Why avonex? I know that there are three interferrons. Whay do some docs push one over the others. My two neuros said to use betaseron or rebif, but not avonex. Why?
Hello all,
I saw my second neurologist. surprisingly his assessment was completely different from first one.
First he said that i have no new lesions and even one of my lesions has been shrank(first one said one has grown).
he said no enhancement can be detected(the only common point with first neurologist).
He said according to latest guidelines while I do not fill McDonald's criteria but since I had optic neuritis and 4 lesions at time of optic neuritis, It is recommended that I start Avonex and after one year I have to get another MRI then decide what to do next.
He gave me time to decide if I want to start avonex.
He prescribed Atorvastatin in addition to vitamins but I did a small research about Atorvastatin and find out there are some contradictions about usefulness of Atorvastatin. Of course the contradiction relates to use of Atorvastatin in combination of interferons and he prescribed Atorvastatin in combination with vitamins but I have not decided whether I use it or not.
1->http://www.ncbi.nlm.nih.gov/pubmed/18398457
2->http://www.ncbi.nlm.nih.gov/pubmed/18525027
As I said he prescribed Atorvastatin without any interferons and let me to decide whether I want to to start them but still I'm not sure whether I want to take Atorvastatin( I did not test my cholesterol for some time but a few years ago it was high ~ 270mg/dl if I recall correctly).
I trust second neurologist more than first. first one was talking with his mobile phone and prescribing drugs for one of his patients in hospital while he was inspecting my MRI ! I think the reason for this contradiction is in first MRI lesions are most obvious in sagittal views while in latest MRI lesions are only obvious in transverse views and that might have caused some confusion. but second neurologist even wrote down address of each lesion in his report and their changes.
Even though first neurologist assessed my situation worse than second one but he did not recommend interferon.
I think I have to inquire more before I decide!
Be well,
Engineer,
My goodness, Engineer75! It will prove to be most interesting to see what the other two neurologists will say. Please see neuro#2 and #3 before having an LP. Those are usually unnecessary for an MS diagnosis.
I do have one suggestion: try to have the same imaging facility do each MRI. If you are having multiple MRI's and the machines are different strengths, it will only make things more confusing. At least make sure each facility has the same strength machine. Also make sure they use MS Protocol. Ask them when you make your appointment. If they say'" Uh duh, yeah" get verification that they do. It makes all the difference in the world. Comparison readings should be done too. Shop around if you have to but make sure your MRI's are done on a Tesla3.
Once, I was misled and had an MRI on a 1.5Tesla with MS Protocol. The entire report was 3 sentences long, including the comparison. A good report will be a couple of paragraphs long.
What is a double GAD? Two doses of dye during the same MRI?
Good luck to you. I hope you get a two out of three consensus.
Hi Engineer,
Hope you don't mind all these purple flowers all over you!!!!!!! ha/ha
I have to reiterate what was said a little - I'm sorry (incase you don't want more hens in the hen house). If so, warning you in advance to disregard....
Ok -so they are not "lit up" but Dr's review says you have more. Why didn't the Dr. ask the MRI facility to do a comparision study? That would be my next move. I'd want a neuroradiologist looking at the imaging side-by-side to confirm more i.e., changes, etc.
My other thoughts are that since you were dx'd with CIS without LP results, you do not need an LP. DMDs should have been recommended and of course it's a personal choice.
All the best to you in the next 2 days and with the famous one in the future. I truly hope the evidence is wrapped up nicely for you. Glad to hear too that you have seen improvements.
-shell
This emphasis on enhancing lesions is totally wrong. It's actually relatively rare for lesions to enhance, because they have to be less than a few weeks old for that to happen. Given all the bureaucracy and time delays in seeing neuros and scheduling MRIs, it's no wonder that gad often shows relatively little that the first round didn't show.
All this doesn't mean that there aren't more lesions than before. There often are. But they don't 'light up' if they're not brand new. Not a big deal. Any neuro who insists on seeing enhancing lesions before making a diagnosis is a neuro who should be history. Also, any neuro who won't diagnose without an abnormal LP also belongs in the scrap heap of history.
To me it sounds as if you have RRMS and are fortunate to be in a remission now. I've been on this forum more than a year and a half, and I wish I had a dollar for every post about waiting and seeing, only to have the member show up months later with worse symptoms than the last round. If you meet the criteria for MS now, you should be on a DMD now. There's nothing to be gained by waiting, and there's potentially a lot to be lost.
Best of luck,
ess
I forgot to say that he also said that if my MRI in 6 months showed more lesions then I have to get spinal tap test. thankfully at present I have no symptoms, my eye sight almost completely has backed and in consciousness I do not have any involuntary movements.
be well
Engineer
Hello Lulu, how are you? I hope you are fine.
The only diagnosis that I have for certain is optic neuritis, and one of my three neurologists also diagnosed me with CIS. all of my various blood tests were normal.
Yes I'm also concerned about having new lesions and I will try to discuss it with my next neurologist in more detail. maybe those new lesions are related to the involuntary movements that I had after optic neuritis(3 months ago).I have not decided what I should do but I think I will take opinions of all three neurologists and then make a decision(if I felt it is not enough I can see even more neurologists and MS specialists).
Today my neurologist emphasized that none of lesions are enhance lesions but he said that in next MRI (in 6 months) it would be better if I take double contrast GAD.
Can I say WTF in a language that you would understand? I don't understand how you could have new plaques and they would not be considered active, they might not be new (under 30 days) that they would enhance, but if you are gaining new lesions, then your disease (whatever it is) certainly is active.
Refresh us here, do you have a diagnosis at all - it seems to me you are still waiting, right?
Keep us informed, ok? I'm intrigued by this chat about lesions and non-active plaques.
be well,
Lulu