I'm so glad to hear from you! I hope everything is going well for you.
Oh how I hope you are venturing on the right path. The reason I questionned about such a long relapse is that I had roughly 5 1/2 weeks last year of remission from my previous flare. My previous flare last year ended late September. In November I was seriously ill, ICU 5 days, 2 surgeries on L kidney. My stent caused too much irritation therefore I was bedridden for 32 days. After this is when experienced my first MS Hugs. In January I asked my GP for oral steroids b/c I feared I was starting to relapse again. They didn't work. So my Neuro started me on IV Solumedrol in March and urged me to get on meds, so we chose Copaxone. (my insurance company's red tape about this specialty drug delayed me being able to start treatment until June). I've been getting the infusions monthly, except for August, because of my hospital stay & same surgeries again - even the same Kidney!
Anyway, I've been seeing my Neuro regularly and he continues to state that I have not shown any improvement since Nov., that I am neurologically declining each time he sees me. Unfortunately, my last visit also informed me of new lesions on my brainstem which explains why I'm having episodes of deafness. My spasticity in my legs is getting so much worse. I honestly never thought that my "normal ms leg pains" could take such an intense detour. I'm taking Zanaflax (increased to max dosage), Amrix, and Valium - but I'm almost in tears because they hurt so badly, even down through my feet. I also take Hydrocodone for pain but it doesn't do anything anymore.
Honestly, I'm scared too. I'm having a lotm of different sensations and episodes of complete confusion with brief periods of unconsciousness that I absolutely have no memory of. Example. I begged my husband to take me to Sam's so I could get out and enjoy my first shopping since Nov. I even rode in the scooter. Everything was going well until we were almost finished. I remember being by the bread section, that nano seconds were going by with my husband getting upset with me and then.....hey I'm in my bed at home, who put the food up? How long have we been home? My husband told me that I just started lagging behind, he then noticed that I would stop. He told me that he walked back to check on me and asked me questions but he couldn't understand what I was saying. My speech was slurry and wasn't making any sense. Then he said I would try to start going and then just quit, my eyes rolled back in my head, and my head just flopped wherever. He told me that it was the hardest thing to to get me out of the store b/c he couldn't keep me awake or aware, and that if he tried to get me to "wake up" I was very aggitated and basically mean. I don't remember this. We checked my meds to make sure they weren't the culprit, but I hadn't taken any several hours prior. (most of my meds' increases are at night). Well, it's happened to me several more times now. I am anxious to get to my Neuro on Sept. 4th.
The really strange thing is that these episodes started after my most complexing new experiences: First it started like this, I was laying in bed awake and started feeling a tingling pressure like sensation inside my head (my head felt like it was a ballon being filled up but with tingling in it too), it consumed my entire head and then symmetrically traveled down both of my arms at the same time. This sensation would occur over and over for a few minutes and then stop. I had told my husband about it right afterwards. Well, it occurred that same way several more times; however, I wanted my husband to feel my skin or muscles when this was occurring. Therefore, we decided I'd let him know & he'd check. The weirdness continues: They occurred and I was verbally seeking my husbands attention and looking at him and it was like can't you hear me?? I could hear me....why can't he hear me? He was awake laying next to me and I was awake so I can't understand it. Well, I feel as if I should be a lab rat. THIS sensation now consumes my entire body. I feel it starting in my head and it just goes right through me and yet I still can't verbally make sounds my husband can hear????
I've searched the internet but I can't find anything to really pinpoint it.
You know Gretchen, I think your neurologist might be on to something regarding your neck. I've never thought about the spasticity playing a role there but it would really make a lot of sense. I started having neck problems/leg pains when I was in first grade. My first neck problem occurred when I turned my head to say something to a girl sitting beside me & ouch! I couldn't move my neck back! My neck muscles were frozen stiff. A dr painfully forced my neck to the front and placed me in a neck brace for 6 weeks, never knowing the cause. Then in my early 20's I woke up one morning thinking I slept wrong but it continued to get worse, to the point my neck was frozen sideways. I was sent to therapy to get it tilted upright and straight. I remember my muscles being hard as bricks. My PT told me she had never seen a case like me before and she was fascinated. It took over 4 months of ultrasound heat waves, massage, manipulations, and even having to do the pulley over the door w/me on the other side going against the weights to get it straight!.
I am just tickled pink that you shared this with me! I am going to seek a second opinion for the Neurosurgeon but I have to wait until November 2nd to get in.
I know I posted too long but I guess I just needed to vent it all out. It's so comforting being able to talk with someone who can understand.
Please keep me updated on how your neck is. I've had the epidural injections and they truly helped my pain levels. I will say that the cortiszone burns like no other in that type of injection, but it only lasts a couple seconds and then the relief starts setting in. I love my dr that did my injections. I never felt the needles, only the medication. If you get to a point that your arm hurts really harsh, try raising your arm and resting it on your head, or just elevate your arm above your shoulder. Somehow this can release some of the pressure on the affected nerve(s).
It helped me both times tremendously.
Thank you so much Gretchen!
I sincerely appreciate your guidance and listening ear.
I promise I will try to make my future posts shorter.
Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005