CIS Limbo??

[Britt123]

Hi everyone,

I was diagnosed with Clinically isolated syndrome in September because I had numbness in my hands and feet and stomach and Le hermittes sign with a corresponding lesion on my MRI. I asked my nuero if he recommends starting treatment but he keeps saying its "50/50". I have multiple lesions as well. My problem is that I had severe Le hermittes sign this past spring along will persistent intense buzzing in my whole body that lasted for weeks. He said it doesn't "count" because I never had an MRI to find a lesion. CLEARLY this last relapse was not an isolated experience! I need some advice on the decision to start treatment. I hate this 50/50 business and I know I wont get a definite diagnosed until another relapse!

[malaholic]

Hi Britt123-

I'm sorry you are going through this. I know there are mixed opinions out there on whether to start DMD treatment with a CIS Dx. Has your doctor done all the tests to rule out MS mimickers? Do the locations of your lesions match a typical MS presentation? Has the frequency or severity of your past possible attacks escalated? Are there a lot of lesions? I am not a doctor but based on my own experience the more 'yes' answers you have to those questions, the more I'd lean toward starting treatment.

My first neuro was a neuro-opthamologist; I was referred to her because I was having double vision. After the MRIs and tests to rule out things like Lyme, etc., she gave me the same CIS diagnosis, and was also kind of 50/50 on whether to treat; she left it up to me. She said if I opted not to treat, then we would monitor more frequently, with an MRI every 3 months or so. I think for MS diagnosis if there is new lesion activity on the MRI that counts for the 'dissemination in time' criteria even if your symptoms aren't relapsing. So, if you elect not to start treatment perhaps you could ask about frequency of monitoring to catch any future activity early on?

For me, after learning that it could be MS, I then sought a 2nd opinion from an MS specialist in my area. She looked more thoroughly at my medical history from my PCP, who had noted many times over the years that I complained of periods of dizziness, extreme fatigue, etc. that remained unexplained. Based on my history which suggested prior, smaller attacks, and based on my MRI which shows a lesion pattern typical for MS, and based on all the mimicker tests being normal, she diagnosed MS. Since she is certain it is MS and since these episodes have been escalating in frequency and severity, she strongly advised treatment. She feels in general that if the MRI looks like MS then it doesn't help patients to hold off on treatment even without that past history, though again there are other doctors with valid reasons for feeling differently.

Ultimately I decided to start Copaxone which seemed to be the 'safest' option to me, but I will move to a different med if it doesn't work.

I am hoping for you that somehow you have something less serious than MS, but it is good for you to research treatment options in the event that it is.

How are you doing since your September episode? I hope those symptoms have subsided. Keep us posted here on what you learn and decide!

[SNOOPY]

Hi Britt123 and welcome to MSWorld.

My problem is that I had severe Le hermittes sign this past spring

There is no symptom which is unique to Multiple Sclerosis even LHermittes. When LHermittes is related to MS it is due to a Lesion(s) on the cervical spinal cord.

Have you had a MRI of the cervical spinal cord? If not you might ask your Neurologist to do so.

Not all cases of CIS turn out to be MS.

Some Neurologist treat Clinically Isolated Syndrome (CIS) and some are more comfortable waiting to see if CIS IS MS. Some patients want to treat CIS and some want to wait.

Best wishes.

[Jennagain]

Maybe not....

I had what was considered a CIS eight years ago and told it was very likely MS (had brain lesions). The neuro at the time considered putting me on the meds, but then changed her mind.

I went along fine for 8 years until this second "attack" in September. Now I have no lesions and MS is questionable.

If I had been on the meds it would have been assumed the meds gave me 8 years of no relapses, never mind the fact I may have not even needed them.

[Britt123]

I have had the cervical MRI which showed a lesion on my spine which my neuro said he expected to find. I still have been feeling the jolts down my spine every couple weeks at random times. I have three lesions and multiple areas of "hypertensities". I am going to get a second opinion which may not be for a while because I am looking to go to an MS specialist and there are not many in my area. I have been experiencing dizziness and like a sort of brain fog? I thought it could be stress from school but I am beginning to suspect it may be MS related as well. I appreciate all of the advice from everyone and concern. I am so glad I joined this forum!

[sherm]

Have you had evoked potentials done as well as a spinal tap? I've had 3 EPs and the tap and 3 MRIs as well as a ton of different blood tests to rule out all the mimics. I'm assuming that all this information will hopefully lead to a diagnosis that might be a bit more informed than just "50/50", but that may not end up being the case anyway. It probably couldn't hurt for them to do those EPs and other tests if you haven't had them done yet. At least I'm hoping I didn't get all this stuff done for no reason, ha.

[hsmaldo]

I started treatment when I was given the CIS diagnosis. My neuro said he wanted to be aggressive with it and after the tests that he ran, (LP -6 o-bands, Evoked Potential-normal, c-spine, t-spine and brain MRIs) I decided to go ahead and go on the DMD.

My take on it is this: The idea of DMD is to delay further lesions from occurring for as long as possible. They won't prevent them, but the more lesions you have earlier on, the higher the possibility of disability earlier on.

You can always go OFF a DMD, but you can't go back in time and start taking it earlier.

I ended up seeing a MS Specialist last month and getting the clinical diagnosis of MS. And I'm glad I've been on the meds for over a year now.

Everyone is different. I agree with sherm--have you done the LP and EP yet? These are just more pieces of the puzzle that may help you and your dr make a more informed decision about starting on the DMDs.

Good luck with whatever you choose. I know that CIS is a very hard and difficult place to be--neither here nor there and just "waiting for the other shoe to drop." Hang in there!