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Posted: Fri Jul 04, 2008 11:06 am Post subject: Can I get your opinions please?
Hi everyone,
So I am completely confused and would like some opinions. In March, I got the flu and after the flu was done, I noticed that my left side wasn't working as well as my right. I ended up going to the ER, and was admitted. I had an MRI which showed a lesion on the right side of my brain. My neurologist in the hospital seemed to think this was a viral thing. I then had a follow up with the MS clinic (will talk about my tests in a minute) and my Dr. wants me to start treatment. Here is where I don't know what to do because I'm not sure that I HAVE MS. This is the evidence that I've got.
Lumbar puncture - clear, no anitbodies or elevated proteins
Follow up MRI (3 months after) no new or active lesions, the one that I had from before has actually shrunk.
Symptoms - None currently and I never had blurred vision, tingly anything. My symptom was that there seemed to be a slight delay from when I told my left arm and leg to do something, which made me feel a little unsteady and seemed to make me prone to typos.
Visually Evoked potential - Normal
Every blood test known to man - All normal (I think I had about 50 tests done, can't remember all of them).
So here is where I don't know what to do. I've read that MS generally presents as blurred vision or headaches, that 90% of MS patients show some sort of elevated protein in their spinal fluid and that after the first attack, new lesions are likely to form 3 months or so later. None of this applies to me.
I'm having a very hard time with the idea of starting a treatment for a desease I haven't been diagnosed with yet. That said, I want to be responsible. What I can't figure out is this - what is the chance that I DON'T have MS based on what I wrote and what is making my doctor so sure that I do?
Any advice would be appreciated. Thanks in advance.
Joined: Sep 23, 2007 Posts: 141 Location: Lexington, KY
Posted: Fri Jul 04, 2008 11:28 am Post subject:
Hi Emily,
I'm sorry you have to deal with this. Are you feeling better? Has your condition resolved itself? I am not a doctor so my opinion is just that - an opinion. If I were you I would not go on any standard treatment (the CRAB drugs). I would do nothing but continue with or adopt a healthy lifestyle. Take a multi-vitamin everyday also if you don't already. Make sure you aren't deficient in the B vitamins. With a clean lumbar puncture and only one lesion I would not even think that you have MS. Other conditions can cause brain lesions including Lyme disease which if caught early may be treatable by antibiotics.
I hope that you never develop MS and that this is an isolated incident and it never recurs.
Take care,
Marcia
PS If anyone out here disagrees with me they will pipe in. That's what's so nice about this site. We all have opinions and respect the differing ones. _________________ DX'd 08/2006, RRMS, brain lesions & spinal cord lesions, completed Tovaxin IIB trial, currently in the extension study group.
A friend of mine was hospitalized in Germany with a viral illness and this caused him a temporary paralysis. He didn't believe the diagnosis of MS when it was given to him as it was all so sudden. Also he inexplicably improved after the illness and was eventually able to prove that it was purely a viral illness that had affected the CNS, albeit temporarily. I would wait and see and touch wood! _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on capsaicin, scutellaria baicalensis, high dose curcumin
Thanks for your advice. It's sort of in line with my thinking. Yes, I'm 100% back to normal - running on the treadmill, typing fast.
I guess my other question is this - if it IS MS, what is the risk I run by not taking the meds now? I will fully commit to MRI's every 3 months (or more frequently) forever, but the injections seem so invasive. My doctor keeps telling me that I'm "not protected" without them, but then she says even if it is MS that I might not have another attack for 15 years. I just am so torn.
So, maybe if you can share what I stand to lose by holding off on the injections? I want to make an informed decision and if they didn't have the side effects and were maybe in pill form I think I'd feel differently.
Posted: Fri Jul 04, 2008 1:22 pm Post subject: Wait on treatment
Emily--I am not a scientist in ANY sense; but as one with the MS diagnosis for 16 years, I offer my opinion. I agree wholeheartedly with ssmme and gibbledygook. There is no effective treatment for this disease, there is nothing to be done to prevent it--researchers do not agree on what causes the disease!
I think you might be better off NOT assaulting your body with strong chemicals (pharmaceuticals).
Joined: Sep 23, 2007 Posts: 141 Location: Lexington, KY
Posted: Fri Jul 04, 2008 2:09 pm Post subject:
I totally agree with Lyndacarol. Until you receive an absolute diagnosis I would not take any of these FDA approved drugs and even with a diagnosis I would really research into how they can affect your body versus the benefits they can realistically provide.
Marcia _________________ DX'd 08/2006, RRMS, brain lesions & spinal cord lesions, completed Tovaxin IIB trial, currently in the extension study group.
Joined: Mar 26, 2005 Posts: 552 Location: Northamptonshire, England.
