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CIS?
I've just posted regarding my appointment with an MS specialist today. Basically, I was referred for an MRI & LP in Oct following an attack of optic neuritis. MRI shows scattered lesions in 'classic' areas of brain and LP shows o.banding. I have also had other symptoms since (numb or burning bottom lip, weakness, tremor, noise distortion & vibrating sensation in my ear) Anyway, I thought I was going to get a diagnosis today but the doc talked about a cis instead. I'm a bit confused! I feel in my heart this is MS and I said as much and the doc said if he was 'pushed' for a diagnosis he would say its more likely that I DO have MS but he can't give a clinically definate dx til I have a further relapse. I kind of feel like some sort of ticking time bomb now! He also talked of benign MS and said based on his experience and based on my symptoms, age etc, its possible that I have benign MS and might never have another relapse.
Anybody else in a similar boat???
Anybody else in a similar boat???
Now I am in the same situation - have lesions in cspine and brain total of 6 and 6 o bands and have only had one episode - only sx is foot drop and my dr dx'd me with MS and has me starting on DMD's I am going to a MS specialist next month but want to start meds asap since want to slow any progression - amazing how different Doctors look at similar test results and sx differently,
Hi, thanks for your response. I'm guessing you live in the USA from the 'mom' part of your username? Well, the doc said if I lived in the USA or if I had private health insurance, I would have been dx with MS!!! I don't know whether to be relieved at no dx or annoyed?! Which dmd have you chosen?
Ooops - I just asked about CIS in your other post and didn't see this one first. The use of DMDs is so controlled in other parts of the world compared to here in the US.
As for benign MS, there is no way of knowing if your MS isn't going to harm you or not until you are at the end of your life.
There are lots of folks in this boat with you - I wish I could paddle you ashore.
Lulu
As for benign MS, there is no way of knowing if your MS isn't going to harm you or not until you are at the end of your life.
There are lots of folks in this boat with you - I wish I could paddle you ashore.
Lulu
My story sounds very similar to yours. I am 34 years old and have had all sensory symptoms with the exception of one episode of TN. Mostly dizziness, weird sensations on my left side, tingling feet etc. I had an MRI showing 3 lesions and an LP with 5 unique O-bands. My neurologist told me this was a definite diagnosis of MS even without another relapse. Perhaps its because I am in the US, but I didn't realized more was needed for a definite dx. I started on a DMD 3 days after my LP results came back.
I am glad to hear that he said yours may be benign based on symptoms and age since we are so similar but I do wish you could start on a DMD rather that waiting for progression. I wish you the best of luck!
I am glad to hear that he said yours may be benign based on symptoms and age since we are so similar but I do wish you could start on a DMD rather that waiting for progression. I wish you the best of luck!
Yes, sounds like your situation is very similar to mine. I guess the NHS here is reluctuant to spend money on DMD's unless it really, really has to! When I asked him to explain why I had multiple lesions, he said the number of lesions is not really relevant! Then I asked about the bands in my csf and he said: "well your immune system was certainly fighting something within your nervous system at the time of the LP" and that was as far as he commented. It was all kind of leading nowhere and it was only as we were leaving his office that he said he thinks its more likely that I do have MS...now I'm a bit confused!
I wish you the best of luck too and do keep in touch!
I wish you the best of luck too and do keep in touch!
Hi Zoe,
It's horrible the meds are only available to treat CIS w/private healthcare in UK. It goes against all the recommendations, and years of findings that have shown great promise for treatment of CIS and the potential to slow or stop development of clinically definite MS with DMD treatment.
I'm so sorry to hear this. And, the meds should still be an option provided to you. I don't know the protocols of UK healthcare, but is there a 2nd opinion option of some sort?
-Shell
It's horrible the meds are only available to treat CIS w/private healthcare in UK. It goes against all the recommendations, and years of findings that have shown great promise for treatment of CIS and the potential to slow or stop development of clinically definite MS with DMD treatment.
I'm so sorry to hear this. And, the meds should still be an option provided to you. I don't know the protocols of UK healthcare, but is there a 2nd opinion option of some sort?
-Shell
Zoe - From a quick read from a couple of sources, I found this below, which makes me think they do have the ability to pick and choose CIS patients based on this:
From the 09 recommendations......
The Association of British Neurologists produced guidelines for the prescribing of interferon beta and glatiramer acetate in 2009( site 7 which I included a link for below).
The guidelines recommend that neurologists may consider prescribing these drugs in cases where the evidence for their effectiveness is less clear cut, after discussing the risks and the benefits of treatment with the patient. Use of disease modifying drugs after a clinically isolated syndrome is only recommended if there is also MRI evidence suggesting a high likelihood of developing MS.
