I wanted to see if i could get some thoughts on this issue. I'm not looking for anyone to give me a medical opinion, i'm just trying to figure out if i'm in denial and everyone around me is just agreeing with me to make me feel better.
I was diagnosed with possible MS in May after having ON. The MRI (done with and w/out contrast) showed that I have 3 lesions. My neuro says 2 of them are very old and inconsistent and 1 is newer and consistent with MS. There was no active demyelation on the MRI (i think i'm speaking in the right context).
I have never had any sign or symptom of MS in the past. I have tried, over and over, to think back to something i might have dismissed and i come up empty every time. Besides the fact that my eye is still healing from the ON, i just don't feel like there is anything wrong. I take extra hot showers all the time to see if they have any affect on me and they don't.
So, my question is, is it truly possible that there is a chance that I could never have CDMS? I know its longshot and I really don't believe that there is no way I will ever get it, but i feel like there's a chance - however small it may be. Thoughts? Opinions?
The reason i ask is that I feel like everyone around is so afraid to upset me since all of this, that they are agreeing with me just to make me feel better.
Did you have an LP with oligoclonal bands? Does your dx satisfy revised McDonald criteria. 2 events with dissemination in space and time and all that. There are a lot more things than MS that can cause lesions including demyelination. I am in same denial boat you are but with many old lesions, positive LP but nothing enhancing. I had 2 MRIs 8 months apart and no new lesions. My neuro was ready to put me on Rebiff and I said let me wait for another relapse or new lesions or any new clinical presentation first. She said its best to get ahead of this. I said I am 56 and if I do have MS then something has been protecting me all these years which I believe is my outdoor lifestyle and gluten free, low fat, low sugar, low dairy diet. Like you I am in denial and still not sure it isn't Lyme and my low sugar diet is keeping it in check. I been bit by at least 100 deer ticks in my life but Lyme test always neg. BTW my Dad had MS and bother has it also. When I got my Diplopia last fall for 2 weeks I had came off my diet and was eating lots of sugar and some gluten.
Please this is only my opinion but seems to me you need more evidence
Last edited by cg50in; 09-01-2011 at 08:02 PM.
The Following User Says Thank You to cg50in For This Useful Post: KingBaxter (09-01-2011)
Thank you cg50in. I had an LP and all results came back normal. Test for lyme came back negative also. As far as i know, i have never been bitten by any kind of tick. The things that gave me the possible MS dx are the ON and the lesions. My dr was very clear that it is only possible dx, but he recommended also that i start a DMD and gave me information on copaxone, avonex and rebif. He also said its best to start as early as possible. I chose rebif and have been taking it almost 3 mos.
So technically, no, i do not meet the McDonald criteria and is why the dx is possible MS. The only person in my entire family that has MS is a cousin of my mother. I'm not sure whether anyone in his family has it, but I don't think so.
I am 34 so I feel like i need to take the medication and hope that it helps prevent any future attacks...if i will ever get any anyway. But i'm always thinking do i really need to be injecting this foreign substance in my body, and will it wind up doing more harm than good in the long run??
I keep asking my husband if he thinks i'm in denial because i believe that there is a chance that i don't have it. He agrees with me, but i feel like he is so careful with what he says around me these days because he doesn't want to upset me. And i think he realizes i am in much better spirit on my denial days.
ON can be MS or just ON. A positive LP does not mean MS. 15% of MSers who have had LPs have negative results.
I think that you are staying aware of your problems and you seem to be on the right path. In Japan ON is considered a separate disease until additional symptoms present. As long as you recognize your ON, you are not in denial IMO....
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
The Following User Says Thank You to MSJayhawk For This Useful Post: KingBaxter (09-02-2011)
As always I love reading your posts. Ive seen so many people in the past ask the same questions you are asking. Now, I have a question for you. Why do you think you do not technically meet the McDonald Criteria? And, which criteria are you reading? It was updated just this past spring....
It is true that ON can be JUST ON and nothing more. My brother gets ON all the time, hes had it 4 or 5 times in the past few years.....he has absolutely NO signs of MS....and is tested regularly thanks to me. On the other hand, I have a negative LP and negative for Lymes, Ive been tested 3 times all from Igenex the "Lymes Lab' of most Infectious Disease docs.... I have lesions and have had ON and I have a positive dx for MS...
