kiara

Kiara
I am sorry you had to quit your job. How are you doing other wise? Any dr appt yet? I was thinking about you. If you need to talk I am here for you. HUGS!!

Kiara - I've found that when walking, especially when doing stairs, I am very stiff. Basically I am locking my knees. It might make it easier to walk but maybe that's what's causing my knee pain. I try to walk "normal" but can only do it for a little bit. My calves don't have the strenght they used to. I used to run up and down hills as my workout. This is so frustrating and I can't get a diagnosis. Went to doc Tuesday for x-rays of knees and am waiting for results. Good luck to you Tuesday. I am looking online for soft knee braces for support. Like you my legs shake going up and down stairs. My knees now feel like they are twisting even when I am laying down. I don't understand this and am not getting any answers either!

Kiara, you just left your job? I am thinking of taking a desk job (big pay cut) but driving is really hurting my knees. My shoulder feels better. Saw doctor yesterday - he thinks I have a strained rotator cuff that's getting better, but just in the last week, my knees are killing me. They feel weak and unstable. I've been having sharp, stabbing pains in my left knee and now pain in my right hip. I don't get it. No doctor seems to have any answers! Let me know how you're doing. I am hating all this pain.

Paul, I can understand how you're feeling....exactly like me. I had lo leave my work as I'm not able of doing it anymore....too much time standing and walking. I told you to live your life at the best, I'm trying too but with these symptoms is hard. I've always been so healthy and active, I'm losing my hope too. Sorry for this sad post.

Hi kiara. I'm trying to live my life but my symptoms get worse from week to week. I'm shaky and in a lot of pain. I've been awake for 30 straight hours now because I woke up early the other night, in pain (knees), then went to work. Maybe I had a nap of an hour or so. I don't want to start taking pain meds (I take one every couple days now). I don't know if my joints are hurting because there is extra pressure put on them because of weak muscles or because of my cipro reaction. Like you, I feel like my knees are using extra effort to support my body. I am always shifting from leg to leg while standing. Now both my legs are painfully sore most of the time. I see another doctor Tuesday. I am going to try to get an MRI of my knees and shoulders to see if there is alot of soft tissue damage. This just seems like a downward sprial. Like you, I was always athletic, now I am a shell of myself and in pain as well. I am starting to lose hope. I hope you are doing better than me.

Thanks for your response regarding the Tizanidine. You confirmed what I was thinking. A different doctor prescribed carbamazepine back in October and it did nothing form me to relieve my muscle tightness.

I'm very happy to have some relief of my symptoms, but the fact that the Tizanidine works seems to confirm my fears. I've been looking for examples of UMN disorders that don't continue progressing or progress slowly. I guess we just have to take it day by day while in limbo.

Hi Kiara, I just read your posts. VERY strange. I also mentioned to my doctor yesterday that my feet are shrinking. I KNOW this to be the case because I put on an pair of running shoes that I had not worn in a year. I had kept them tied the whole time. They were very loose. He said that he had never heard of that before. I thought my feet looked thin but this confirmed it. Sometimes, I would wear this year's running shoes untied, but if I do that now, they would fall off when I walk.

Also, after a 3 year wait, my name just came up for nursing school. I'm afraid to start now, given the fact that I have a full time job and my symptoms seem to be changing literally every week. I can't help but wonder if the doctor who read the MRI of my spine missed something... my next follow up is February 26th. Do you get alot of muscle and joint soreness? I do, but my doctor thinks that might be caused by the spasticity and hyperreflexia.

I was in a brace for 5 years - from the 1st day of 1st grade all the way through 5th grade. I have never had any back issues or pain. Can't help but wonder if the scoliosis and this situation are related. My case is complicated by the cipro. All I had was tightness before this. I hate the idea of waiting years to get diagnosed. I am very interested in the scoliosis connection and your case as well. I'm still having a hard time wrapping my head around the idea that, now after 41 years, exercise is bad! I'm going to read your old posts to see how your symptoms are similar to mine. Good luck to you too!

Ciao Kiara

Hi Kiara. Sorry I could not get back to you all sooner. The day after my return from Mayo, I moved into a new place, and I still don't have internet service switched over. Anyhow...the specialists says it is not ALS, and this EMG came back normal. I'm very happy, but he doesn't know what is causing my symptoms. So he is sending me to see another specialist regarding my chronic EBV. I just hope it is not an early form of ALS...but I guess I have to wait and see the next slecialist. Hopefully he will have an answer. How are you doing? Hugs.

That is a very unfortunate situation and I am sorry you have to go through this. But yes I have heard the same thin about young people so hopefully it holds up. Keep me posted on how you are doing

Yes when things get worse it is very hard to ignore them. I know what you mean. You are a nurse?!?? That is a challenging job without adding this to the mix. You must be a very strong women Kiara so therefore I know you will make it through this!!!

Hey Kiara. Well I think maybe because it hasn't sunk in just yet. Maybe in denial?? I don't know but what I do know is that when I sit down and actually think about it I get very scared and sad. So I just do my best not to think about it (easier said then done). But I think once my progression hits the next stage then it will be tougher for me to be so positive but I don't know. Always remember you can ask me any questions you would like
Thinking of you

Mine were real nice. We had a big dinner and quiet day. Is there any way you can get on a cancellation list for a earlier appt? Happy Birthday to your son. My grandaughter turned 8 on new years. I am sending you strength and hugss.

How were your holidays? How are you doing? I was thinking about you. Don't you have an appointment coming up?