[LoveCats]

I have had problems for the past 10 years and have been diagnosed CIS.

I just had a repeat brain mri and a cervical spine mri. From what I can read on the report the brain is still clear but the cervical spine has several lesions. These join the 'numerous' thoracic spinal lesions I have.

I have been on Avonex for almost 10 years.

No relapses but I am getting progressively worse in my walking, strength and coordination. Have a permanently numb feeling in my left foot as if it would be swollen but it isn't.

My doctor who is an ms specialist says I am a 'hard' case to figure out. He just did a boatload of bloodwork looking for muscle diseases and mg. I think my last nmo test came out negative a few years ago. He insists I am not PPMS. I think maybe I am SPMS?

I have low B12 and get monthly B12 injections. I also take 5000 iu of vitamin D3 daily since I had low vitiamin D.

Anyone else out there in the same situation? Any thoughts? I just would like some answers on what is destroying my body and shrinking my life.

[SallyC]

I am cursed with both, but what it has to do with progression of
this rotten disease, I have no idea.

[Starznight]

I don't appear to have spinal lesions, just brain lesions, but when it comes to determining the difference between PPMS and SPMS, it is my understanding that it has to do with the time between flares, and lesions presenting. More so than the location. PPMS is more like 'the highway to hell,' and SPMS is the 'city streets to hell.' You get more stop lights with SPMS.

Then there's the lucky groups in PRMS, and even luckier SRMS. Where the PRMS get to go hurling down the highway, pull off backtrack a bit taking in the sights before jumping back on, and those taking the true scenic route, weaving forwards and backwards distracted by butterflies and leaves along the way. (My aunt is fortunate enough to have that form, has a little flare, rebounds, meanders for a bit, oops little flare... Ahh we're better now). Insert complete jealousy and envy here:

Granted that's just my understanding, I had a great uncle with PPMS who went from a giant larger than life hero! To a frail shadow of himself in just a few years... Long before they had any treatment to speak of. My aunt by marriage has the SRMS, and my mother was an EMT for a private ambulance that often transported people with MS on a regular basis for dr appt, and such. We didn't see much of the regressive group, but it got fairly easy to tell the SPMS from the PPMS patients, even when both had lost their mobility. The rapidity of decline was too marked. Which might be why your doctor is denying PPMS dx, even if your still creating lesions.

And the presence of lesions also doesn't seem to matter as much as how they effect you, again from my understand, my aunt has numerous lesions in her brain and spine but even when she's in regression they don't really 'go away' but they aren't affecting her. Either they aren't in an area to pose a problem for everyday living or her body is capable of creating new pathways for the information to travel through. So yeah, tricky disorder to try and make sense of, and how doctors classify you, it seems largely guess work on their part as well.

[LoveCats]

Originally Posted by Starznight

Granted that's just my understanding, I had a great uncle with PPMS who went from a giant larger than life hero! To a frail shadow of himself in just a few years... Long before they had any treatment to speak of. My aunt by marriage has the SRMS, and my mother was an EMT for a private ambulance that often transported people with MS on a regular basis for dr appt, and such. We didn't see much of the regressive group, but it got fairly easy to tell the SPMS from the PPMS patients, even when both had lost their mobility. The rapidity of decline was too marked. Which might be why your doctor is denying PPMS dx, even if your still creating lesions..

I'm not sure if I am developing any more lesions since the neuro said he would not repeat the mri of my thoracic spine since there were so many lesions it would be hard to tell if any were new ones. I have to ask about the cervical spine because I think the mri I just had was my first one of cervical area of the spine but I am not sure. But my neuro did say that most PPMS people present with mobility problems first and not sensory problems like I did.

Originally Posted by Starznight

And the presence of lesions also doesn't seem to matter as much as how they effect you, again from my understand, my aunt has numerous lesions in her brain and spine but even when she's in regression they don't really 'go away' but they aren't affecting her. Either they aren't in an area to pose a problem for everyday living or her body is capable of creating new pathways for the information to travel through. So yeah, tricky disorder to try and make sense of, and how doctors classify you, it seems largely guess work on their part as well.

I think my lesions have taken up residence in prime real estate and don't want to leave

[Snoopy]

Hi LoveCats,

But my neuro did say that most PPMS people present with mobility problems first and not sensory problems like I did.

Wow. Not true.

You can present with mobility problems, but that alone will not indicate the "type" of MS you may have.

My mobility was severely affected during the entire diagnostic process. Over time it was determined I had Relapsing/Remitting MS, not Primary Progressive.