Link:
http://www.abn.org.uk/abn/userfiles/file/ABN_MS_Guidelines_2009_Final(1).pdf
Excerpt:
1. In patients with relapsing remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis with superimposed relapses, Beta interferon has a consistent effect in reducing relapses (by about one third over two years)2,8-16. This may also apply to patients with a clinically
isolated syndrome in whom abnormal MRI indicates a high probability of subsequent conversion to clinically definite multiple sclerosis and those who subsequently meet the revised McDonald criteria for multiple sclerosis 17.
From the 09 recommendations......
The Association of British Neurologists produced guidelines for the prescribing of interferon beta and glatiramer acetate in 2009( site 7 which I included a link for below).
The guidelines recommend that neurologists may consider prescribing these drugs in cases where the evidence for their effectiveness is less clear cut, after discussing the risks and the benefits of treatment with the patient. Use of disease modifying drugs after a clinically isolated syndrome is only recommended if there is also MRI evidence suggesting a high likelihood of developing MS.
Link:
http://www.abn.org.uk/abn/userfiles/file/ABN_MS_Guidelines_2009_Final(1).pdf
Excerpt:
1. In patients with relapsing remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis with superimposed relapses, Beta interferon has a consistent effect in reducing relapses (by about one third over two years)2,8-16. This may also apply to patients with a clinically
isolated syndrome in whom abnormal MRI indicates a high probability of subsequent conversion to clinically definite multiple sclerosis and those who subsequently meet the revised McDonald criteria for multiple sclerosis 17.
No, there isn't really a second opinion option here but I think I'm gonna make an appointment with my gp and discuss things further. I don't really see the sense in subjecting me to a LP/MRI if they're not going to take any notice of the findings. I have an abnormal MRI, abnormal LP result and a multitude of weird symptoms (albeit none which disable me) I would have thought those were grounds to dx, wouldn't you?! I'm going to ask my gp if it's worth referring me to another neurologist. When I first saw a neuro right at the start of the eye troubles, he said DMD'S can only be given if a patient has clinically definate MS but he said the rules were likely to change soon to allow them to prescribe before the next relapse. All I want to know is whether I have MS or not? It sounds like I do, doesn't it?
CIS at a minimum. Especially since doc mentioned waiting on another attack, and the the LP, etc. It's ok to not be dx'd w/definite MS, just so long as you are offered treatment for CIS.
And, you are right, no need to repeat those 2 test already - unless doctor thought something else was at play, or they would looking for "new" evidence from a "new" MRI findings. Know what I mean?
Basically, if CIS - you should be treated (even on how they recommend above), and if not CIS, then name 'what' other possibilities they are looking for and 'why' they are following.
And, you are right, no need to repeat those 2 test already - unless doctor thought something else was at play, or they would looking for "new" evidence from a "new" MRI findings. Know what I mean?
Basically, if CIS - you should be treated (even on how they recommend above), and if not CIS, then name 'what' other possibilities they are looking for and 'why' they are following.
Hmmmmmmmm
Maybe this is why the 1.5 yr wait to be offered meds? I'm just guessing here........Pulled this CIS info from the above source too:
Treatment may also be offered to:
- patients within 12 months of a clinically significant, clinically isolated syndrome when MRI evidence predicts a high likelihood of recurrent episodes (ie development of MS)
- patients with only a single major relapse in the preceding two years, but combined with MRI evidence of continuing disease activity (ie they meet the revised McDonald criteria for MS)
- individuals younger than 18 years old with relapsing-remitting MS.
Maybe this is why the 1.5 yr wait to be offered meds? I'm just guessing here........Pulled this CIS info from the above source too:
Treatment may also be offered to:
- patients within 12 months of a clinically significant, clinically isolated syndrome when MRI evidence predicts a high likelihood of recurrent episodes (ie development of MS)
- patients with only a single major relapse in the preceding two years, but combined with MRI evidence of continuing disease activity (ie they meet the revised McDonald criteria for MS)
- individuals younger than 18 years old with relapsing-remitting MS.
I think the NHS has some different rules when they start DMDs. Most of the UK folks I have heard from seem to lead me to believe that the NHS doesn't treat CIS unless there is significant MRI lesion load. They go into "watch and wait" mode (as do many US neurologists.) The NHS also seems to also talk more about "benign MS" than you hear in the US.
The only reason I have any knowledge of this is because my partner (dual citizen - UK and US) and I have talked about relocating to the UK and entering into a Civil Partnership. It opens a whole new bag of worms.