My advice to you. Go get another opinion. Take your labs/ MRIs, and History and Physical to an independent physician of your choosing, but MAKE SURE he or she is a MS specialist and go get another opinon.
Now, as for the injecting this into your body thing....you know Im a huge Rebif fan. Last week I had a small problem injecting, first time in 5 years. Tonight, another problem...Im seeing my Neuro first thing in the AM to discuss this problem. All the sudden, Im having reactions to something Ive been banging for 5 years....this isnt normal and it isnt supposed to be happening. Talk about me being shocked! Ive been quiet on the boards most of the past week simply due to uncertainty about a few things about my own disease. Im sure I have MS; but Im not entirely sure that some of the things my body is trying to tell me arent because of the Interferon Im injecting all the sudden. Ill see my Neuro in the am, but Im also going to see my MS specialist on Tuesday....and Ive already lined up a second MS specialist to call if there is a tie which needs to be broken!
Its okay to question things....but thinking that your family is "yessing" you isnt gong to solve anything.....go get some more medical advice...
RRMS- dx 05
The Following User Says Thank You to MSNik For This Useful Post: KingBaxter (09-02-2011)
Nikki - first i'm sorry that you're having difficulty with the rebif all of a sudden. i hope everything goes well at your appt this morning. I'm really starting to get worried that i'm causing my body more harm in the long run with this stuff. I'm definitely not an anti-med person and i know every med has potential side effects, but it really is worrying me more and more.
The reason my dr told me that i do not have DCMS is that i only had the one event (CIS) and i only have one consistent lesion. He did reference the revised criteria from this year. I have an appt set with an MS specialist the end of this month - i've put it off long enough.
Basically, i think that there is at least 80% chance that i will go on to have CDMS, and I know 80% is huge in medical terms, but there is that small chance that i will never have CDMS.
Hi ya King.
I understand both your fear and your frustration. I am in healthcare myself, so all of this is second nature to me; however I didnt think I was going to be dealing with it myself...
Today's appointment was interesting. Not sure exactly what to do with the info and I am going to be seeing my MS specilalist next week. My regular Neuro is HIGHLY skilled with MS patients and I use him for just about everything MS related. He has patients on every single drug, except Gilenya- he stopped using that drug after the first case of PML related death was discovered...(fortunately not his patient). He is very much against using Gilenya until there is more efficacy reported...its "too new".
However he isnt against letting me try to be on it...if I want to try it. Im not your average patient, since I do have the medical background and more understanding then most people have, he thinks Id be a good candidate to try it. That scares me initself. I push myself thru everything- ignore every little thing that happens.....am I really in touch enough to actually notice when im not feeling normal? What is normal?
My MS specialist is a crapshoot. I dont like him, although he is well respected in the NY/NJ area and very much involved in the MS society and clinical trials. He is going to tell me his opinion on Gilenya and provide me more info...
My regular Neuro wants me to stay on Rebif, but cut down to 22 mcgs for a month before trying to increase it again. Im definately having some serious site reactions....after 5 years of injecting....and the fact that Im only 110 lbs and have literally no body fat- my skin is now rejecting the drug. If you could see what is going on, Youd never inject again. Dont think this happens to too many people, but it is happening to me, and I am really scared. Not only that , but its keeping me awake at night, itching, burning pain...rather than treat THAT symtom I want to eliminate the cause...so, I have alot of decision making to do.
thanks for inquiring, and dont let my story scare you...the good news is after 5+ years, not one new lesion and not one excaberation...that, and only that, is reason enough to stay on Rebif in my book.....however, why is my skin doing what its doing? When I get that answer, I will make my decision...if its as simple as reducing the drug in my body for a month and starting over, Ill try that first, but I DO want more info on Gilenya. I read a report today that there are 13,000 people in the US on it...thats interesting.
RRMS- dx 05
The following user gives a hug of support to MSNik: KingBaxter (09-02-2011)
Nikki - sheesh!! I'm so sorry that you are having this problem. That is really, really scary. As i think you know, i'm on 22 mcg and staying there for now. I spoke with my neuro about this several times and he thinks since i am still doing well on the 22, no need to take more medication than i need. I spoke with him about the prescribing info and he still thought I should stay at 22. He said we can readdress at any time i'd like or if i have a relapse (hopefully not!). I hope it works out for you as you are doing so well for so long on rebif.