Posted: Sat Jul 05, 2008 8:51 am Post subject:
Hi Emily,
I completely agree with the others, (although of course even if we were all trained doctors, it would be deeply unethical to try and provide a diagnosis via e-mail): from the information you provided I don't think the criteria for MS have been met. If I were you I'd have another word with the doctor and see what the line of thinking is – is he thinking CIS, (Clinically Isolated Syndrome), and why does he disagree with the neurologist?
My first thought was viral encephalitis or some such, and I think a second opinion might be a good idea, _________________ Dom
Thank you so much for your replies. It's reassuring to hear that others feel similarly to me. I do NOT want to "wishful think" this away, but I also do not want to dive headfirst into treatment when, even as my doctor said, there is not enough evidence to diagnos me for MS.
My plan is to get the thorasic MRI as she suggested, and to get a second opinion based on all of my test results. My doctor is actually considered to be one of the best MS doctors in Chicago, but I can't help but question whether her advice is the best. It is one thing to tell me that my best precaution is to go on meds, but it's not her body that would go through the side effects, not to mention that I'm not excited about self injections. I sort of equate it to going through chemo because I might have cancer. If I HAVE cancer, you can bet I'm going to do whatever I can to fight it. Until that point, I'm going to keep being diligent about following up and taking care of myself.
I completely agree with everyone here. I don't participate often here, but your story sounded SO familiar... Right down to the city... I had to jump in.
In 2002, I, too, was admitted to the hospital after going to the ER for strange symptoms (legs going numb and tingly from knees down). I was released after a few days, told my MRI was suspicious, but the attending neurologist didn't want to do an LP and told me to follow up with the MS clinic in a few weeks. MY GP referred me to his neurologist of choice (also by one Chicago's top MS doctors), he was very eager to diagnose and start treatment based on only 1 attack and a suspicious MRI (3 lesions instead of the 1 you've got), but he felt that he needed another supporting clinical sign so he ordered LP and evoked potentials... sure enough, my LP came back with all the telltale MS elevations in proteins, bands, etc. If it had come back clean, I'm sure he would have held off on the diagnose and treatment. Instead, I got a diagnose and started treatment (at his urging but completely my choice).
Incidentally, I've since moved to another part of the country and have had two different neurologists agree that my neuro. in Chicago was absolutely correct. I've also had a second attack, so for me, the other shoe did drop and I accept that I've really got this thing.
I highly recommend getting a second opinion... I'll be happy to share my Chicago Doctor's name with you if that's appropriate here. Don't know all the rules.
Wow, thanks for the links. I read through all the stories. I'm more and more convinced that I will NOT be going on meds until a doctor tells me that all the MS criteria is met. This is a wonderful community. Even if I don't (fingers crossed) have MS, SOMETHING happened to me and I think I'll check back here frequently.
Alyssa - can you share the name of your doc, please? My friend is a physical therapist and recommended a couple of them that she knows, but any other suggestions are appreciated. If that's not "ok" to do here, no worries.
Joined: Sep 30, 2007 Posts: 100 Location: Charlotte, North Carolina
Posted: Sun Jul 06, 2008 12:36 pm Post subject:
Emily,
Here is the link to the National Multiple Sclerosis webpage that outlines the criteria for diagnosis. Maybe you can share this with the doctor that thinks you have MS.
"What is the Risk for a Person with a CIS of Developing MS?
Individuals who experience a CIS may or may not go on to develop multiple sclerosis. The challenge for the physician is to determine the likelihood that a person experiencing this type of demyelinating event is going to experience a second demyelinating event in the future, thereby meeting the criteria for a definite diagnosis of MS. Read more about the criteria for diagnosing MS.
High Risk: When the CIS is accompanied by MRI-detected brain lesions that are similar to those seen in MS, the person has a high risk of a second neurologic event, and therefore a diagnosis of clinically definite MS, within several years."
OK, so based on the above, I am high risk. HOWEVER, the site also goes on to talk about the 4 studies done to delay the onset of CDMS. In each, it appears that 45% go on to develop MS when given a placebo. This means, and I'm extrapolating here a bit I realize, that I have a 45% chance of having it. BUT, the site also says that VEP is a good way to confirm the disease, as is the spinal tap. Neither of these confirmed me, so I'm fairly certain at this point that I'm not going to take the meds "just in case".
I'm happy to share, Emily. I assume if we're violating rules, someone will delete my post.
I saw Dr. Barry Arnason at the University of Chicago. He's a big researcher and helped develop Betaseron, so he's got an interest in seeing patients go on medicines, but like I said, he wouldn't diagnose unless another clinical test looked suggestive.
Good luck. I think you're absolutely making the right decision.
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