Hello folks

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Hello folks

Postby biddi4 » Tue Sep 18, 2012 5:02 am

Just like to say hello.
Was diagnosed yesterday with secondary progressive MS.

I'm a 48 yo male, and my symptoms started a year and half ago (probably longer).
On 3/28/11 I noticed that the bottom of my right foot felt numb and tingly. Then in a few minutes it felt like my entire right side was tingly. Scalp, lips, tounge, arm etc.

So off to the ER. All imaging was normal but they still though STROKE. 2 days in the hosp, sent home with PT and bp meds. After 6 weeks of PT, still felt the same, plus as soon as I got home from the hospital, it was impossible to go without napping throuhout the day.

So in May, I followed up with a neurologist for my "stroke". She said I didn't have a stroke, or if I did, it was too small to see. She thought my symptoms could have been caused by some disc degeneration in my back. So I continued on thinking I should start feeling better soon.

Then in August it seemed one day that everything got worse again. Just like when it began. Went to the ER again. This time the doc didn't panic, but instead asked me if I've ever been checked for MS. I said, no, so he discharged me with an MS workup with my neurologist. She found bi lateral clonus, hyperreflxia, abnormal sensations in lower R leg. So, a new MRI, bloodwork, spinal tap, emg.
MRI: normal
Bloodwork: normal
CSF: showed O-bands, high protein, high csf index
EMG: carpal tunnel, one neuropothy in right leg.

This was last Nov. She wouldn't consider MS without lesions. So she sent me to a fibro specialist...ya, I know....
But he thought maybe I had fibro so he gave me gabapenton. Didn't do anything except put me to sleep, and that was on one pill. I was supposed to increase to several a day. So I stopped that nonsense. This was this past March.

So figuring I would just wait till something changed, either for the better or for the worse, I continued on.
Then in May, I found a new neuro. She did all the same things, with all the same results, except the EMG now showed signs of demeylination in both legs.

So she said lets treat for MS to see how you do. I'm confortable with this, I just wonder if the med, Copaxone, will help my current symptoms, or just prevent worsening. Also, might I worsen anyway?

I tried to get an answer for two years, no that I have one, I'm confused.

Thoughts?
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Re: Hello folks

Postby want2bike » Tue Sep 18, 2012 6:23 am

Here is a link for copaxone so you can see what others have to say about the drug. Dr. Mcdougall sites a study in England showing the drugs do not work.

http://www.askapatient.com/viewrating.a ... PerPage=60

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.nytimes.com/2012/07/18/healt ... .html?_r=3
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Re: Hello folks

Postby euphoniaa » Wed Sep 19, 2012 3:31 am

biddi4 wrote:Just like to say hello.
Was diagnosed yesterday with secondary progressive MS.


MRI: normal
Bloodwork: normal
CSF: showed O-bands, high protein, high csf index
EMG: carpal tunnel, one neuropothy in right leg.

Then in May, I found a new neuro. She did all the same things, with all the same results, except the EMG now showed signs of demeylination in both legs.

So she said lets treat for MS to see how you do. I'm confortable with this, I just wonder if the med, Copaxone, will help my current symptoms, or just prevent worsening. Also, might I worsen anyway?

I tried to get an answer for two years, no that I have one, I'm confused.

Thoughts?

Hi, biddi4,

I'm sorry you're going through all this. Getting an MS diagnosis can be a long, drawn out process sometimes, and you pretty much have to depend on your doctors for that, but there's a lot of great information here at ThisIsMS, so I hope you'll wander around the many forums here and read. Most questions have been asked & answered many times - often from different perspectives - so keep in mind that there are NO absolute facts about MS either. :smile: We all have different opinions.

I do have a couple of comments in reply to your questions, however. First, EMGs are not done to verify MS, but to rule out other damage to your peripheral nerves. MS is a disease of the Central Nervous System (brain, spinal cord, optic nerve), while ALL other nerves in our bodies are part of our Peripheral Nervous System or PNS.

