I Feel Like I Am Losing My Mind With This Ms Crap!

Ugh, I think I am having yet another attack. I feel so alone and scared now. I am so tired of this condition and so angry. Just as I was getting back my energy and feeling great, just as I started to get back into daily yoga and moving things in my life, it is coming back. I am scared of it again! I am usually so positive and patient but this morning it was pure hysteria and I felt like hitting walls and slaming doors. And no one cares enough to show some support.
My toes started to get numb last night during my yoga workout. By the end of the night my feet lost sensation and I got spasticity. It is now progressed all the way up to my thighs. I hate the thought of solumedrol IVs, hospitals, all of that crap that comes with it. And I feel so helpless and alone. Sorry for the rant, I am just very angry now. :(
31-35, F
13 Responses Jan 12, 2013

It has been over a year since you wrote this, but I literally googled I feel like I am losing my mind, think its MS, and found your post. I feel so alone, and scared struggling through testing and waiting, haven't even gotten to the specialist/Neurologist yet. Insurance changed, lost my appt, can't work, just lost my pancreas to autoimmune disease last year. Feel like everything is connected, docs discovered I had no Thyroid gland when I was 10-11 mo. old/baby. Guessed it was autoimmune, Lived a pretty normal life, said I was a miracle. Since I had my last child who is now 3, my health has severely declined. I have 4 children, girl 3, boy just turned 4, girl just turned 10, and a 16 year old son that belongs to my Man. Nobody has a clue how hard I fight everyday, want to be strong... so relate to your comment about just when you think your doing better and are doing positive things... here it comes again! I don't know if you will get alerted to this post or not, but I pray you do... we're around the same age, and I would love to shoot the **** with you, and try and laugh about all these crazy things. Oh by the way, my New Years Resolution this year was to take up cussing... =)love your username. BSMS! pleeeeeeeeeeeeeeeeeease respond! or find me on Facebook, Blaire Black, my pic is a black and white selfie. Wishing you all the best.

I replied to you, check your inbox.

Hey Sweetie, I want to help. I am late to a belated XMas party. I'll ping you back tomorrow. Stay well!

Thank you! Enjoy the party

I'm back - party was big fun.
I didn't notice your note "I feel like I'm..." was last January. Are you feeling better?
Background: I was Dxed Jan. 2001and while I know all too well that I have MS every day, I have been very lucky. I have been on Tsyabri for about 3 years total. I came off of it after 23 months and went on Gylenia for about a year then returned to Tsyabri. I have done great on it. There are potential risks with staying on Tsyabri for too long. If interested, I will be happy to discuss but it may not be an issue for you. Fatigue is a huge issue for me. I take Provigil to help with this and am so thankful for this drug! I'd love to pick your brain on Yoga! I used to run but...so Yoga interest me a great deal. I went to one class and it was the stuff sitcoms are made of!
So enough about me. How can I help you? All questions are welcome. I hope I can help. Jim

Hey Jim-
Thanks for your support. I am rarely on this site, so sorry for delayed response. I am feeling better. Although every day is different. There is no 'I usually feel this way'. How do you like Provigil? I used to work in marketing this drug. I have a couple of pills myself, but never took them. How is Gylenia working for you?

Happy Friday! Sorry for the tardy response - I gave up this site for Lent (no really!) and haven't got back into the routine of popping on occasionally.
So happy to hear you are feeling better! Provigil is a huge help! I have been gluten & dairy free for several months. This is helping a great deal! Thus have been able to cut back my provigil dose. I encourage you to talk to your doc - give it a shot.
I"m not taking Gylenia. I am 2 months into taking Tecfidera. Stay in touch - stay well!

1 More Response

Glad to see the! ! In your posts. It's always a good sign!

How are you feeling today?

So so, its a bit hard today; thanks for asking

Thinking positive thoughts toward you, Aghcheeg-Jahn.

Thank you! Thats very sweet

i can understand what you are going through, my journey was short but pretty tough so far, one night i had a killing bad ' weird ' headache and the next day i started feeling tingling on the right side of my body, losing my balance, my eye got weird so my mom picked me up from school and went to the hospital and had immediately an mri-scan (as my uncle has ms), 7 leisures, 3 days of solumedrol, i felt better so went home. 3 days later again a relaps, back to the hospital again. after 5 days of solumedrol i felt a bit better but they wanted me on plasma exchange. after 3 sessions i got a relaps again, back to the hospital again, 2 days solumedrol, 2 days plasma exchange, felt again a bit better. few days later again a relaps, back to the hospital. my neuro was also getting crazy she said let's wait for a week to see if you get a bit better. and let's have another mri almoste nothing changed, 12 leisures on my new mri all 2 cm + but yet, again a relaps. it was just that it coudn't get any worse i couldn't even sit anymore, so went again back to the hospital. 5 da.ys imunoglobuline, felt better, started walking etc+ few days later, of course, another relapse. i thought i was going to die, i couldn't take it anymore. my neuro wanted to put me on tysabri but i am JC+ positive so i started avonex. 3 weeks have passed, i started walking again, i can speak, swallow go to the bathroom again, my eye got normal and i'm getting better and better :) never give up!