Bob
The only reason I have any knowledge of this is because my partner (dual citizen - UK and US) and I have talked about relocating to the UK and entering into a Civil Partnership. It opens a whole new bag of worms.
Bob
Right. In the NHS NICE guidance, http://www.nice.org.uk/nicemedia/live/10930/29202/29202.pdf it says:
• If the person’s MS is mild with no relapses, then no treatment is needed.
• If the person has a relapse, steroid treatment may be needed.
• If a person has several relapses, medicines may be offered to try to reduce the frequency and severity of the relapses.
• Any specific symptoms caused by MS may need specific treatment.
There is a lot left up to the regional MS Specialists.
Bob
• If the person’s MS is mild with no relapses, then no treatment is needed.
• If the person has a relapse, steroid treatment may be needed.
• If a person has several relapses, medicines may be offered to try to reduce the frequency and severity of the relapses.
• Any specific symptoms caused by MS may need specific treatment.
There is a lot left up to the regional MS Specialists.
Bob
The NHS is constantly juggling the cost of these drugs vs the benefits. They tried last year or so to really backtrack on the use of DMDs through their risk sharing program claiming that the return on the cost was not justified and it couldn't be shown/proven that these drugs are worth it. I would have to go look for this again, but don't have the energy, so you might have to just take my word for that.
NHS kicks around that benign/mild MS label much more than other places. Most of the references we hear around here to benign MS come from folks on the NHS. The treatment of symptoms seems to be slow to come as well, even though that is recommended.
Getting to be seen at all by the MS specialist is a huge hurdle to clear from what I know.
As for the O-bands in your CSF, I'm thinking that once those are present, they don't go away. Once they are present, they will remain there. I'm not quite sure what your specialist was trying to say with his comment.
If there is anyway to get a referral to a different specialist for a second opinion, I would push for it. Good luck....
Lulu
NHS kicks around that benign/mild MS label much more than other places. Most of the references we hear around here to benign MS come from folks on the NHS. The treatment of symptoms seems to be slow to come as well, even though that is recommended.
Getting to be seen at all by the MS specialist is a huge hurdle to clear from what I know.
As for the O-bands in your CSF, I'm thinking that once those are present, they don't go away. Once they are present, they will remain there. I'm not quite sure what your specialist was trying to say with his comment.
If there is anyway to get a referral to a different specialist for a second opinion, I would push for it. Good luck....
Lulu
Thanks so much for all your comments. It's lovely to have some support because its difficult anybody else to understand. I've made a doctor's appointment for next thursday and am going to see if I can get a referral to a different specialist because I'm concerned that if it were simply a CIS then surely the symptoms would have calmed by now? I think the rules in the UK need to be clearer. I'm also nervous about our living arrangements because we live in a 1st floor flat I'm conscious that my legs are already wobbly from time to time.
Oh on a separate note, do any of you ever feel like you're coming down with something? A sort of flu-ey feeling with achey joints and chills etc? I get that frequently and wondered if CIS make you feel like that
Oh on a separate note, do any of you ever feel like you're coming down with something? A sort of flu-ey feeling with achey joints and chills etc? I get that frequently and wondered if CIS make you feel like that
You are very welcome. To answer your questions, no - simply CIS is nothing to shake a stick at. You can be in an exacerbation for months. The worse of mine was about 5.
Once you check out the links, you'll understand why they may not have prescribed the DMD at this time, however, another specialist may feel you fit the bill to be treated - I pray that happends for you.
The flu-like achey would not be related to MS, however, viruses and infection can bring about exacerbations for some.
Please be super careful on those steps since you are shakey. Make sure you are not alone if you can help it :)
Once you check out the links, you'll understand why they may not have prescribed the DMD at this time, however, another specialist may feel you fit the bill to be treated - I pray that happends for you.
The flu-like achey would not be related to MS, however, viruses and infection can bring about exacerbations for some.
Please be super careful on those steps since you are shakey. Make sure you are not alone if you can help it :)
As far as I know, I haven't got any virus or infection but roughly ever week I start feeling poorly, as if I'm getting a bad cold or something but then the symptoms mysteriously disappear and I'm back to normal. Very strange but then so is this whole situation! lol I do understand why they're not prescribing DMD's at this time. He said the 'average' person has one flare every 18 months so now we watch & wait.
The steps are a worry as I have a 9 month old who I have to carry down with the buggy. I just try and be super careful.
The steps are a worry as I have a 9 month old who I have to carry down with the buggy. I just try and be super careful.
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