sooty
04-03-2006, 11:19 AM
I received my LP results last week. I have oligoclonal bands!!! I have a cervical spine lesion, brisk reflexes and left sided symptoms - numbness, burning, stabbing pains, weakness, plus V tired, burning neck, cramps, heat problems, etc, etc. Based on this I have been told I have 'Mild MS' that it is in the early stages, I cannot be formally definate MS as I need another relapse - I was told this would be something completly separate, i.e. eye problems or problems with the right side, etc.
Without me saying anything, the neuro said "it's not stress and you're not imagining it, there is something there and the lesion on the spine is causing the symptoms" this was such a relief to hear this, because I felt that if the LP results showed nothing that would be it and I would be shelved!!
I am still in shock, even though I knew something was wrong and that it 'might be MS', after a while you start to doubt yourself, I've had comments such as 'I get tired too' 'Are you depressed' I do know it is difficult for others to understand, but it all adds to the doubt.
Anyway, my neuro is writing to my GP to get him to prescribe Modnafil for the tiredness, so a bit more waiting, but I am hoping this will help when I get it.
Now I know for sure what I am dealing with I feel I can get on with things a bit more.
Thank you for listening.
Sooty
Without me saying anything, the neuro said "it's not stress and you're not imagining it, there is something there and the lesion on the spine is causing the symptoms" this was such a relief to hear this, because I felt that if the LP results showed nothing that would be it and I would be shelved!!
I am still in shock, even though I knew something was wrong and that it 'might be MS', after a while you start to doubt yourself, I've had comments such as 'I get tired too' 'Are you depressed' I do know it is difficult for others to understand, but it all adds to the doubt.
Anyway, my neuro is writing to my GP to get him to prescribe Modnafil for the tiredness, so a bit more waiting, but I am hoping this will help when I get it.
Now I know for sure what I am dealing with I feel I can get on with things a bit more.
Thank you for listening.
Sooty
Sponsor
orngcrayon
04-03-2006, 02:16 PM
"Congratulations" isn't the right word, but I'm glad you got test results that were at least partially conclusive! It's never a good thing to be diagnosed with something like MS, but it can be a real relief when it's been hard to track down! Lets hope that next relapse is a ways away :)
duttin
04-03-2006, 09:55 PM
MS is scary,but I honestly feel not knowing what is happening to our bodies is worse than MS itself.I'm happy you a have a diagnosis.It will give you a peice of mind.
My LP came back with myelin basic protein high elevation,significant with demylination occuring.Neuro says non-specific,but could be causing the sensory problems.I'm having visual evoked potential and somasensory evoked potential done tomorrow.Hopefully it will tell something.I quess they are used when suspected micro-lesions are present,but don't show up on MRI's.
Keep ue updated
Prayers to You
Toni
My LP came back with myelin basic protein high elevation,significant with demylination occuring.Neuro says non-specific,but could be causing the sensory problems.I'm having visual evoked potential and somasensory evoked potential done tomorrow.Hopefully it will tell something.I quess they are used when suspected micro-lesions are present,but don't show up on MRI's.
Keep ue updated
Prayers to You
Toni
sooty
04-04-2006, 07:25 AM
You're right you do need a diagnosis because it is so stressful not knowing and that probably adds to the symptoms.
It's taken two years to get to this stage, from January has been the most stressful for me because it was the last stretch of waiting for results - worry is not a good thing for your health and wellbeing!!!
Nuffs3 - I hope your appointment goes well, from what I've read of your posts it sounds like you've had to push hard for tests, it seems to depend on where you live or who your Neuro is as to whether the docs follow through with the right tests and quick enough. Do you know how long before you get results?
Thanks for your replies.
My prayers are with you.
Sooty
It's taken two years to get to this stage, from January has been the most stressful for me because it was the last stretch of waiting for results - worry is not a good thing for your health and wellbeing!!!