The carpal tunnel and peripheral neuropathy in your legs are basically not indicative of MS, but show PNS damage instead. I've been personally diagnosed with definite MS (lots of brain lesions), and also a hereditary peripheral neuropathy that mostly affects my legs & arms. Your doctors should be looking into something like that as well.

Here's a link to a thread where I tell my diagnosis story and show my brain MRIs. general-discussion-f1/topic16335.html
Those lesion-cluttered brain pics are a good example of why docs hesitate to diagnose MS when there are no lesions showing at all.

As for Copaxone - or any of the other mainstream meds like the interferons - they are not designed to make you feel better or to address any MS symptoms. They won't make you well. They won't cure MS. Studies show that there is a chance that they may help reduce the frequency of relapses. But not for everyone who takes them. There's no way to tell how well you will do on one of the meds. In fact, sadly, there's no way to even tell whether they've been of any benefit to a particular patient. They are not designed to "prevent worsening."

Now a question to you - what made your doctor diagnose you with Secondary Progressive MS? The meds are generally not expected to be effective for SPMS. With your history of peripheral neuropathy and lack of brain lesions, I would suggest that you don't 'fall in love' with the MS diagnosis :smile: and keep searching for answers.

Although O-bands can be signs of MS, that appears to be the only MS test that you've passed. O-bands are found in other diseases also. And most neurological conditions of both the CNS & PNS share similar symptoms.

I was diagnosed (with MS & HNPP) by a physiatrist, who is a doc skilled in neuro, muscular, skeletal issues and would have a broader focus than a neuro only. Here's my latest physiatrist experience thread: general-discussion-f1/topic20442.html

Even though I have MS, I can attribute most of my neuro-type symptoms to my peripheral neuropathy, arthritis, back degeneration (proven with MRIs), joint degeneration, and just plain age. :smile:

Keep searching for answers and I hope you find relief from your symptoms!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Hello folks

Postby biddi4 » Wed Sep 19, 2012 5:57 am

euphoniaa wrote:
biddi4 wrote:Just like to say hello.
Was diagnosed yesterday with secondary progressive MS.


MRI: normal
Bloodwork: normal
CSF: showed O-bands, high protein, high csf index
EMG: carpal tunnel, one neuropothy in right leg.

Then in May, I found a new neuro. She did all the same things, with all the same results, except the EMG now showed signs of demeylination in both legs.

So she said lets treat for MS to see how you do. I'm confortable with this, I just wonder if the med, Copaxone, will help my current symptoms, or just prevent worsening. Also, might I worsen anyway?

I tried to get an answer for two years, no that I have one, I'm confused.

Thoughts?

Hi, biddi4,

I'm sorry you're going through all this. Getting an MS diagnosis can be a long, drawn out process sometimes, and you pretty much have to depend on your doctors for that, but there's a lot of great information here at ThisIsMS, so I hope you'll wander around the many forums here and read. Most questions have been asked & answered many times - often from different perspectives - so keep in mind that there are NO absolute facts about MS either. :smile: We all have different opinions.

I do have a couple of comments in reply to your questions, however. First, EMGs are not done to verify MS, but to rule out other damage to your peripheral nerves. MS is a disease of the Central Nervous System (brain, spinal cord, optic nerve), while ALL other nerves in our bodies are part of our Peripheral Nervous System or PNS.

The carpal tunnel and peripheral neuropathy in your legs are basically not indicative of MS, but show PNS damage instead. I've been personally diagnosed with definite MS (lots of brain lesions), and also a hereditary peripheral neuropathy that mostly affects my legs & arms. Your doctors should be looking into something like that as well.

Here's a link to a thread where I tell my diagnosis story and show my brain MRIs. general-discussion-f1/topic16335.html
Those lesion-cluttered brain pics are a good example of why docs hesitate to diagnose MS when there are no lesions showing at all.

As for Copaxone - or any of the other mainstream meds like the interferons - they are not designed to make you feel better or to address any MS symptoms. They won't make you well. They won't cure MS. Studies show that there is a chance that they may help reduce the frequency of relapses. But not for everyone who takes them. There's no way to tell how well you will do on one of the meds. In fact, sadly, there's no way to even tell whether they've been of any benefit to a particular patient. They are not designed to "prevent worsening."

