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Bad news from my neuro today....
Oct 02, 2009 07:57PM
- 7 comments
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Went to an appointment with my neuro today.. we were supposed to make the final decisions and get me started on Rebif. He asked me how I have been doing since I got out of the hospital a few weeks ago, and I told him that my numbness has gotten progressively worse as the Prednisone tapers down, and that I was starting to have some new symptoms, most bothersome being the terrible muscle spasms in my left arm... they're so bad they draw my hand up, and I can't even lift my arm.
With that news, he said that he's not sure now that I have RRMS... that he thinks it may possibly be PPMS, and he wants to consult with some of his colleagues before he makes a decision. He thinks that maybe since my MS seems to be so aggressive, that he may want to immediately start me on Tysabri, or possibly send me to cleveland clinic to see someone who is more specialized in this area.
He's worried about the placement of the one large lesion on my cspine, as it is right at the top of my spinal cord... and that if that lesion were to grow, it could instantly paralyze me from the neck down. He said to wait until Wednesday, and that he'd call me after he had time to do some consulting.
5 days is a looonnnggg time to wait for something like this.. I'm making myself sick with worry. But, on a happy note, he gave me an rx of Xanax, saying that it would help with my trembling and would probably help with the spasms. When a spasm started this evening, I immediately took one, and within 30 mins the spasm was over!! Before, taking nothing for it, they'd last for 3-4 hours.
So, I guess I've got to take the bad with the good, and try to stay positive!
Rhi
With that news, he said that he's not sure now that I have RRMS... that he thinks it may possibly be PPMS, and he wants to consult with some of his colleagues before he makes a decision. He thinks that maybe since my MS seems to be so aggressive, that he may want to immediately start me on Tysabri, or possibly send me to cleveland clinic to see someone who is more specialized in this area.
He's worried about the placement of the one large lesion on my cspine, as it is right at the top of my spinal cord... and that if that lesion were to grow, it could instantly paralyze me from the neck down. He said to wait until Wednesday, and that he'd call me after he had time to do some consulting.
5 days is a looonnnggg time to wait for something like this.. I'm making myself sick with worry. But, on a happy note, he gave me an rx of Xanax, saying that it would help with my trembling and would probably help with the spasms. When a spasm started this evening, I immediately took one, and within 30 mins the spasm was over!! Before, taking nothing for it, they'd last for 3-4 hours.
So, I guess I've got to take the bad with the good, and try to stay positive!
Rhi
Rhi, oh my, this is not the kind of worry we want you to be sitting on for the next few days but I'm glad you have a neuro who is willing to consult with others. The whole point of the dmd's is to treat the disease as aggressively as possible with the most appropriate therapy. There is little out there, as you know, that will work with PPMS. So I will hold out the hope that he is wrong, and that your RRMS is just misbehaving in a radical way.
Xanax for spasms? Great that it works for you - anything that helps with giving relief is so welcome. If you take this Xanax regularly, be sure to read about tapering off of it if that becomes necessary.
If you need to vent, question or just talk this out, you know all of us are here to walk with you on this journey. We have recently had others dx'd with PPMS (Wobbly and Shermay) and you may want to PM them about their experiences in the future. In the meantime I hope you have lots of ways to keep yourself preoccupied until Wednesday.
Lots of hugs to you,
Lulu
Xanax for spasms? Great that it works for you - anything that helps with giving relief is so welcome. If you take this Xanax regularly, be sure to read about tapering off of it if that becomes necessary.
If you need to vent, question or just talk this out, you know all of us are here to walk with you on this journey. We have recently had others dx'd with PPMS (Wobbly and Shermay) and you may want to PM them about their experiences in the future. In the meantime I hope you have lots of ways to keep yourself preoccupied until Wednesday.
Lots of hugs to you,
Lulu
Rhi,
I just read your post, i don't have much advice since this really calls for prayers and I do that quite well..
stay positive,
meg
I just read your post, i don't have much advice since this really calls for prayers and I do that quite well..
stay positive,
meg
Lulu and Meg-
Thanks for the support, thoughts, and prayers! Right now, those are the only things I can do.
I really am trying to be positive.. I gave myself yesterday to cry and feel sorry for myself, but now I'm making myself buck up and deal with it. Things are what they are, and I truly believe that if I let this beat me, it will; my only choice is to fight. I'm a strong person, and it's going to take a lot more than this to do me in =))
I'm so very grateful for the community here, and all the support you all offer. You are a blessing =))
And to Lulu- I'm only taking the Xanax when I get a muscle spasm.. not something I want to get addicted to. Thanks for your concern there! I was worried about that too.
Rhi
Thanks for the support, thoughts, and prayers! Right now, those are the only things I can do.
I really am trying to be positive.. I gave myself yesterday to cry and feel sorry for myself, but now I'm making myself buck up and deal with it. Things are what they are, and I truly believe that if I let this beat me, it will; my only choice is to fight. I'm a strong person, and it's going to take a lot more than this to do me in =))
I'm so very grateful for the community here, and all the support you all offer. You are a blessing =))
And to Lulu- I'm only taking the Xanax when I get a muscle spasm.. not something I want to get addicted to. Thanks for your concern there! I was worried about that too.
