Hi everyone - just an intro & quick quuestion

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Hi everyone - just an intro & quick quuestion

Postby AllyB » Wed Jun 13, 2007 2:36 pm

Hi there

I am a bit new to the site, but have been reading all the great info for a while - hope you don't mind if I join in? This site seems to be a fantastic font of information, and I admit to my ignorance! I am fortunate enough to have a husband, and am enjoying raising our two little boys, and am still working full time as I have all my life, though I am currently re-considering that.

Background: Have had ms for about 8 years relatively benignly, but it got a bit nasty last year - had three horrible relapse in 5 months and no longer completely recovered from them as I had in the past. I have been on Avonex since March 2007. MRI in Dec2006 revealed 3 active lesions - one in brain and two in neck (one big one mainly causing symptoms). Had another MRI a few days ago and brain and small lesion in neck no longer enhancing, big lesion in neck still enhancing. My neuro now thinks that I am fine and seems disappointed that I don't feel fine! I still have sympyoms in right arm and leg - mainly numbness, pain, poor motor co-ordination. I am also very fatigued on occasion...

Here's my question: am I in remission, and if so, should I be 100% fine? Why am i fatigued still, no energy on bad days, or if I do too much, lots of burning pain and cramps/spasms etc especialli in rt arm. Not sure if he is implying that it is in my head - is it common to still have symptoms and feel awful at times between relapses, or is there something else wrong?

Sorry to bug you guys, but would really benefit from your collective wisdom and experience - please tell me if I am going off my head? he even said that I was cured.....(sounds bizarre to me as I thought that there was no cure :?: )

Thanks a stack for any input or advise.
Last edited by AllyB on Sun Sep 13, 2009 3:28 pm, edited 1 time in total.
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Welcome, Ally

Postby lyndacarol » Wed Jun 13, 2007 5:17 pm

First, I welcome you to this site. We look forward to you joining in on all subjects. You are fortunate to have your supportive husband, boys, work, etc.

Second, thank you for your willingness to share the detaills of your situation.

Next, I speak as a nonscientist. My "qualifications" come only from my own experience with MS. I no longer improve 100% between exacerbations, but have residual symptoms at all times. I was flabbergasted that your physician would even imply that you were "cured!!!" I would be looking for another physician. Is there another, more informed on MS in your area?

Best wishes.
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Re: Welcome, Ally

Postby Lyon » Wed Jun 13, 2007 7:18 pm

lyndacarol wrote:I would be looking for another physician. Is there another, more informed on MS in your area?
Hi AllyB,
Welcome to the site. I don't have MS so I wasn't going to respond but I shared Lynda's thoughts when I read your post. If it's within your means to get another neuro, maybe you should consider it.
Bob
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Postby rasnet6 » Thu Jun 14, 2007 1:04 am

I can only answer with my personal experience with MS.

Like yourself I do normally completely recover in between times but when I have had a particulaly bad relapse it can take a while.

My last bad relapse left me with numb fingers for about 1 year after the major relapse had died down (this involved full body numbness, with incoordination.) Honestly I thought I would have numb fingers forever - but they did get better.

Dont give up hope

Rach
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Re: Hi everyone - just an intro & quick quuestion

Postby NHE » Thu Jun 14, 2007 3:41 am

AllyB wrote:Here's my question: am I in remission, and if so, should I be 100% fine? Why am i fatigued still, no energy on bad days, or if I do too much, lots of burning pain and cramps/spasms etc especialli in rt arm. Not sure if he is implying that it is in my head

Someone once suggested to me that my problems were all in my head. Since then I've decided that the next time anyone says that I'm going to reply... "Of course it is, that's where I keep my brain. Do you keep yours somewhere else?" 8O
- is it common to still have symptoms and feel awful at times between relapses, or is there something else wrong?

I've never really fully recovered from my last attack and it's been almost 8 years. My optic neuritis has cleared up (which took about a year or so until heat no longer brought on clouded vision) but I still get neuropathic pain in my foot nearly every day. This is worse when I'm tired and I can get burning sensations up and down my leg. I also get tired fairly easily and my balance isn't all that great. A normal part of the relapse remitting course of the disease is that sometimes we don't recover fully back to the place where we were before the attack. Moreover, I agree with the other replies to your post, if your current neurologist seems baffled that you're not 100% better (especially with a currently enhancing lesion) and cannot help you then you may need to find a new one.

NHE
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Postby AllyB » Thu Jun 14, 2007 4:19 am

Hi there

I would really like to thank you all for the replies and support - it is great to know that I am not alone in this.
I hear what you are saying about another neuro - there are a few in my area but none specialize in ms - I have a great oncologist (I wish she could treat this thing!) as I had cancer about 10 years ago and I am fortunate to be fine in that respect - I will have a chat with her, maybe she can get me another referral. I was reluctant to do this before as my current neuro seemed so confident that I was doubting myself more than him.
He also says that I don't need any liver function tests or full blood counts on the Avonex, but the package insert says different? My Oncologist has a lot of experience with interferons and when I told her I was starting the treatment, she warned me to get the tests periodically - who is right?

I also have very painfull electric shocks in my back and right arm when i move my neck forward and if I move too frequently or aggressively my arm becomes temporarily paralysed - just for a minute or two - and it ends with a severe non-voluntary pulling up and inward of my arm - my neuro says this is not from the ms and he cannot explain it - is anyone else familiar with this, or does it make sense? I know i am not imagining this - it is very scary and my biggest fear is that I will somehow cause it to be permanent!
This has turned out to be an out-pouring instead of a quick intro and question, but I guess once there is a crack in the dam....Apologies for that, but I can't tell you what a relief it is to speak to people who have such a wealth of experience and knowledge.
Once again, I thank you all, and look forward to getting to know you a bit better.

Ally
Al
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Re: Hi everyone - just an intro & quick quuestion

Postby NHE » Thu Jun 14, 2007 4:48 am

AllyB wrote:He also says that I don't need any liver function tests or full blood counts on the Avonex, but the package insert says different? My Oncologist has a lot of experience with interferons and when I told her I was starting the treatment, she warned me to get the tests periodically - who is right?

Liver function and CBC blood tests should be done about every 3 months or so when you're first starting Avonex. After the first year, you should probably have these tests once a year if you're doing OK. I've been on Avonex 7 years and I still get them done once a year.
I also have very painfull electric shocks in my back and right arm when i move my neck forward and if I move too frequently or aggressively my arm becomes temporarily paralysed - just for a minute or two - and it ends with a severe non-voluntary pulling up and inward of my arm - my neuro says this is not from the ms and he cannot explain it - is anyone else familiar with this, or does it make sense?

While I have never had symptoms such as these, I recall others posting on the forum that these symptoms are very common especially in people who have had lesions on their spinal chord.

NHE
Last edited by NHE on Mon Jun 18, 2007 2:30 pm, edited 1 time in total.
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Postby AllyB » Thu Jun 14, 2007 6:22 am

Thanks so much for all your help. I am sorry that this nasty disease has struck so many and hope that th efuture holds better treatment options for all. I look forward to participating more fully as I begin to address my ignorance!

Once again, thanks
A
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