clinically isolated syndrome or PPMS?

[anon07072023]

Hi everyone,
This is the first time I've posted a question.
Dec 2009 I presented with severe left leg spasms & cramps, weakness, numb / tingling feet, & urinary incontinence. I couldn't get into the neurology office until 3 months later. And a subsequent MRI showed that I had a lesion in my thoracic spine. So, they initially thought I might have partial transverse myelitis.
Then 3 months later I presented with optic neuritis. Although, my brain MRI, 3 months after my ON symptoms, was clean (at least according to the report).
I had a lumbar puncture about a month ago and it was negative for o-bands.
However, my lower extremity symptoms have progressed now for over a year. My symptoms have never gone away. They haven't gotten better and they haven't even stayed the same. I have more severe symptoms and I have new symptoms in my lower extremities. For example, groin / private area spasms & numbness and now I can hardly even walk a mile without getting totally numb feet and starting to walk very stiff legged. My legs feel very stiff, weak, and heavy. I have many more symptoms but I want to draw this out.
Now they are saying I probably have clinically isolated syndrome. But, to me it sounds more like PPMS since the symptoms are getting worse, etc.
Does anyone have any thoughts on this?  I'd really appreciate anything that anyone might have to add.
Thank you.

[anon07072023]

Thanks Quix. I never even heard of Rocky Mountain MS Center until you mentioned it. I was able to call them today to get in to see Dr. Miravalle - in June, and they do accept Cigna. A lot better than seeing my neuro - right now he's about 6 months out for appts with him. Apparently Colo Sprgs has a neurologist MS specialist drought. And Rocky Mtn MS Center was very apologetic with me having to wait until JUNE, I can't get in to see my neuro until OCT. Thanks again for your help.  =)

[anon07072023]

I guess at first I thought my symptoms were pretty stable, but looking back they must have slowly been progressing. I guess these increased symptoms didn't really start standing out to me until a few months ago. It started out as severe left leg spasms & cramps, weakness, numb / tingling feet, & urinary incontinence.

Now, today, it has progressed to hardly being able to walk a mile, when I used to hike all day. When returning from about a mile or so walk around our house, I look like Frankenstein trying to walk up our driveway hill (hills absolutely are the worst for me).
And, afterwards, it feels like my legs are shaking / vibrating like crazy, like I just worked out for hrs.

I also have to go to the bathroom about 16x a day - & they've put me on Vesicare now.
Although, I still do get the spastic urgency / incontinence. After sitting my knee feels so tight. And I get spasms now in my feet, groin, private area, and numbness / tingling in these places, too. It feels like my left hamstring muscle is going to rip itself off my leg - it feels so tight & spastic (I'm happy that Baclofen is helping this).

[Quixotic1]

Hi, Kelly, I have to rethink my answer.  I'll try to get to this, but have commitments today.

Quix

[anon07072023]

Thank you everyone for welcoming me to the community/forum & responding to my questons. Yes, I have actually been lurking for quite a while but only signed up a couple months ago.
Sorry, I said the date that this all started wrong - it was Dec 2008, not Dec 2009. So, I've had progressive symptoms for 1 yr & 4 months now. Then I saw the neuro for the 1st time in Apr 2009 (the MS neuro specialists take FOREVER to get in to see here). My brain, cervical, and thoracic MRIs were in May. The optic neuritis presented in Feb 2009 & I went to see an eye doctor about it. It was an optometrist, & not an opthalmologist. He did several tests on me & seemed to think it was ON. And, yes, my symptoms were unilateral - only in my left eye.
The lesion on my spine is between T9-T10 & it is 3cm long & 4mm wide. I've had additional MRIs in Oct on my brain & thoracic. And also have had different lab work done - all coming out good. ie neuromyelitis optica auto antibodies, ANA, ana reflexive profile, rheumatoid factor, B12, Folate, Vitamin D hydroxy-25 level, TSH, ESR, c-reative protein, HLA B-27, HIV,CBC, etc.
My LP was sent to the Mayo Clinic. I have the report, but don't see anything on it regarding IgG Index or white cells. But according to my neuro, "Everything came back absolutely fine." TNCC CSF and RBC CSF are marked as <1.0
Since it takes forever to schedule appts with my neuro, most of my contact has been with his PA. I think he probably still considers this an isolated case of partial transverse myelitis. But, I haven't had the opportunity to discuss with him all my progressive symptoms. Yet, now his PA said that she thought it is a CIS. When I questioned her, she said it's because I had an attack - the ON. I don't understand - what about all my lower extremity problems, too (isn't that an attack)? It's really frustrating.
They started me on Skelaxin, but that didn't work for my left leg spasticity & tightness. So his PA switched me to Tizanidine, & that made me feel sick & kind of feverish. Now I'm on Baclofen & it's working great.
I'm not sure if I can go to Denver and have my insur. cover it - I think it may be considered out of network - I'm not sure. Sorry, I'm trying not to write a book here...
Thanks again everyone. :-)  

[Wobbly]

Hi there, I just wanted  to welcome you to the forum.  I think the other friends before my post have given you all the answers that I could think of and more..

but I wanted to welcome you and say I hope you find some answers and get some sort of meds to help with symptoms.

take care and stay in touch
wobbly
dx

[Quixotic1]

Hi, and welcome to posting!  I guess you have been lurking for a couple months?  I can see why you are confused about what it happening to you.