Rhi
Rhi, I have to ditto meg on this one. We will pray, knowing that God has things in store for you too wonderful to imagine. We're here if you need us, too.
Hi Rhi
Laura just pm me. I'm Debs aka shermay. We appear to be to be travelling down the same road - a bumpy ride that it is too. I had an MRI in August, that showed a major lesion on my T10 spinal column, which is low down. I had an email from my Neuro to say that if i didn't start treatment on Tysabri, then I would be a paraplegic in a few months time. So I can really relate to what you are going through right now believe me. DX 9 years ago.
I too have taken time out to think about this, and to think about the ramifications of it all. I am fortunate to have a Son who is a Dr of Chemistry, and had found out all about Tysabri. He has access to papers that we the general public are denied, and he has sent me a detailed research paper on it.
I can relate to the numbness, it's terrible. It's like your muscles are asleep, and no matter how hard I (we) try it just will not go away. You are in good hands with your Neuro consulting other Neuro's to see what the best course of action for you will be.
I am seeking a second opinion, to see what another Neuro will say. My Neuro wants to 'attack' this disease with the best drug that he knows, which is Tysabri - I have had part or the testing done to see if I am a good candidate for Tysabri, I now have to have a lung scan and TB test. The only thing that is bothering him is that I have a low white blood cell count, it's borderline. You have to have a good white blood cell count to fight off any infection.
It's like being stuck between 2 hard places. To wait 5 days?? It will soon pass, but at the moment I'm sure it seems like a lifetime. Stick with Xanax, if it helps your spasms then take it. I take valium on a regular basis, more to keep me sane as well as the spasms :/
Please Pm me anytime you want, I'll be here for you.
Sending hugs and best wishes your way. I hope you have good news on Wednesday, you will be in prayers tonight.
Debs XXXXXX
Laura just pm me. I'm Debs aka shermay. We appear to be to be travelling down the same road - a bumpy ride that it is too. I had an MRI in August, that showed a major lesion on my T10 spinal column, which is low down. I had an email from my Neuro to say that if i didn't start treatment on Tysabri, then I would be a paraplegic in a few months time. So I can really relate to what you are going through right now believe me. DX 9 years ago.
I too have taken time out to think about this, and to think about the ramifications of it all. I am fortunate to have a Son who is a Dr of Chemistry, and had found out all about Tysabri. He has access to papers that we the general public are denied, and he has sent me a detailed research paper on it.
I can relate to the numbness, it's terrible. It's like your muscles are asleep, and no matter how hard I (we) try it just will not go away. You are in good hands with your Neuro consulting other Neuro's to see what the best course of action for you will be.
I am seeking a second opinion, to see what another Neuro will say. My Neuro wants to 'attack' this disease with the best drug that he knows, which is Tysabri - I have had part or the testing done to see if I am a good candidate for Tysabri, I now have to have a lung scan and TB test. The only thing that is bothering him is that I have a low white blood cell count, it's borderline. You have to have a good white blood cell count to fight off any infection.
It's like being stuck between 2 hard places. To wait 5 days?? It will soon pass, but at the moment I'm sure it seems like a lifetime. Stick with Xanax, if it helps your spasms then take it. I take valium on a regular basis, more to keep me sane as well as the spasms :/
Please Pm me anytime you want, I'll be here for you.
Sending hugs and best wishes your way. I hope you have good news on Wednesday, you will be in prayers tonight.
Debs XXXXXX
Hi Rhi,
I only mention the xanax withdrawal because my DH was on it when he had his open heart surgery. No one bothered to wean him off the stuff, and by day 5 he was in a full blown anxiety attack thanks to the withdrawal. I warn everyone about coming off these drugs - knowledge of side effects is essential.
Take Debs up on her offer - she is going through the same as you. Although we wouldn't wish this on anyone, misery really does love company and its easier to face when you know you are not alone.
my best,
Lulu
I only mention the xanax withdrawal because my DH was on it when he had his open heart surgery. No one bothered to wean him off the stuff, and by day 5 he was in a full blown anxiety attack thanks to the withdrawal. I warn everyone about coming off these drugs - knowledge of side effects is essential.
Take Debs up on her offer - she is going through the same as you. Although we wouldn't wish this on anyone, misery really does love company and its easier to face when you know you are not alone.
my best,
Lulu
Hi Rhi
I just got Dx with PPMS after quite along time in Limboland... they dx me because I wasn't having any remission time in the past few years and getting worse. I'm still not sure how I feel about the Dx and wonder if it's the right one for me??
take care and pm me .. we can chat and let us know how thing go..take care
wobbly
I just got Dx with PPMS after quite along time in Limboland... they dx me because I wasn't having any remission time in the past few years and getting worse. I'm still not sure how I feel about the Dx and wonder if it's the right one for me??
take care and pm me .. we can chat and let us know how thing go..take care
wobbly
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