I've been through hell and back the past month, having to go on 3 rounds of heavy steroids to try to break my severe symptoms, and finding out that my brain MRI was really bad and all but confirmed MS a couple of weeks ago.
My neurologist is currently fighting my insurance company to try to get me on Tecfidera (they'll only pay for Copaxone or Interferons unless you fail two of them - and he refuses to put me on Interferons with my history of depression), so that's up in the air, and meanwhile I've gone back to work, but I still have symptoms that haven't gone away.
My right hand is still partially numb, and my grip is weak. I drop things if I'm not careful (and sometimes even if I am) - this is persistent. My left hand goes in and out of numbness as of the past few days, my vision is still slightly blurry and doubled sometimes in one eye, but my leg is the worst part. The tremor is the only symptom I had from early on that has never improved. It starts out in the morning with minimal tremor but my leg feels very heavy, and the tremor grows throughout the morning until it gets to the point where I have to stop every few steps until the spasms subside (the tremor is at the bottom of my leg, so it shakes my foot). The last few days, I've had periods of time (like a few hours a day, totally at random times) where the tremor is completely gone without warning, but it comes back without warning too. One minute it's not there, and the next minute it's horrible again.
My neurologist hasn't had anything super hopeful to say. The symptoms I have now could be permanent, or they could go away on their own in a matter of weeks or months. After three massive rounds of steroids, putting me on more isn't going to do me any good. This diagnosis would be bad enough, but the thought of already not having control of my body at 29 is terrifying.
I'm seeing my old therapist again, but I feel so alone in this, and I don't know how to accept this as my life now. Most people at work don't know yet, and several that I'm close to don't like it if I try talking about it. They prefer to just pretend it doesn't exist. I've read about how most people live more or less normal lives for years after their diagnosis, and I'm sitting here wondering if I'll ever be able to walk normally again.
I feel like I'm grieving. I wasn't totally healthy before - I've suffered from Fibromyalgia and migraines since I was 16, so I'm not new to having bad days. I am new to actual damage being done to my body, though, so it's a different sort of feeling. Especially when a lot of people don't understand you. The only people that seem to even try to understand are those that have family members or friends with MS, or the nurses at work that are familiar with the disease. It's also different because I don't have control of my own body, sometimes worse than other times.
How did you cope when you were diagnosed? Did you have residual symptoms from your first attack, and did they ever go away later on?
I'm so sorry I know that this is going to be hard but at least you're in the right place to get the help and support you need now. I'm sorry I have to go get ivig this morning and I just seen your post and really wanted to let you know that you are not alone in this fight!
I am so glad you reached out....we are here to support you! You can call 1.800.344.4867 (M-F 7am-5pm MST) and be connected with an MS Navigator. You can also find other support resources, including support groups by clicking on this link.
We also have a lot of information for people who are recently diagnosed that may interest you. Our program Knowledge is Power
is a self-paced learning series for anyone facing a new diagnosis of MS and is presented in a series of topics to help people adapt and live well with MS (includes personal stories and professional resources).
Lastly, we have resources to help you appeal the denial of Tecfidera by your health insurance and resources regarding employment. I included links below.
Health Insurance Appeals
Stephanie, MS Navigator
The first attack can be extra hard because of both the diagosis and
the fact that every issues is new and you have no experience or frame of reference. But try not to stress (easy to say/type, huh?!) and know that most stabilize and recover some level of symptoms.
FWIW, this MS doctor https://www.youtube.com/channel/UCkQopiiFbAo0zS_9BmRF3Bg has a great
video for newly diagnosed MSers.
For-profit, private health insurance corporations want to use the discredited "escalation theory" of managing the disease. That makes the wealthy shareholders of those private corporations even richer, but it gives us -- the patients -- literal brain damage (lesions). That video link above also has an interesting video on that doctor's views on the "escalation theory."
Your initial range of symptoms sound sort of like my first attack, only it was my left hand and leg/foot instead of the right.
How did you cope when you were diagnosed?
LMAO! Not well. I had 'roid rage and all sorts of craziness on oral prednisone, and had a variety of symtoms. MS knowledge much less in the 80s. One good thing for you today is we're much more focused on the mental health side of the equation.
I am so sorry to hear about your recent MS diagnosis and the tough time you are going through.
I was diagnosed in 1993, and had a rough time at first with numbness, pain, hypersensitivity and difficulty walking. However, after taking Prednisone for 6 weeks things began to improve, and within about 2 years I was almost symptom-free. For the next 13+ years I was able to do all the things I had previously done and even more, with the bonus of really appreciating my good health and energy. So be hopeful...you could have many, many good years of feeling really well.
It is now 26 years since I was diagnosed, and I just recently "graduated" to a wheelchair. Even though I am in a wheelchair now, life is still good.
I understand when you say that you feel like you are grieving; I have felt that way many times. It is okay to let yourself feel the sadness, just don't stay there for too long. Pick yourself up again so you can return to a more joyful place.
Try to remain positive. Our attitude makes a big difference in our lives. And be grateful; try to find something each day to be thankful for. Attitude and Gratitude... they really do help to make life better.
This is the first time I have been part of an MS "community". I just joined yesterday. I feel like God led me here, and I feel like part of the reason is to encourage you and let you know that God loves you and He wants to give you hope and peace.
How did I cope? How do I still cope? ...with God's help. That may sound strange, but I am serious. I have a relationship with God where I can talk to Him, and I know He understands me and loves me. I have several quotes from the Bible that remind me that He is always here for me. When I choose to trust God instead of worry, I feel a real peace.
I hope you are encouraged to know that there are many who understand at least part of what you are going through, and you are not alone. Also, be assured that you have incredible value, no matter what life looks like for you.
I am glad you’re pursuing therapy— it can really help to have someone in your corner. It sounds like you’re coping with a lot, with some really huge things and big changes. I found mindfulness exercises helpful. There are some great free apps like Headspace that can help you explore them.
I know acceptance can feel like giving in, but sometimes we fight against the riptide when we should be swimming along it. From what it sounds like, you’re going through a large physical change which may or may not change for the better or worse. I would allow myself time to grieve and heal. Be kind to yourself, try to think about what advice you’d give someone else dealing with your struggle. Give yourself time to adjust and accept.
I find it helpful to try and focus on minute positives, when dealing with large issues. Buy yourself some pretty flowers. Reread a favorite book, rewatch a favorite movie, spend time playing with a pet. It seems hokey, but it can help anchor you in the now, while developing a habit of happiness. I wish you the best of luck, my friend, and will always be willing to read whatever you need to share.
I completely understand how you feel, I was diagnosed this year as well, and went through all the emotions and am still angry from time to time. The numbness in my leg stayed around for months and when that went away some other symptom would start. I try to stay busy and just rest when I need it.
I am wondering if there is something that your doctor can do to help you with meds.. I was diagnosed in February and did Steroids, Im on B12 injections monthly and that gives me a boost of energy and I take a high dose of Vit D. I was taking Gabapentin until my dr and I decided on a medicine together, We decided on Gilenya so I didnt have to do injections. My insurance denied Gilenya and they also said I needed to fail 2 meds first, my MS Specialist kept fighting it then we went to the Gilenya Go program and Novartis is funding it now. I have been on Gilenya now for 3 weeks and am getting my mediciation sent to me through their pharmacy. Hang in there, I wish you the best as this is all frustrating, And I pray for a cure every day.