A lot of neurologists use CIS rather indiscriminately when a person appears to have the beginnings of MS or just doesn't have enough evidence to make a diagnosis.  The experts in the field would rather have this term used only to indicate the person that has had only one "attack" or episode of new symptoms.  You appear to have had two attacks.  The only catch here is that you never had anything resembling a remission from the first attack of Left leg spasms, weakness, paresthesias in your legs and urinary incontinence.  (You must be miserable!)  Instead you have had an ongoing progression.

Then you had the ON, which appearing was diagnosed clinically - from the exam and typical features.  Was the ON on one side or bilateral?

So, you don't fit CIS either.  Is your neurologist considering this whole period between December and now a single attack?

I am curious about the thoracic spine lesion.  Where is it.  Does it extend more than a couple vertebrae?  Is a longer than a single vertebra?  Did you also have an MRI of your cervical spine?

Also, on the results of the spinal tap - did you have any elevation of the white cells?  Was the IgG Index normal?

I ask those questions because you are in a gray zone.

One thought is that these were actually two separate attacks, with evidence of damage in two separate parts of the Central Nervous System.  In that case you fultfill the criteria for a diagnosis of Definite MS, except that there is no stabilization of symptoms between the attacks, thus there was no remission.  So it does look like just an ongoing attack.

Another thought, since you have had only spinal and optic symptoms and evidence of damage.  this brings up the consideration of NeuroMyelitis Optica ( also known as Devic's Disease) which is very rare, but as it's  name suggests attacks just the spine and the optic nerve.  In this, the spinal lesion tends to span longer lengths in the spinal cord.  The LP is typically negative for O-Bands, but often shows a rise in the white blood cell numbers.  This disease can be very aggressive and we don't want you to have it.  There is also a blood test for a specific antibody, call the Anti-NMO antibdy (strangely enough) that can be sent to the Mayo Clinic.  It is positive in only about 70% of people with NMO, so if it is positive, it makes the diagnosis, but if it is negative you still don't know.  I am not an expert on NMO by any means, and it is very rare.

Do you know if the Anti-NMO antibody test was sent?

Another thought is the one you are questioning.  Is this PPMS?

Because more of the MS mimics have a fairly progressive course, this makes PPMS harder to recognize and diagnose.  The guidelines state that you need to see a year of steady (not necessarily fast) progression of symptoms before you can call the diagnosis.

So, your question is whether this is CIS and needs to be on a Disease Modifying Drug (an Interferon or Copaxone) or whether it is PPMS and we don't have a med yet for it.

The McDonald's Criteria PPMS is two fold
     One year of disease progression (retrospectively or
prospectively determined)

AND

      Two out of three of the following:

a. Positive brain MRI (9 T2 lesions or 4 or more T2 lesions with positive visual evoked potentials;

b. Positive spinal cord MRI (two or more focal T2 lesions);

c. Positive CSF (2 or more O-Bands or Elevated IgG Index)

Kelly, in your case you don't fulfill enough of the conditions.  You are "only" 4 months into this.  Even some aggressive experts are saying that 6 months is long enough, but you still are not there.  You don't have the brain lesions.  Do you have more that the one spinal cord lesion?  And your CSF was negative.

So, I agree that you need to discuss this with your neuro.  What are his thoughts?  Certainly if he is fairly certain that this is a CIS, you should be on a DMD, in the opinion of most experts.  

There is a highly respected MS Clinic near you called the Rocky Mountain MS Center.  Since your symptoms seem to be pregressing so fast, it would not at all be a bad idea to ask for a second opinion, but be prepared to be told that it is too soon to make a PPMS diagnosis.  I think the main questions right this moment is whether this is MS or NMO and whether you should be on treatment.

First see what your neurologist is thinking.  Get the reports of the MRI and the blood work up that your doctor should have sent.  Remember that MS CANNOT be diagnosed until the mimicking diseases have been ruled out.  So you should have had things like bloods tests for CBC, ANA, Sed Rate, B12, VDRL, HIV, Lyme Disease, Anti-Phospholipid panel, ACE, and maybe Wilsons, HTLV- I & II.  Get the record of the diagnosis of Optic Neuritis and any of the eye testing they did like peripheral fields, VEP, Color saturation.

Then, when you know what his thought processes are ask for a second opinion.  A second opinion is everybody's right and no doctor with good integrity should be offended or opposed to it.

I'm sorry all this is happening, but I hope this helps.  I hope you find a good place here for support and information.

Quix

[jensequitur]

Typically CIS only has one instance of symptoms - not relapse and remission, and not progression.

However, PPMS is hard to diagnose at first.  People have waited as long as ten years to be diagnosed with PPMS, because it's as much an observation of the course of the disease as it is a diagnosis.  

I would talk to your neurologist about your symptoms, and about how they're getting worse, not better.  Neurological damage does take a long time to heal, so it's hard to tell at first whether you're getting better.  But if you're having new symptoms, or worsening ones, then CIS is unlikely.

If you have questions, take a look at our Health Pages (upper right hand corner) - there's a lot of info on MS, PPMS, and CIS.