How are you doing now?

My Neuro said there were a few new drugs in the pipeline. I don't know as to its effect on the liver, but hopefully there's gonna be one that you will be able to take. Hold tight- springs coming. Keep up with the yoga if you can.

I gotta get back into it :) Last time my attack side tracked me. I am excited about spring! My favorite time of the year. Thanks for your support!

Thanks a lot for your support. Yes it is a miserable disease. I hold a lot in, I really today. Some days are good - most really are, but today is not one of those days, unfortunately. Today, I was told that Copaxone is apparently not working for me and that I have to think of switching to other therapies, which are stronger. And that MS is progressing and attacking me more and more - well according to MRIs. Unfortunately, that was the only med that I could take. The other ones, including Tysabri and the new Gileniya affect the liver. I had liver issues for some time and I really don't want to be on chemo (Tysabri) or new product (Gileniya) regardless of liver issues. Forget about interferons. I can't take them. So, I am completely crushed. I had a suspicion that it wasn't doing much for me. And I have very good intuition, so I felt that starting this therapy (Copaxone) in Jan of 2012 won't do much for me anyway, that is why I delayed starting it for so long.

Yes, I learned to gain strength from it and I am surprisingly strong on many occasions and mostly optimistic. People who see and interact with me would never suspect I deal with so much crap. Anyway, today I have no clue what to do. This stupid MS is not leaving me alone. Why? And yes, I refuse to accept it. Because acceptance to me, means letting it in. I am not accepting that I will be living in misery - no thanks and I am not accepting that it is ok to suffer from it. And not accepting many things doctors tell me and in many ways it kept me sane.

Thanks for all your support!

You go girl!!!

Never give up and never accept that MS will win out. Best way to deal with MS, as another sufferer said is sheer bloody mindedness.

My specialist 25 years ago basically told me my life was over. He told me i had to take one week of in 4, no doing this and no doing that. I was just married with a young baby a new house and self employed, no way was that a possibility.
Today i have three great kids, still married to the same women that has given me the support i needed and still need today.
I still run my business and reasonably successfully.

I still get relapses, my legs don't work to well and i am cross eyed because a couple of muscles stopped working and i get serious fatigue.

But all in all life has been pretty good..

Thank you! You have a great spirit!

Hey don't let it own you! I know that sounds hard and it was for me a few times. I was diagnosed when I was 17 I'm 48 now have had highs and lows used to think to my self that at least god gave it to me cause he knew I could handle it better then someone else. No matter what it does to try to slow you down fight it tooth an nail. You probably have heard countless people give you advice because they heard that if you hang chickens around your front door and dance naked covered in mud on the second full moon of the year, from a friend of a friend just smile and wave. I have seen M.S. take people down the road to misery
I have had to adjust my life to live and control it. 3 career changes all something I loved doing helps if you love what you do. I even put it in my resume I tell them I have it I control it and it gives me more of a challenge to be the best I can be. Last boss said he stopped there and picked me for the position in the company. My first year proved my statement I had out sold people with 20 years of experience. I have seen the world through my work raised 5 awesome kids lost every thing once now my new stuff is nicer who knew. Now if I didn't get M.S. Would have worked on family farm never got to see what I have seen experienced what I have. Sure made it harder to do things but I learn to gain strength when it causes weakness.

Hey, for whatever it's worth, I know how you feel. I am newly diagnosed with this (Halloween last year) but no stranger to the disease. My mom has had this for 22 years. I've been told the absolutely rarity of a mother and son possessing the same disease and that it probably has a lot to do with where we're from, upstate NY. Regardless, I try my best to stay positive all the time. Your attitude is always the key to life whether you have something or not. I was so angry in the beginning, which turned into a complete loss of motivation and interest in just about anything but sleeping. I'm proud to say I'm finally snapping out of it and coming around again. If you ever want to talk, I'm here and like to share stories and learn new perspectives. I start a treatment regiment this weekend (rebiff) but my awesome dr has approved me for a trial which offers a years worth of gelanya, no insurance required, maybe even 2 years. I just want this numbness to leave the insides of my upper legs. It's so obnoxious. And what feels like a charliehorse above my right knee that has been there since August, non-stop. Which is why I had the MRI in the first place. It can be unbearable and I just hope I wake up one day and it's gone. I would like to share ideas with you or anyone else new to this or veterans because I think that is helpful to have people in your corner who actually understand. I'm young, yet I feel as though this has stolen a part of my youth...

Yeah, I know it is so obnoxious this condition. One day I am running around feeling great, next day I can't walk. And even when nothing really bothering me, I get non stop fatigue, out of nowhere. Its like anything and everything can be affected by this disease! Thanks for your support. Please share your stories here too.

