Heuros and Neuros
Okay firstly I can't help but think Wow I'm really getting into this blogging thing! Who knew? I'm really enjoying sharing what's going on with me and getting it out there. I do hope one day to connect with more MS moms and share some stories and coping ideas. I hate to think about how many people are choosing not to have children because of their MS and it really saddens me as children are so amazing and MS is really crappy and having to choose MS over kids must be extremely hard!! I'm so grateful I dove in being nieve and not really caring about how I would deal during a relapse. I just assumed I would manage but never envisioned it being this hard!
Today! Again I'm bless an old friend sep up after reading last nights blog post and offered to look after Aidan while I went to the doctor! It was so helpful especially because today was a crappy day. My balance is way out of wack!!! Sigh. I almost fell over countless time so again so glad Jaimie was able to help me out! Aidan loved making new friends and obviously enjoyed hanging out at their house. Yay for indecent kids- he didn't even flinch when I left him lol.
So I saw a new Neurologist- making the count 3 that have really followed me. This beautiful well put together lady was matter of fact to the point and AWESOME!! So helpful and honest. She obviously cares about her job and is very good at it. She is also compassionate!! Yay! She did an exam- it's always the same testing muscle strength, co-ordination, reflexes and compiling a list of symptoms. She offered me steroids which after talking with my family I am taking. She said it's a bit late in a relapse fore them but she thinks they will still help. Side note steroids (Prednison) totally suck but it's only 3 days so I know I can do it.She also suggested I taking some MS drugs to help slow down my symptoms she even gave me 3 options! What amazing service! Copaxone, Gilenya (under review but stil considered safe?), and Tysabri. So a few things to try and consider which is more than I can say about my previous Neuro experiences.
As for her opinion on CCSVI I understood her to say that she didn't really understand how the veins would effect as many symptoms as people have described. She did say that it seems that lots of people have experienced an increase in energy and that there are more people having negative side effects than are reported (mainly do to not wanting to make CCSVI look bad?). She has had patient who came in feeling like they were walking better but from her testing she saw the opposite effect. So she said be cautious of the placebo, don't get a stent (thought most aren't doing this anymore) and beware of locations that 'blow out' your valves as 'they are there with a purpose'. She did promise to follow up with me and not leave me hanging out to dry as the news suggests- admitting that she isn't an expert in veins so her ability is limited.
Oh and she was totaly suportive of having another child and gave me a positive outlook for the future suspecting that with another pregnancy and some MS drugs (new one aiming to come out next year she says?) things are changing and looking up. All good news for me I hope. Oh she also suggested I get myself a walker - and fast since I almost feel 2 times in her office and heavens knows how many times throughout the day. Oh and UBC MS clinic is going to be doing a study on CCSVI this year!! yahoo!
My thoughts after today. I'm tired, I'm worn out and 4 weeks of feeling this way is a long time. The steroids are in my system in crazy dosages and I'm even more worn out than I have been. It's 3 days and won't effect my CCSVI surgery. I still think based on my experience of vaso-dilators increasing my energy and stamina as well as the odd feeling of being strangled without the breathing trouble I don't have much to lose with going through with CCSVI at this point. The fund raiser with www.wamsfoundation.com is this Friday and I've already raised about half of what I need between donations of items and cash. I feeling optimistic and as I've said even if it's preventative in some way that would be great.
Today! Again I'm bless an old friend sep up after reading last nights blog post and offered to look after Aidan while I went to the doctor! It was so helpful especially because today was a crappy day. My balance is way out of wack!!! Sigh. I almost fell over countless time so again so glad Jaimie was able to help me out! Aidan loved making new friends and obviously enjoyed hanging out at their house. Yay for indecent kids- he didn't even flinch when I left him lol.
So I saw a new Neurologist- making the count 3 that have really followed me. This beautiful well put together lady was matter of fact to the point and AWESOME!! So helpful and honest. She obviously cares about her job and is very good at it. She is also compassionate!! Yay! She did an exam- it's always the same testing muscle strength, co-ordination, reflexes and compiling a list of symptoms. She offered me steroids which after talking with my family I am taking. She said it's a bit late in a relapse fore them but she thinks they will still help. Side note steroids (Prednison) totally suck but it's only 3 days so I know I can do it.She also suggested I taking some MS drugs to help slow down my symptoms she even gave me 3 options! What amazing service! Copaxone, Gilenya (under review but stil considered safe?), and Tysabri. So a few things to try and consider which is more than I can say about my previous Neuro experiences.
As for her opinion on CCSVI I understood her to say that she didn't really understand how the veins would effect as many symptoms as people have described. She did say that it seems that lots of people have experienced an increase in energy and that there are more people having negative side effects than are reported (mainly do to not wanting to make CCSVI look bad?). She has had patient who came in feeling like they were walking better but from her testing she saw the opposite effect. So she said be cautious of the placebo, don't get a stent (thought most aren't doing this anymore) and beware of locations that 'blow out' your valves as 'they are there with a purpose'. She did promise to follow up with me and not leave me hanging out to dry as the news suggests- admitting that she isn't an expert in veins so her ability is limited.
Oh and she was totaly suportive of having another child and gave me a positive outlook for the future suspecting that with another pregnancy and some MS drugs (new one aiming to come out next year she says?) things are changing and looking up. All good news for me I hope. Oh she also suggested I get myself a walker - and fast since I almost feel 2 times in her office and heavens knows how many times throughout the day. Oh and UBC MS clinic is going to be doing a study on CCSVI this year!! yahoo!
My thoughts after today. I'm tired, I'm worn out and 4 weeks of feeling this way is a long time. The steroids are in my system in crazy dosages and I'm even more worn out than I have been. It's 3 days and won't effect my CCSVI surgery. I still think based on my experience of vaso-dilators increasing my energy and stamina as well as the odd feeling of being strangled without the breathing trouble I don't have much to lose with going through with CCSVI at this point. The fund raiser with www.wamsfoundation.com is this Friday and I've already raised about half of what I need between donations of items and cash. I feeling optimistic and as I've said even if it's preventative in some way that would be great.
You totally are doing this blogging thing and its awesome! I love how your blog has developed into a very personal narrative, it works well. Though there is still so much going on for you at the moment this post seems to have a positive tone to it and I hope you are feeling it too and not just writing it. You are amazing and I am hopping so hard that this treatment will have positive and improving outcomes for you but I am so glad to hear the latest Dr had great things to say too. k x
ReplyDeleteThat is really exciting to hear that UBC is doing a study on it!!! Wow you are STRONG mama, STRONG! Your strength humbles me. Massive hugs
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