Nuffs3 - I hope your appointment goes well, from what I've read of your posts it sounds like you've had to push hard for tests, it seems to depend on where you live or who your Neuro is as to whether the docs follow through with the right tests and quick enough. Do you know how long before you get results?
Thanks for your replies.
My prayers are with you.
Sooty
lilc
04-04-2006, 08:38 AM
Sooty, did they say anything about starting one of the CRABs? Early treatment does seem to be important.
sooty
04-04-2006, 10:12 AM
lilc
I was told that the side effects of the treatments available would outweigh the benefits at this stage, but I could get treatment for the symptoms.
Sooty
I was told that the side effects of the treatments available would outweigh the benefits at this stage, but I could get treatment for the symptoms.
Sooty
orngcrayon
04-04-2006, 02:36 PM
Well, everyone has to make treatment decisions that are right for them, but it sounds like your neurologist hasn't given you the option to start meds.
A lot of independent studies have shown that the earlier you start medication, the better you do in the long run. There's a new study out today about Avonex that says the same thing: http://www.biogenidec.com/site/019_0.html?pr_id=../news/BiogenIDECPR_122.htm
Many people (myself included) start disease-modifying drugs even before their diagnosis is confirmed by a second attack. Not everyone experiences side effects... and not all medications have the same side effects. Copaxone, for example, doesn't have the flu symptoms or depression and doesn't pose a threat to your kidneys and liver.
Anyway, I'm not saying you should go on therapy... maybe it's not worth it =) but I do hope you consider your options.
A lot of independent studies have shown that the earlier you start medication, the better you do in the long run. There's a new study out today about Avonex that says the same thing: http://www.biogenidec.com/site/019_0.html?pr_id=../news/BiogenIDECPR_122.htm
Many people (myself included) start disease-modifying drugs even before their diagnosis is confirmed by a second attack. Not everyone experiences side effects... and not all medications have the same side effects. Copaxone, for example, doesn't have the flu symptoms or depression and doesn't pose a threat to your kidneys and liver.
Anyway, I'm not saying you should go on therapy... maybe it's not worth it =) but I do hope you consider your options.
lilc
04-04-2006, 06:23 PM
Sooty, I have been told the same as orngcrayon. I've got "mild MS", didn't expect to go on meds but my neuro said the sooner the better. The meds don't help your sx, they are supposed to prevent or delay attacks.
I've been on Copaxone since November and I'm very glad. I actually think my cognitive function has improved.
Here's the thing: I only have one DOCUMENTED attack. But when I look back over the past 15 years I (and my neuro) suspect it wasn't the FIRST attack. It was the first thing that raised a flag to send me for an MRI is all.
Taking the meds is a very personal decision. (I chose Copaxone because I didn't want side effects. I don't have any, and it suits my lifestyle very nicely.) I'm not saying you absolutely should start them. You should also consider the diet changes that are working well for folks. But I don't think you got the whole story from your neuro, and you deserve all the facts.
I've been on Copaxone since November and I'm very glad. I actually think my cognitive function has improved.
Here's the thing: I only have one DOCUMENTED attack. But when I look back over the past 15 years I (and my neuro) suspect it wasn't the FIRST attack. It was the first thing that raised a flag to send me for an MRI is all.
Taking the meds is a very personal decision. (I chose Copaxone because I didn't want side effects. I don't have any, and it suits my lifestyle very nicely.) I'm not saying you absolutely should start them. You should also consider the diet changes that are working well for folks. But I don't think you got the whole story from your neuro, and you deserve all the facts.
Life4Fun
04-04-2006, 09:21 PM
I feel compelled to reply to Sooty's post, although I feel like it is a bit of a confession of a crazy decision I made a number of months ago.
But...he here goes. I was DX in October of 2004. It was a long time coming, although I didn't know it. I had an episode of ON that was misdiagnosed 18 years ago and a subsequent episode of numbness, another of ON a break out in hives and sensory numbness.