I would love to know more about Gilenya myself, but what i have read about it, it scares me terribly. The rebif is scary enough right now for me. I just hope that there is a safe, effective pill that we can all take one day - tomorrow wouldn't be soon enough!! Man...i never thought i would rather inject myself than take a pill because its scarier. But i think if i was unable to take rebif one day for any reason, Gilenya would be my next choice. I don't think either avonex or copaxone are right for me.
Good luck with whatever you decide, and if you decide on Gilenya, please keep posted.
Sam, Avonex is identical drug to Rebif just given differently.
Copaxone, im deathly allergic to, that was my first drug, and it lasted 3 shots...
Gilenya- they just released a new prospectus on it...its not even online yet...the new info is alot less scarier and more promising, however the side effedts DO exist...and some of my other non-MS problems, and the fact that Im in hospitals dealing with patients every day, make it scary for me..
Ill keep you posted, thanks for offering your thoughts. It means alot.
I know how you feel Sam about injecting stuff. I started on copaxone 2 months ago and although I have not had any major reactions I do have very very itchy, swollen red lumps for 2 days post injection. I have been told I have to wait 6-9 months as well to know if it is working for me. The thing is though I have had MS for about 15 years and got diagnosed in Jan 09. I have always known I had it but it was a shock getting offically diagnosed. I chose not to take any DMD's after the dx but got relapse after relapse and my 2 relapses (one a very bad cognitive one which literally stopped me doing anything and a bad case of ON gave me no choice but to try the drugs.....So far no relapses (its only been 2 months though) but still having eye troubles and feeling rubbish!
Nikki: sorry to hear of your troubles Are your skin reactions similar to the copaxone type reactions? Is it localised? or are you having hives come up all over your body? Maybe a good anti histamine might help dampen the reactions?
I hate so much injecting this foreign substance into my body. Today was a shot day so i feel even stronger about it on those days. I leave everything out in my bathroom so when i wake up, i won't forget. Every time i see that stuff on the vanity i curse it so bad.
I know revif and avonex are the same drug. I really looked over and over the info on both drugs and decided rebif was better for me. The need is smaller. Plus, I don't think i could inject the needle into my muscle. The rebif needle goes right under the skin and thats far enough for me. Also, i read that the side effects on avonex are worse since you basically take one larger dose??? I have read people said you have to give up a day of your life every week.
I didnt choose copaxone because its every day and i don't want to have red, bumpy, itchy injection sites all the time. The big red spots from rebif are bad enough. I have read copaxone doesn't give you side effects or potentially mess up your liver, so it's definitely a trade off.
Sorry for your dilemma. I'm going to try to tell you a story and keep it short as possible OK. (Please remember I'm a chick OK) I have been on my own since I was 12, yes 12 don't ask- and have been working outside ever since, with the exception of some time during pregnacies (had all three by 20)(again don't ask LOL). I began in a junk yard with cars and at 21 began a career in Paving which later brought me to Sr Roadway Inspector, Construction Material Lab Manager, whatever for roadways (FL and NC) (NC 5 yrs) I have always had a PCP, began w/ a Neurologist in 05, Pain Management in 08. Economy has had me in a bind about working but I have had regular scans due to severe migraines (which are seperate from MS). Well in May I just began falling. Well I'm one of those hard headed people thinking it was nothing. it began on a Wednesday by Friday I'm thinking maybe I had a stroke. I didn't go to the ER until the following Tuesday after talking to my Neurologist. (Yes I'm that hard headed). I was there for 12 days, I can't even tell you all of the tests, heart,blood, scans the big one was open head surgery. Yes, they did a brain biopsy and sent it out to Johns Hopkins (I'm in FL) to confirm the diagnosis. I was released after the biopsy and had to wait on the results and as they suspected it was MS. My lesions were current, not only that I have a lot of brain damage that I know was not there less than a year ago. I also see my Neurologist every 3 months, which includes in office checks for signs of MS. I said all of that because we don't know exactly what each small lesion is affecting. Each of us will likely have different symptoms. I had no clue, I thought I'd be building these roads, and until a couple of months ago I could handle going outside in this heat. Now I just hope that the Betaseron will assist with some of the symptoms I am now experiencing. Problems I never had before May. Starting on meds early may be a plus for you, offering you an opportunity not to experience as many symptoms. Be happy. Always ask questions. Never leave your care solely on the Dr. OH, before I forget you're not alone. We all can bounce with the bumps
The following user gives a hug of support to iluv: KingBaxter (09-07-2011)