I was terrified that it was another autoimmune disease (since we're all so lucky to be at increased risk for multiple autoimmune diseases)
My attitude is another thing I can't figure out. I feel like such a drag. I'm constantly worried about my health, yet I feel like I haven't done jack about it. Then when I try to do something about it, I fail miserably. I tried eating paleo for a week... I did alright but still overate everything that I was allowed to eat. I quit doing that and tried to just eat less, which made me eat more. I really think that this weight gain is a result of blaming myself and my unhealthy habits on getting MS. I'm a very emotional eater. I cry at the drop of a dime (unusual for me- until this year)
My boyfriend is getting tired of hearing me whine about feeling crappy. I'm tired of myself for the same. I feel so alone and stuck, like I'm in this hole that I can't get out of. I'm about to start the hardest program I've ever even thought of doing, and going into it 70 lbs overweight and not able to walk without hurting... I just don't know what to do and it feels impossible to fix right now. I'm just so sad and I feel defeated. I don't even know what I'm looking for here. Anyone have any advice? Anyone go through something similar?
OH! and to add insult to injury, I've missed about 2 months of copaxone due to the BULLSH*T insurance I had to get once I quit my full time job. Apparently, United Healthcare forces you to use this crappy company called OptumRx... and it has taken me about 1.5 months to get a prior authorization turned in only for it to be denied because my neurologist's office did not put "relapse-remitting form of multiple sclerosis" and instead just "multiple sclerosis." So, I got another insurance company and will be ditching these guys at the end of february, but unfortunately I'll have to wait until march to even start this prior authorization process over again. And my neurologist isn't covered under my current policy either. So I guess I'll be putting off going to the neuro until march too. Ugh. Sorry for the rambling I think I just needed to vent a little.
Thank you everyone for your responses. It's truly appreciated. So the newest developement is pitting edema to both of my legs. Now I'm pretty worried. I really feel like something is wrong. Going to the doctor tomorrow. Most of this stuff has not gone away despite quitting the chantix.
p.s. still no copaxone, begging for another 3 shots to tide me over for another week :) if anyone has extras laying around........
p.s. still no copaxone, begging for another 3 shots to tide me over for another week :) if anyone has extras laying around........
COMMUNITY LEADER
It's quite possible from your MRI results, that you've been battling a relapse with new issues, on top of your insurance company, quitting smoking, not being happy with your weight etc etc etc.....etc!
HUGS babe, gosh no wonder you've feeling cr@ppy! Take a breath, you've climbed mountains in the last year, you've achieved so much and now it's time for some much needed TLC, be kind to your self......you definitely deserve it!
Hugs........JJ
HUGS babe, gosh no wonder you've feeling cr@ppy! Take a breath, you've climbed mountains in the last year, you've achieved so much and now it's time for some much needed TLC, be kind to your self......you definitely deserve it!
Hugs........JJ
What a coincidence! My mom was just telling me what a hard time she had on chantix. It made her feel Looney toons. She had severe cognitive issues when she was on it. Not to mention just felt plain crummy on it. Could definitely have something to do with how yucky your feeling.
A new lesion could also indicate a relapse.
So sorry for all your going through. Hope your able to get things resolved soon with your meds quickly.
Best regards, barb
A new lesion could also indicate a relapse.
So sorry for all your going through. Hope your able to get things resolved soon with your meds quickly.
Best regards, barb
Hey guys, just an update here. I had a 1 year follow-up MRI last week. Showed more lesions in the brain, and one active lesion in the T-spine. Not sure if this is contributing to the mood swings etc. Several phone calls later, still no Copaxone :( although my doctor did give me 3 samples to tide me over until we can *hopefully* get the prior auth finally (after a month of trying, not getting my hopes up.)
Thank you everyone for all your responses!! I just had an "aha!!" Moment.... It seems like all of these issues started a month ago. I started taking chantix a month ago to quit smoking!!! I looked up the side effects and boom, everything I listed here. I seriously think that drug was causing all of this, including the muscle spasms and weakness.
Regarding the disability status for my DNP program, it's a nurse anesthesia program- so if I'm having cognitive difficulties, then I cannot perform this job. So that's not an option. And I'm just praying that I don't ever start having cognitive issues. Yet another source of anxiety thinking about losing my marbles during school or worse- during a surgery.
Thanks guys :) I am planning on getting a psychiatrist and addressing my weight issues.
Regarding the disability status for my DNP program, it's a nurse anesthesia program- so if I'm having cognitive difficulties, then I cannot perform this job. So that's not an option. And I'm just praying that I don't ever start having cognitive issues. Yet another source of anxiety thinking about losing my marbles during school or worse- during a surgery.
Thanks guys :) I am planning on getting a psychiatrist and addressing my weight issues.
I have been where you are. I was 198 pounds. I was not exercising because I was in such bad shape. I was depressed. I made those around me crazy.
One thing I see is you have made some major changes that is stressful for anyone.
First off stop beating yourself up. That is hard on you and your boy friend. Take thing one step at a time. You might have muscle spasm due to the MS. I have them all over. I take a muscle relaxer. I am used to them and they do not make me tired.
I used to go to the mall when my back was bad and walk to a bench and sit down and go to the next bench. If I just did a couple of benches I was happy with myself.
I very slowly got away from processed food. I have gotten to the place where I do not go into the middle isles of the grocery store. I would try new vegetables. I have found for instance if I buy baby Brussell Sprouts they are not like the ones I had as a child. I fell in love with Kale.I change my diet one thing at a time. Now processed food tastes icky to me. It took awhile.
