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