Never-ending Beginning...

[saintchaos]

I was diagnosed with MS in January of 2015, after having beginning symptoms starting at the end of October 2014. I began Gilenya. I am not even sure exactly how many lesions were on that first MRI, however I did read the report in August of 2015. That MRI had over 20+ lesions, meaning way too many to count. I'm unable to have steroids, my body can't handle them, so I have to heal naturally, which is taking a very long time. Also, because my JCV count was very high at a 1.7, they kept a very close eye on me. As of January of this year, there was no progression, however no healing either. My specialist says he sees very little scarring and has high hopes for me, but with never-ending symptoms of pain, numbness, shaking, headaches, cognitive trouble...I am beginning to lose hope that things will ever begin to get better. I was an artist before this, able to draw color portraits, now I can barely draw a straight line. I feel like my hopes and dreams are lost, not only that but my relationship is falling apart after gaining 60lbs between trying different steroid treatments and being unable to physically function well. Currently I am only able to walk around and take care of my children because of morphine, which barely takes care of any of the pain in my legs and lower back, but every person that sees the bottle looks at me like I'm some sort of drug addict. I don't feel any sort of high off of the medicine, I don't even feel much relief, but the fact is the doctor has built my tolerance so high over the last year and a half, nothing really eases the pain of my raw nerves. My neurologist believes my MS developed many years ago, but I ignored symptoms and was never diagnosed, which is why it is so bad now. I am miserable and feel like my life is falling apart, if it weren't for my children I probably would not have made it through, but here I am. I am posting on here because I need some reassurance, someone who has been through an attack as bad as mine, for as long...someone who can assure me that there is a light at the end of the tunnel. I just had another MRI a week ago, I'm praying for something positive, but as my symptoms haven't let up much I fear the chances are slim... Thank you. *Saint Chaos*

[saintchaos]

To be completely honest, I have a very good support system. Great family, whom I'm very close to...wonderful, caring friends who have helped me out here and there along the way. I'm just becoming someone who I never wanted to be. Bitter. Basically a shut in, because I can't do much else right now. I'm watching my children's lives pass by and can't be the involved mother I once was. My son has special needs and I'm unable to be the mother to him I once was. Most of their lives I've been that strong single mom that took on everything and could fight any battle, now my kids watch me fall apart physically, mentally, emotionally. I know there are many, many people with this disease...I just want remission. I need to be better. I am also a writer, I have been an artist and a writer my whole life and now writing is the only thing I have to fall back on. Though currently I am eating into the retirement I have built with years and years of hard physical labor to support my kids alone, with no child support from the loser I chose as an ex-husband. I had no choice but to file for disability after months of having to take leave from my dream job. I'm almost positive that job is gone, though my boss misses me terribly, I've been gone almost a year now and I am far from reliable with this disease...though the sign keeping sick people out of the business is still up on the door. My boss' wife has Crohns Disease, so he knows how autoimmune diseases go, which is why he doesn't really expect me back. His wife hasn't worked for years.However, most importantly I consider him more than my boss, he is my friend. He always did tell me to consider him a friend first and a boss second, he cares more about what's best for me than his want for me to return to the job. Sometimes though, it doesn't matter how wonderful your support is, they don't truly understand. They can't. I almost lost my biggest supporter, because of a cognitive problem that she can't understand. I've tried to explain to her that I don't hear tones in my voice, I don't hear how loud my voice is at times. I offended a RN with a tone of voice I apparently had and I didn't even mean to, I had no idea why she came at me like she was going to fight me. I completely fell apart in the doctor's office because I had no idea what I had done to deserve her wrath and my mother being angry at me. Apparently it wasn't what I'd said, but a 'tone' I'd used. To this day, two weeks later, I still have no idea what I did to deserve it. My mother forced me to apologize for something I had no control over, something I didn't even realize I had done. Sometimes it's really hard not to give up, because no matter how much someone says they understand, they really can't...most have no idea. To be honest, someone who even compares their own problems with mine just makes me even more angry. The RN said to me, "I have pain every day." I just wanted to throw in her face that she still had her dream. Her so called 'pain' didn't basically cripple her. That is not why she got angry with me. She got angry with me because she felt like I accused her of forcing me to change my meds without my consent...which she did. She was pushy with me and because I had one month where my medication was working the way it was supposed to, taking away my pain so I could finally be a little more active than all day on the couch, she dropped my medication down by a third of what I was taking, after only a month. I didn't want to, but I didn't want to go against her when she kept repeating 'why don't we just try' over and over again. She did -force- me to change them and I'm sorry she was offended, but to me she was wrong, on multiple levels. My mother, who lives an hour away, doesn't see the struggle I go through daily. She has no idea what it's like to barely be able to make it around my own house. She has no idea of the hatred I hold toward that woman, because she took the ability to function away from me. For a week, in that one month, I was finally able to go to the YMCA and walk. I was able to play with my kids. I was able to go outside, have a picnic, have a camp fire... That woman took it away from me and yes, I was angry and frustrated, but I didn't mean for it to come out in my voice. I didn't mean to offend the woman. I'm not that person, I never have been. I've always been the person that let's others walk all over me and then goes back for more. I'm the nicest person most people have ever met, I wouldn't mean to offend her, but now my meds are in jeopardy because of something that I couldn't control. She told me that because I got upset, because I had no idea what I'd done to offend her. My words to her were that I wanted to discuss the change in meds, because I felt like I was forced to do without enough medication to allow me to function. This is what offended her. When I became upset for not knowing what I had done she called it 'drug seeking behavior' and said she had to 'put it in my file'. Me...the girl that does without when she can, the girl that usually has 10-15 pills left in the bottle at the end of every month... If she truly understood what it was like to live a life in pain, she would understand why I fell apart. Hell, most of the time I'm barely keeping it together anyway. It's one thing to do without when I can, it's an amazing thing...but it's another to be without when I need it. Sometimes I find myself almost wishing for an aneurysm, because I'm starting to feel like misery is going to end up my version of normal... I'm sorry, I'm not going to read your book, mostly because I don't have the extra money, but partly because it doesn't have anything to say that I either don't already know or haven't already been through.