Now a question to you - what made your doctor diagnose you with Secondary Progressive MS? The meds are generally not expected to be effective for SPMS. With your history of peripheral neuropathy and lack of brain lesions, I would suggest that you don't 'fall in love' with the MS diagnosis :smile: and keep searching for answers.

Although O-bands can be signs of MS, that appears to be the only MS test that you've passed. O-bands are found in other diseases also. And most neurological conditions of both the CNS & PNS share similar symptoms.

I was diagnosed (with MS & HNPP) by a physiatrist, who is a doc skilled in neuro, muscular, skeletal issues and would have a broader focus than a neuro only. Here's my latest physiatrist experience thread: general-discussion-f1/topic20442.html

Even though I have MS, I can attribute most of my neuro-type symptoms to my peripheral neuropathy, arthritis, back degeneration (proven with MRIs), joint degeneration, and just plain age. :smile:

Keep searching for answers and I hope you find relief from your symptoms!


Thanks for the reply. Wow, I'm confused. Why then are those meds used if they don't make anyone feel better, or prevent worsening? That's mind boggling to me.

She actually decsribed it as possible chronic progressive ms, and wanted to see if I have any improvement with the med.

Lots of people say that O-bands are found in other conditions, but not many people offer a list of those conditions. I understand the O-band thing, but the few conditions I have found that cause O-bands have been ruled out for me.

I had a neurosurgeon look at my spinal mri and NOT be too impressed, but if my neuropothies are caused by mild ddd, or slight bulging, then why hasn't someone addressed those things and offered a remedy? The neurosurgeon actually recommended that I be worked up for MS.

Also, like I've told all my docs, if it was ONLY tingling and a patch or two of numbness here and there, I could live with that. But it's the foggy, hungover, not clear headed feeling and the fatigue that goes along with the other symptoms that I can't stand.

My neuro also included her physical exam of me for her diagnosis. Abnormal sensations, poor balance, possible h'ermettes sign, clonus, hyperreflexia.

Like I told her as well, it's not MS I want, but so far nothing else seems to fit.

Haha, after re-reading this post, it sounds like I'm yelling. I'm not. I appreciate the help, and welcome more. I'm just frustrated, worried, and just want to feel better.
Peace
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Re: Hello folks

Postby euphoniaa » Wed Sep 19, 2012 7:31 am

biddi4 wrote:Thanks for the reply. Wow, I'm confused. Why then are those meds used if they don't make anyone feel better, or prevent worsening? That's mind boggling to me.

She actually decsribed it as possible chronic progressive ms, and wanted to see if I have any improvement with the med.

Lots of people say that O-bands are found in other conditions, but not many people offer a list of those conditions. I understand the O-band thing, but the few conditions I have found that cause O-bands have been ruled out for me.

My neuro also included her physical exam of me for her diagnosis. Abnormal sensations, poor balance, possible h'ermettes sign, clonus, hyperreflexia.

Like I told her as well, it's not MS I want, but so far nothing else seems to fit.

Haha, after re-reading this post, it sounds like I'm yelling. I'm not. I appreciate the help, and welcome more. I'm just frustrated, worried, and just want to feel better.
Peace


Yeah, biddi4, although it's possible to see some sort of benefit from the meds (not guaranteed, of course), they were not developed to improve symptoms at all, although some patients seem to do well on them and report they feel better. It's frustrating to me that so often patients are not told what to expect, and look forward to a diagnosis assuming that they'll FINALLY get relief and improvement from using general MS meds. That's not the way MS works. The symptoms (and side effects) usually need to be treated separately.

I have to say that some of your other symptoms above are common to MS, but, like I said, none of them are exclusive to MS - not even Lhermitte's. MS is usually a diagnosis of exclusion, or ruling out everything else (except in MY case, where my dx was almost instant :smile: ).

And a comment about this quote from you:
biddi4 wrote:I had a neurosurgeon look at my spinal mri and NOT be too impressed, but if my neuropothies are caused by mild ddd, or slight bulging, then why hasn't someone addressed those things and offered a remedy? The neurosurgeon actually recommended that I be worked up for MS.