MS specialist or not, you need a new Neurologist. My opinion.

[LoveCats]

Originally Posted by Snoopy

Hi LoveCats,



Wow. Not true.

You can present with mobility problems, but that alone will not indicate the "type" of MS you may have.

My mobility was severely affected during the entire diagnostic process. Over time it was determined I had Relapsing/Remitting MS, not Primary Progressive.

MS specialist or not, you need a new Neurologist. My opinion.

I didn't explain it correctly. He wasn't saying that all people presenting with mobility issues have PPMS. I think he was saying that was one of the reasons he was ruling out PPMS for me.

[Snoopy]

Hi LoveCats,

Spinal cord lesions, in MS, are well known for causing mobility problems. Spinal cord lesions can cause symptoms from the point of lesion down.

When I was diagnosed, oh so many years ago, I did not have any MRI evidence of MS. I was diagnosed based on a positive Lumbar Puncture, Neurological exam and symptoms. I was in a severe exacerbation.

My Neurologist said based on my symptoms the disease was affecting the spinal cord.

My MRI of the cervical spinal cord I had few years ago showed numerous (too many to count) lesions. My brain only 3. At this time my cervical spinal cord has a very countable 3 and my brain MRI has no changes.

No relapses but I am getting progressively worse in my walking, strength and coordination. Have a permanently numb feeling in my left foot as if it would be swollen but it isn't.

I would hope your neuro has recommended Physical Therapy and/or exercise to regain or try and maintain your walking, strength and coordination. If not please be pro active in discussing this issue with him.

I have had problems for the past 10 years and have been diagnosed CIS.

I just had a repeat brain mri and a cervical spine mri. From what I can read on the report the brain is still clear but the cervical spine has several lesions. These join the 'numerous' thoracic spinal lesions I have.

My doctor who is an ms specialist says I am a 'hard' case to figure out.

Ten years, in my opinion, is a long time to leave you sitting with a CIS diagnosis. I am wondering if he just can't get off the fence

You might consider seeking a second opinion that might be able to confirm a MS diagnosis or take you in a different direction.

Best wishes.

[LoveCats]

Originally Posted by Snoopy

My MRI of the cervical spinal cord I had few years ago showed numerous (too many to count) lesions. My brain only 3. At this time my cervical spinal cord has a very countable 3 and my brain MRI has no changes.

That is why my neuro used the term numerous. He said there were too many lesions to count on my thoracic spine.

Originally Posted by Snoopy

I would hope your neuro has recommended Physical Therapy and/or exercise to regain or try and maintain your walking, strength and coordination. If not please be pro active in discussing this issue with him.

I did PT last summer for this issue and it helped somewhat but I can't find the handout of exercises I did and don't remember much of them. I plan to ask for another script so I can go again and this time keep up with the exercises at home.

Originally Posted by Snoopy

Ten years, in my opinion, is a long time to leave you sitting with a CIS diagnosis. I am wondering if he just can't get off the fence

You might consider seeking a second opinion that might be able to confirm a MS diagnosis or take you in a different direction.

I an debating seeking a second opinion. My neuro is an MS specialist with the large university hospital in the area but 10 years being CIS is a long time. How does one go about seeking a second opinion? Do you tell the first neuro or just go to another neuro? There is another MS specialist in the practice and he is very popular and well regarded so maybe I can just request an appointment with him? The only issue is that both neuro's are booked at least 3-4 months out. I will give it some thought.

[Snoopy]

Originally Posted by LoveCats

I an debating seeking a second opinion. My neuro is an MS specialist with the large university hospital in the area but 10 years being CIS is a long time. How does one go about seeking a second opinion? Do you tell the first neuro or just go to another neuro? There is another MS specialist in the practice and he is very popular and well regarded so maybe I can just request an appointment with him? The only issue is that both neuro's are booked at least 3-4 months out.

Your Primary Care Physician could give you a referral to another Neurologist or your Health plan should have a list of in network Neurologists that you may be able to contact for an appointment.

If you decide to get a second opinion make sure to have all testing related to your CIS diagnosis ready to take with you.

[LoveCats]

Originally Posted by Snoopy

Your Primary Care Physician could give you a referral to another Neurologist or your Health plan should have a list of in network Neurologists that you may be able to contact for an appointment.

If you decide to get a second opinion make sure to have all testing related to your CIS diagnosis ready to take with you.

I am seriously considering it. Thanks.