Hi everyone,

I had an appointment with my Neurologist today. Before I went to see my neuro, we had an appointment at my children's hospital to get the splint but the traffic was that bad that we ended up missing the appointment. The hospital that I go to is about 15 miles away from where we live but the traffic is always really bad, no matter what time you go. We are going to have to get the Orthotics take my splint to my Physical Therapy session on Thursday, if they can.

My neurologist is really nice. I saw him when I was first diagnosed with RSD and he said I had a classic case of RSD and refered me to my PM Doctor. I went to see him about the really bad myoclonic jerks/spasms that I am having in my leg. When I last saw him, he said that if they didn't settle, he would prescribe me a med called Keppra. He took a good look at my leg and the rotation in my foot (dystonia) and said that he doesn't want to prescribe any meds at the moment because the side-effects would possibly outweigh the benefits. He feels that if he was to prescribe me another med, it could potentially make me very weak and take me off my feet again, which is the last thing I want.

My PM Doctor suggested using Botox has it can help in some cases so we mentioned that to him and he said that the best person to see would probably be an Orthopaedic Surgeon. He feels that because the last 2 nerve blocks caused complications, the botox could make my muscles that weak that I wouldn't be able to walk again so at the moment he isn't suggesting it. He said that the Botox could paralyse the muscle that is working overtime but could make the other muscles in my leg worse or weak and just make my foot rotate inwards, instead of out to the side. He said not to dismiss it all together but at this time he doesn't think it would work or would create more problems than enough.

The spasms in my leg are a lot worse now than when I finished the PT program in July and the Neuro said that is probably because of the flare of the RSD in my arm. He feels that my body is reacting to the pain in my arm by causing the spasms to get worse. Hopefully the spasms will get better has my arm settles down but if they don't we have to call him straight away to see what he can do.

He feels that the best way forward at the moment is Physical Therapy has it comes with no side-effects to deal with (other than the increase in pain after each session). I have to go and see him again in March or April and he will then decide what to do, he keeps in touch with the pain team at my local children's hospital so they will keep him updated also.

Have to go and lay down has my arm is hurting but just wanted to update you all. I will let you all know how my other appointments this week go.

Love,
Alison

Thanks for the update..
Hang in there Allison, you are a fighter.
Keep us all posted and get some rest.

Hi Allison,
My name is Loretta and I have been keeping up with your ups and downs. Sounds like you have a good Neuro. Dr. I'm glad you are with a Children's Hospital. I know how hard physical therapy is-12 years ago the day following left breast surgery, my arms swelled up big time. After they withdrew fluid 2-3 times, shoulder froze up. Sent to a Rehab. Dr. to oversee physical therapy. I started massage therapy on my own ,(insurance doesn't pay for it) a hour before the physical therapy. It softened the tissue and I felt It would make the physical therapy go faster. After about 50 pt sessions, they sent me to ortho surgeon and we wanted to operate and break my shoulder adhesions. I said no thank you, will stick with the pt. Didn't know at the time I had RSD, but glad I said no, as we all know surgery is not a good thing for RSD'ers. Another 50 sessions, and I had nearly full range of motion. So glad I did that, it was torture, but have full use of arm now. They told me it might happen to other shoulder. I thought that sounds strange. We moved to Arizona, our daughter went to college there, court reporting school. A few months later, the right shoulder started to freeze up. Found a great physical therapist and got that fixed much quicker. He had traveled as a pt with the pro golf tour. He set up a pt practice and it was just a mile from our house. We have a lot of golf courses here, and a lot of pros live here. The weather is good for RSD for the most part. Oregon, where we moved from is rainey, and damp. My fathers family was from England.
Anyway, I read your comments about pt and for most of us, that is way to go, as surgery usually complicates it.
We have one daughter, age 29 now and married. You sound so much like her, kind and caring about others, with a lot of compassion. determination, and strong ,yet sensitive. Her kind of work isn't easy, but very interesting. Doesn't work in a court room usually, does depositions, pre-trial- transcripts, has done rsd malpractice case.
How is your foot Allison? Is there a pt with water therapy, either hot tub or swimming pool. I've even done work in my bathtub. My toes started to curl and lift off the floor. My Doc gave me exercises, I did them and eventually toes touch the ground again. Swimming has been my friend since getting this. Of course, I couldn't swim when my shoulders were messed up. The exercise was sqeezing my toes tight and release. Doing them in the morning after I could get up and around, meaning after morning meds.
I've had this Dr. for 4 years or so. I started having spasms, electric jolts, lifting my head off the pillow from a sound sleep. scarry. just a lot of involuntary movements. I went on neurotin and had to go up to 3200 mg for everything to stop. made me tired, gained weight, I'm trying real hard to loose it. About a year ago, switched to Lyrica, which I like much better, and helps with pain more for me. On 300 mg. a day. I was on 400 for a while, maybe 6 months, then back down to 300. I see him once a month. Hoping I can go down to 200. He is a pychiatrist, neurologist and pharmacologist, schooled in New York and practiced there and moved here. He teaches on the west coast weekly, so just practices part time. Believe it or not, I found him out of the phone book! smile
My heart goes out to you, Allison. I know you miss your 'life' school, and friends. That was the hardest thing for me, my life changed dramatically too. I have full body RSD.
My husband is really a trooper. He always did have energy than myself. Your mom sounds like a doll. My daughter probably knows too much about RSD, she is sensitive, so I try to save her from the day to day traumas, and my husband too. But I can always talk to him, they have both been with me to my Dr. asked questions and I'm glad he met them.
Take care, and thank you for all your encouragement we all get from your posts. Say Hi to your Mom. Loretta

Hey Ali! Just popping in after seeing your post to say how very much I admire such a young person as you, handling what you go through on a daily basis. You are one strong little lady and I'm learning from you; even at 53!

Take care Ali and glad to see you posting.

Thank you all so very much for your kind words, they really mean a lot . You are all the best!! I have so many hospital appointments this week that I don't know whether I am coming or going lol. I will keep you all updated.

Loretta - I am sorry you had to go through all of that. I have a lot of the symptoms you describe, a lot of my limbs freeze up however I suffer from Dystonia has well has the RSD. I have weekly Physical Therapy sessions at my weekly hospital and also have a 'home exercise program' that my PT's have given me that I need to do at home on a daily basis. It's really tough and very painful, but I manage. I tried hydrotherapy and it didn't really help me but the PTs I was seeing then, weren't very experienced in dealing with RSD. We don't have a warm water pool at my hospital but will look into it. Thank you so much for keeping up-to-date with my story. Love, Alison.

Have to go for now has have a meeting with school in 2 hours and need to get ready. Will let you know how it goes.

Thanks again,
Alison

hi Ali, just wanted you to know I think of you often, I am so glad you are keeping us posted your spirit is so great- your an inspiration for us all. I hope the physical therapist knows what they are doing, I know you have been down this road before and I also know how severe your leg spasms are.. good luck to you Ali-please keep posting. your in my prayers. warmest regards, cz

Hi Alison,

You mentioned that your doctor may put you on Keppra, and I just want to let you know that I have taken Keppra for several years now. It has worked well for me, but it does cause some muscle weakness and fatigue. The main thing for me though is that it makes my "brain fog" much worse. I really don't like that spaced out feeling but the benefits of taking it outweighs the things I don't like about it. It really helps with my nerve pains.

I hope that information will be helpful should your doctor decide to try it. If you tolerate it well, I think you will be pleased with the results.