It's been a 5 month long battle of numb knees, some kind of an inflammation underneath the balls of both my feet, which makes walking barefoot on anything but carpet a little hard, and an almost constant charliehorse type of feeling above my right knee. Altogether, it's just an obnoxious feeling. But I'm over being mad about it. I used to get cluster headaches too. Those lasted about 6 months. Before that, there was an issue in my neck which would cause a tingly feeling in my lower abdomen if I ever bent my head down. Years before that, the very tip of my left pinkie was numb for almost an entire year. That was in 09, but who cares, right? It's just a pinkie. It's not that important. And I was golfing a lot at the time so I blamed my tight grip on the golf club. The abdomen issue I blamed on riding a rollercoaster. The headaches I blamed on dental surgery because my mouth had been propped open for so long. The current leg issues, I had no scapegoat for it and was already convinced it was MS anyway due to my family history. It's a pain but what can you do, ya know? Just follow the doctor's orders, stay upbeat and definitely stay social. Don't withdraw. I did that for a few months and felt so much worse. Even if you are social on just the internet, having a connection to other people really helps a lot.

Just finished a three day solumedrol drip, so I can relate to your reluctance to go down this road. I can also appreciate the sense of loss you feel when like you might have turned a corner dealing with this disease only to find out it was just another blind alley. And just how freaking annoying this disease is even on a good day.Just do what you feel will get you better the fastest. I ended up just wallowing in my "why bother, it's never going away, I quit" loop that played in my head. For almost a year I just let the tape play in my head. But in reality, self pity gets just as boring as MS, so I went back to square one and started up the beta seron again, got my self a steroid treatment, getting a new MRI and a neuro consult. ( I don't know if this irony or not, but I outlived my neurologist and my physical therapist who both died from cancer.)The whole point of this post is that you are facing a battle ahead, and maybe a few more down the road. You can either fight it or just ride it out, but tomorrow will come anyway. So listen to your gut or your doctor-whoever you trust more- and take care of yourself. You have survived this far and have much further to go. This setback will be dealt with, resolved, tolerated and mourned. And you'll go on to see where where the next corner will take you. Good luck.

Thanks for those words of inspiration. I do feel the same way in terms of dealing with it. It will pass and I have to live my life and just move on with things. I just wish I had a better life than this, as there is a lot of suffering with MS. Overall, I am very positive with the exception of the first day of my attack. I just crash mentally. Now, I am surprisingly jolly :) even though the physical symptoms have increased significantly. I also just told my boss this morning that I will be taking some time off in the upcoming days/weeks because I have a chronic neuro condition. I didn't say what exactly it is, although he might figure it out. I just don't feel comfortable disclosing and don't want to be labeled or associated with MS in any way. Plus who wants to hear my whole medical history, especially at work? I don't even know how to explain this stupid disease if I had to. It makes no sense whatsoever. The reason I mentioned is because I need to take time off for MRIs, doctors visits, rest, solumedrol, etc. I am praying for a miracle and hoping this attack leaves me soon.

Thanks for your support and kind words. Yes, and it is an annoying disease. I have more extreme words for it, but I will keep it civil here and just say that 'it is annoying' :)

Heya, I've never been inclined to be included in a support group of any kind until now. I've been diagnosed with r/r MS for 11.5 years, with several years of symptoms before that. Aside from a weak right leg, I have no paralysis going on, but severely debilitating fatigue, tinnitus, double vision and, worst of all, horrific panic attacks and anxiety that feel like the worst mental nightmare prison ever devised. Sometimes I have thick brain fog. Except for the tinnitus, things come and go. I've been rolling with it over the years, not with bells on my feet, mind you. In fact, I've also been pretty pissed off lately. So I hear you. I offer you my full emotional support and understanding. It's a maddening disorder. <br />
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Another thing that's been stressful for me is that people around me have no real clue what I'm experiencing, that the symptoms, although not visible, render me completely useless. I'm at the point where I need to call in sick because getting out of bed just isn't going to happen. Then I might go out dancing some night when I'm feeling ok and it makes me look like I'm making things up on the days I'm dysfunctional. Grrrrr....

Yes, all of the things you mentioned: mental fog, anxiety, vision problems are familiar to me. It is weird for other people to understand my symptoms, I completely agree. I do not look like a 'sick person' at all. Plus, I act like everything is fine. Sometimes it is very hard to keep inside and it comes out in a form of crying, bad dreams, anxiety. But overall, I am dealing with it. Attacks still scare the s**t out of me! No way of accepting or getting used to them. And they are all so different too that you never know what to expect.

Thank you for your support.

Please remember that you are NOT alone. Though we may experience ms differently, the effects on our emotional well being are quite the same. I know that scared feeling. It absolutely sucks!! Hang in there. It will get better. Hope to hear from you soon!!

Thanks so much. It is good not to feel so alone. I am hanging in there. I am doing a bit better psychologically, although this stupid numbness spread higher. MRI is on Friday then they'll decide if I should be on solumedrol or not.

Let me know how things are going! Ok??

Thanks. I will