Anyway, when I was DX, the neuro that attended to me in the ER immediately picked up on the MS from the symptoms I presented with and then from the subsequent MRI. Without the lumbar puncture he asked that I strongly consider going on IV Solumedrol and Copaxone once the steroid treatment was done. I agreed, although I was worrid about the daily injections.
I went on Copaxone that December and saw a renowned MS specialist at George Washington University Hospital for follow up and during visits to both about 6 months later, the MRI's showed that some of the lesions had significantly decreased in size and none were active. The doctors were convinced it was the Copaxone doing it's job, and that while it takes time for Copaxone to cause improvements, it was a very good sign. I was in total remission and feeling great. No reactions to the Copaxone other than injection site lumps which I have no real problem with because it's not like I model in a bathing suit or skimpy clothes these days. :)
Now for the confession part -- I moved to Argentina a little over a year ago. As a result, the company I work for transfered me to the international health insurance plan. In the past when I've had this insurance, I didn't have much to claim and didn't realize that the coverage is less than what I have when I am living in the US. So... the cost of Copaxone is over twice as much as it is in the US -- $3500+ a month and I am only covered 80% rather than the $40 copay. That makes it almost $700 a month out of pocket for me. While I could manage to pay this for good health, I got peeved and made the decision to stop taking Copaxone on principle. Another word for Principle -- STUBBORN! That's me.
Bad move! Our seasons are reversed down here and I just lived through the hottest summer I remember since living in the Philippines and India. I was falling a lot. The 5th fall brought me to the hospital for xrays for what I still contend was a broken wrist, although the crummy xrays that were done here seemed to show that this was not the case. I was blaming it on the uneven sidewalks -- denial. I noticed numbing of my fingertips on my left hand whenever I was out walking around. And then in February the peak of summer, I woke up one Sunday and my vision was terribly blurred -- especially the reading vision -- which for me is a problem because I am in front of a computer at least 8 hours a day.
I got myself back to the US at the end of the month and the MRI showed new, enhancing lesions. I was put on Solumedrol again and this time the reversal of the symptoms didn't happen as quickly, but luckily a couple of weeks later I was back to almost "normal" vision with my bifocals. Whew! :bouncing:
So, I've been kicking myself for going off the Copaxone. I had the doctor write a prescription for 3 months so that I could purchase it in the US and carry it back here with me a couple of days ago. The out of pocket cost is a little over $300/month, but I've learned a lesson, and that is, that Copaxone is worth any price -- for me.
We are all different, but I thought I'd share my story. My neuro is very big on disease modifying drugs and unless it's coincidental, I am prone to believe him, big-time.
Now, that said, did anyone see the news about the combo of Lipitor and Copaxone for MS? It looks like it's going to go to clinical trials, but it looks like it may be a great breakthrough. My PCP is considering putting me on Lipitor for newly elevated Cholesterol levels, but until I move back to the US, it's out of the picture and I am working on it with diet and exercise. I am not one for dumping drugs into myself, but this one sounds promising enough to make me ask about it when I return.
But...he here goes. I was DX in October of 2004. It was a long time coming, although I didn't know it. I had an episode of ON that was misdiagnosed 18 years ago and a subsequent episode of numbness, another of ON a break out in hives and sensory numbness.
Anyway, when I was DX, the neuro that attended to me in the ER immediately picked up on the MS from the symptoms I presented with and then from the subsequent MRI. Without the lumbar puncture he asked that I strongly consider going on IV Solumedrol and Copaxone once the steroid treatment was done. I agreed, although I was worrid about the daily injections.
I went on Copaxone that December and saw a renowned MS specialist at George Washington University Hospital for follow up and during visits to both about 6 months later, the MRI's showed that some of the lesions had significantly decreased in size and none were active. The doctors were convinced it was the Copaxone doing it's job, and that while it takes time for Copaxone to cause improvements, it was a very good sign. I was in total remission and feeling great. No reactions to the Copaxone other than injection site lumps which I have no real problem with because it's not like I model in a bathing suit or skimpy clothes these days. :)
Now for the confession part -- I moved to Argentina a little over a year ago. As a result, the company I work for transfered me to the international health insurance plan. In the past when I've had this insurance, I didn't have much to claim and didn't realize that the coverage is less than what I have when I am living in the US. So... the cost of Copaxone is over twice as much as it is in the US -- $3500+ a month and I am only covered 80% rather than the $40 copay. That makes it almost $700 a month out of pocket for me. While I could manage to pay this for good health, I got peeved and made the decision to stop taking Copaxone on principle. Another word for Principle -- STUBBORN! That's me.