I got a counselor to talk to and make changes. I also started journaling.
My husband loves me. If I beat up on myself it hurts him.
If you go into a doctorate program I would try to get a disability status I am not what is called. It can't be through the teacher alone it has to be through the University.. It helps you with how much time you have for an assignment for example.Or help with tests.
I did not do this for my Masters and The stress and the MS were really hard. I got really depressed and dropped out. I did not know I had MS but I had cognitive trouble.
Take things in little steps. You know like the joke about how you eat an elephant. One bite at a time.
I have had depression and did not deal well with stress my whole life. Now I am the happiest I ever have been. I am not depressed which makes me get along better with my husband. I do take mood pills. The world will beat us up we do not need to beat up ourselves.
Alex
One thing I see is you have made some major changes that is stressful for anyone.
First off stop beating yourself up. That is hard on you and your boy friend. Take thing one step at a time. You might have muscle spasm due to the MS. I have them all over. I take a muscle relaxer. I am used to them and they do not make me tired.
I used to go to the mall when my back was bad and walk to a bench and sit down and go to the next bench. If I just did a couple of benches I was happy with myself.
I very slowly got away from processed food. I have gotten to the place where I do not go into the middle isles of the grocery store. I would try new vegetables. I have found for instance if I buy baby Brussell Sprouts they are not like the ones I had as a child. I fell in love with Kale.I change my diet one thing at a time. Now processed food tastes icky to me. It took awhile.
I got a counselor to talk to and make changes. I also started journaling.
My husband loves me. If I beat up on myself it hurts him.
If you go into a doctorate program I would try to get a disability status I am not what is called. It can't be through the teacher alone it has to be through the University.. It helps you with how much time you have for an assignment for example.Or help with tests.
I did not do this for my Masters and The stress and the MS were really hard. I got really depressed and dropped out. I did not know I had MS but I had cognitive trouble.
Take things in little steps. You know like the joke about how you eat an elephant. One bite at a time.
I have had depression and did not deal well with stress my whole life. Now I am the happiest I ever have been. I am not depressed which makes me get along better with my husband. I do take mood pills. The world will beat us up we do not need to beat up ourselves.
Alex
COMMUNITY LEADER
I actually don't think i could add to anything that ess has already said.......please get on top of the mental health issues asap though, it's a very common issue for people living with a chronic medical conditions!
Your young with dreams yet to full fill, please don't let your mental health go too long with out seeking help, it'll just make everything that much harder than it needs to be. Start by making a call to your general doctor and go from there....
HUGS..........JJ
Your young with dreams yet to full fill, please don't let your mental health go too long with out seeking help, it'll just make everything that much harder than it needs to be. Start by making a call to your general doctor and go from there....
HUGS..........JJ
Hi there. Feel free to vent away if it helps. I hope it does.
Wow, you have a lot going on. I think you need a complete physical with lots of blood work, to make sure you don't have a vitamin deficiency, thyroid problem, maybe even Lyme disease. You get the idea. Also have ANA, sed rate, etc., checked, since you're right, you could have more than one autoimmune thing going on. As you know, painful joints aren't characteristic of MS, unless as a secondary problem caused by spasticity. You need to clear the decks of other possible issues to be sure what's causing what.
You also could be dealing with depression, which is extremely common in MS. That could account for the dragging feeling, fatigue, overeating, and so on.
If none of these things are happening, then you need to be medicated for your purely MS symptoms. You don't mention whether you're on anything for these, but gabapentin and lyrica do help with pain. Baclofen and zanaflex can relieve spasticity. And there are several meds that help with fatigue. Provigil didn't work for me, nor did amantadine (nothing works for everyone), but adderall does. It also often has the side effect of reducing appetite.
If your neuro can't get his act together enough to get you a prescription for copaxone over 6 weeks or more, he should be given the bum's rush. MS is bad enough without uncaring or incompetent medical help. There are many other fish in the sea, especially in a big metro area.
Perhaps once you start your PhD program you will be able to get better insurance through the university. It's worth looking into, anyway. You'll need all the energy you can muster in the coming years, so give yourself the maximum health advantages possible.
Good luck.
ess
Wow, you have a lot going on. I think you need a complete physical with lots of blood work, to make sure you don't have a vitamin deficiency, thyroid problem, maybe even Lyme disease. You get the idea. Also have ANA, sed rate, etc., checked, since you're right, you could have more than one autoimmune thing going on. As you know, painful joints aren't characteristic of MS, unless as a secondary problem caused by spasticity. You need to clear the decks of other possible issues to be sure what's causing what.
You also could be dealing with depression, which is extremely common in MS. That could account for the dragging feeling, fatigue, overeating, and so on.
If none of these things are happening, then you need to be medicated for your purely MS symptoms. You don't mention whether you're on anything for these, but gabapentin and lyrica do help with pain. Baclofen and zanaflex can relieve spasticity. And there are several meds that help with fatigue. Provigil didn't work for me, nor did amantadine (nothing works for everyone), but adderall does. It also often has the side effect of reducing appetite.
If your neuro can't get his act together enough to get you a prescription for copaxone over 6 weeks or more, he should be given the bum's rush. MS is bad enough without uncaring or incompetent medical help. There are many other fish in the sea, especially in a big metro area.
Perhaps once you start your PhD program you will be able to get better insurance through the university. It's worth looking into, anyway. You'll need all the energy you can muster in the coming years, so give yourself the maximum health advantages possible.
Good luck.
ess
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