[lyndacarol]

I was diagnosed with MS in January of 2015, after having beginning symptoms starting at the end of October 2014. I began Gilenya. I am not even sure exactly how many lesions were on that first MRI, however I did read the report in August of 2015. That MRI had over 20+ lesions, meaning way too many to count. I'm unable to have steroids, my body can't handle them, so I have to heal naturally, which is taking a very long time. Also, because my JCV count was very high at a 1.7, they kept a very close eye on me. As of January of this year, there was no progression, however no healing either. My specialist says he sees very little scarring and has high hopes for me, but with never-ending symptoms of pain, numbness, shaking, headaches, cognitive trouble...I am beginning to lose hope that things will ever begin to get better. I was an artist before this, able to draw color portraits, now I can barely draw a straight line. I feel like my hopes and dreams are lost, not only that but my relationship is falling apart after gaining 60lbs between trying different steroid treatments and being unable to physically function well. Currently I am only able to walk around and take care of my children because of morphine, which barely takes care of any of the pain in my legs and lower back, but every person that sees the bottle looks at me like I'm some sort of drug addict. I don't feel any sort of high off of the medicine, I don't even feel much relief, but the fact is the doctor has built my tolerance so high over the last year and a half, nothing really eases the pain of my raw nerves. My neurologist believes my MS developed many years ago, but I ignored symptoms and was never diagnosed, which is why it is so bad now. I am miserable and feel like my life is falling apart, if it weren't for my children I probably would not have made it through, but here I am. I am posting on here because I need some reassurance, someone who has been through an attack as bad as mine, for as long...someone who can assure me that there is a light at the end of the tunnel. I just had another MRI a week ago, I'm praying for something positive, but as my symptoms haven't let up much I fear the chances are slim... Thank you. *Saint Chaos*

Welcome to ThisIsMS, saintchaos.

I am glad to hear that you "have a very good support system." Now that you have joined our community you have even more caring friends. We are good listeners. (I would just suggest that you separate your posts into more paragraphs – for easier reading for those of us with vision problems.)

Since you have given us details of your situation, I hope you are open to further questions. I am curious to know about the testing and investigation that led to your MS diagnosis in January 2015. (The symptoms of MS are found with many other conditions as well.) For example, vitamin D deficiency can cause many of the symptoms you described. Have you had a vitamin D blood test (the "25-hydroxy D" test)? Have you been tested for a possible vitamin B12 deficiency? Have you had a magnesium test? Zinc test? Testing for celiac disease? If so, will you share the actual test result numbers with us?

It is entirely possible that not all your symptoms are MS-related. There may be another cause for one or more of your symptoms, which could be effectively treated and, thereby, relieve those symptoms.

Each of us has a unique set of symptoms, unique experiences, and unique opinions; but we can understand your situation on some level. And of course, sympathize. In my opinion, you are a strong, articulate, intelligent, and capable woman with many burdens to bear – even if it means finding a new medical team, I think you will find help for your situation.