Bad move! Our seasons are reversed down here and I just lived through the hottest summer I remember since living in the Philippines and India. I was falling a lot. The 5th fall brought me to the hospital for xrays for what I still contend was a broken wrist, although the crummy xrays that were done here seemed to show that this was not the case. I was blaming it on the uneven sidewalks -- denial. I noticed numbing of my fingertips on my left hand whenever I was out walking around. And then in February the peak of summer, I woke up one Sunday and my vision was terribly blurred -- especially the reading vision -- which for me is a problem because I am in front of a computer at least 8 hours a day.
I got myself back to the US at the end of the month and the MRI showed new, enhancing lesions. I was put on Solumedrol again and this time the reversal of the symptoms didn't happen as quickly, but luckily a couple of weeks later I was back to almost "normal" vision with my bifocals. Whew! :bouncing:
So, I've been kicking myself for going off the Copaxone. I had the doctor write a prescription for 3 months so that I could purchase it in the US and carry it back here with me a couple of days ago. The out of pocket cost is a little over $300/month, but I've learned a lesson, and that is, that Copaxone is worth any price -- for me.
We are all different, but I thought I'd share my story. My neuro is very big on disease modifying drugs and unless it's coincidental, I am prone to believe him, big-time.
Now, that said, did anyone see the news about the combo of Lipitor and Copaxone for MS? It looks like it's going to go to clinical trials, but it looks like it may be a great breakthrough. My PCP is considering putting me on Lipitor for newly elevated Cholesterol levels, but until I move back to the US, it's out of the picture and I am working on it with diet and exercise. I am not one for dumping drugs into myself, but this one sounds promising enough to make me ask about it when I return.
duttin
04-04-2006, 10:22 PM
Sooty,
Had the VEP and SSEP.Won't know results for a week.These test were done by the Neuromuscular Specialist at the Cleveland Clinic.MS is not her specialty.She works with ALS and Myopathy patients.She knows something is going on,but not of a muscular nature.
The SSEP was quite painful,it made an EMG/NCS a picnic.But once he made my right ankle go numb it was a breeze.The Tech was puzzled,I failed to tell him the ankle has no reflexes.If they are good they figure it out.I have had DRs. leave bruises on that ankle trying to get a reflex.That was the aftermath of an attack a year ago.
Staying positive.
Prayers to you
Toni
Had the VEP and SSEP.Won't know results for a week.These test were done by the Neuromuscular Specialist at the Cleveland Clinic.MS is not her specialty.She works with ALS and Myopathy patients.She knows something is going on,but not of a muscular nature.
The SSEP was quite painful,it made an EMG/NCS a picnic.But once he made my right ankle go numb it was a breeze.The Tech was puzzled,I failed to tell him the ankle has no reflexes.If they are good they figure it out.I have had DRs. leave bruises on that ankle trying to get a reflex.That was the aftermath of an attack a year ago.
Staying positive.
Prayers to you
Toni
sooty
04-05-2006, 06:20 AM
Thank you for your replies, I am wondering if not starting the meds early is because I am in the UK, although we have to pay for our prescriptions it sounds like this would be minimal in comparison to the cost of the drugs, I think (not sure) most of it would be covered by the NHS rather than by an insurance company, the Neuro did say it's nothing to do with cost - but I'm starting to wonder now!! I think I will start looking into this further!!
Nuffs3 hope results come through quickly.
Sooty
Nuffs3 hope results come through quickly.
Sooty