Peripheral neuropathies are problems with your peripheral nerves and not your spine, they can be caused by many, many reasons, and they can mimic MS symptoms. The disc bulges are NOT peripheral neuropathies, but can press on your spine (part of the CNS), which can also mimic MS symptoms.

I recently had new EMGs of my leg, along with MRIs of my C-spine and Lumbar Spine. Also got an x-ray of my knee. My physiatrist just shook his head and said I have multiple pinched nerves (causing neuropathy) in my leg, and I also have degeneration throughout my spine and my knee (causing pain and walking distress on my right, non-MS side). There's not much he can do for any of them except encourage me to continue with my usual healthy diet & exercise, and then order PT again in the future if needed. None of the bones are in enough disrepair for surgery. Yet. :smile:

I always suggest that the best thing you can do - no matter whether you take meds or not, no matter whether you have MS or not - is to optimize your general health in the meantime with a healthy diet and exercise. I'm convinced that's how I've kept myself relatively mobile and active after all these years.

I hope someone stops by with a list of diseases that mimic MS and ones that also show O-bands. No time for me to search for those.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Hello folks

Postby biddi4 » Wed Sep 19, 2012 7:38 am

Yeah, biddi4, although it's possible to see some sort of benefit from the meds (not guaranteed, of course), they were not developed to improve symptoms at all, although some patients seem to do well on them and report they feel better. It's frustrating to me that so often patients are not told what to expect, and look forward to a diagnosis assuming that they'll FINALLY get relief and improvement from using general MS meds. That's not the way MS works. The symptoms (and side effects) usually need to be treated separately.

I have to say that some of your other symptoms above are common to MS, but, like I said, none of them are exclusive to MS - not even Lhermitte's. MS is usually a diagnosis of exclusion, or ruling out everything else (except in MY case, where my dx was almost instant :smile: ).

And a comment about this quote from you:
biddi4 wrote:I had a neurosurgeon look at my spinal mri and NOT be too impressed, but if my neuropothies are caused by mild ddd, or slight bulging, then why hasn't someone addressed those things and offered a remedy? The neurosurgeon actually recommended that I be worked up for MS.


Peripheral neuropathies are problems with your peripheral nerves and not your spine, they can be caused by many, many reasons, and they can mimic MS symptoms. The disc bulges are NOT peripheral neuropathies, but can press on your spine (part of the CNS), which can also mimic MS symptoms.

I recently had new EMGs of my leg, along with MRIs of my C-spine and Lumbar Spine. Also got an x-ray of my knee. My physiatrist just shook his head and said I have multiple pinched nerves (causing neuropathy) in my leg, and I also have degeneration throughout my spine and my knee (causing pain and walking distress on my right, non-MS side). There's not much he can do for any of them except encourage me to continue with my usual healthy diet & exercise, and then order PT again in the future if needed. None of the bones are in enough disrepair for surgery. Yet. :smile:

I always suggest that the best thing you can do - no matter whether you take meds or not, no matter whether you have MS or not - is to optimize your general health in the meantime with a healthy diet and exercise. I'm convinced that's how I've kept myself relatively mobile and active after all these years.

I hope someone stops by with a list of diseases that mimic MS and ones that also show O-bands. No time for me to search for those.


Lots of good info there. Thanks. Especially about my expectations ans the peripheral neuropathy
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Re: Hello folks

Postby want2bike » Wed Sep 19, 2012 8:08 am

Why do they prescribe the meds? Check out the cost and that should be the answer. If you want something which has a chance of working go to a holistic doctor. For sure get on a healthy diet. The body can heal itself if you give it the proper nutrition. Your health is the result of what you have put in your body. Check out the diet section. Many have seen good results using the diet.

http://www.youtube.com/watch?v=8JF7TcPs ... ure=relmfu

http://www.youtube.com/watch?v=THddIqz9 ... re=related

http://www.youtube.com/watch?v=5g6EPHLF ... re=related
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