Spinal Cord MS

[Redilma]

Does anyone here have spinal cord MS, if so, what are your main symptoms and how do you find they differ from the symptoms that you read about of other (generalised?) MS sufferers?

[CheyTag]

I have often wondered the percentage of just spinal lesion MSrs.... I am to have complete spinl MRIs MS protocol finally soon after an abnormal vEP and confirmed ON/bilateral optic neuropathy (left eye worse than right). Left eye has not regained its full 20/20 correction either..

.. Unfortunately they couldn't see anything on my brain MRI in my optic nerves, but they could see the thinning in my OCT. I have had "episodes" many months apart of parasthesias, weakness, paralysis, difficulty speaking, poor cognitive abilities, etc... Since 2011 (age 36).... Still in limboland trying to find out wth is weong with me...

[firerescue9]

Thank you for the information Alex, this is very helpful.  When my ON broke out I went straight to my eye doctor.  They were able to see the swelling in the pictures that they took.  Also when they did the MRI they told me that they could actually see the swelling in the Optic Nerve.  My neurologist told me that was unusual.  They don't offend see that in an MRI.  I still have issues with the right eye, pain most days and anytime I am in sunlight or very bright rooms I can still detect a kind of patchy covering over my eye.  I know that is just the damage that was done.  Thank you again for the info.  So far my Brain MRI's have been clear.  I am not scheduled for another scan till September.    

[HVAC]

If you have Optic Neuritis you have MS on the optic nerve. Most damage in MS is gray matter which does not show up on MRIs. The rule is the MS goes as high as your highest symptom. With ON it goes to your head.

Alex

[firerescue9]

Kye thanks for information.  I am slowly beginning to understand all of this.  And I an finding that a lot of the "understanding" comes from discussions like these.  Not so much from what the doctors tell me.  I have excellent doctors but they are not going through it like most people on these chat sights.
Leanne

[kwarendorf]

oops...

More specifically, t-cells somehow cross the blood/brain barrier and wind up in the central nervous system. T-cells are invader killing cells, things like infection. When they get into the CNS they don't know what to attack. In MS they choose to attack the myelin coating nerves.

Because it doesn't reall matter if you have just spinal lesions, just brain lesions or both you tend not to see forums dedicated to one or the other. The progression, remission or severity of MS is not related to lesion location.

Kye

[kwarendorf]

Greetings -

I'm not really aware of any distinction between MS with only spinal lesions and MS with brain lesions. MS is pretty much just MS. The only dofference between the two would be the symptoms that lesions in different areas cause.

There are 3 places MS can attack; the brain, the spinal column (c & t spines) and the optic nerve. The nature of the attacks are the same. The immune system determines that the myelin sheath protecting nerves in the central nervous system is a foreign body and attacks it.

[firerescue9]

I also have only showed lesions in the spine, so far my brain scans have been clear.  My symptoms are a lot like most that have posted.  Much like kelly97 has listed.  I was diagnosed in January 2015.  The only difference that I can see is I have had Optic Neuritis in my right eye.  Spent a few week when I could hardly see out of my eye. I also have had hard time find info with only spine issues.  Mine hit me in September of 2014 with first outbreak.  I have continued pain daily that I take tramidol for this most days.  I just started taking copaxone so I am waiting to see if this is going to work.

[sunnyflorida2]

I know this is an old post but hoping some will check back.  I have MS in the spine only and yes it has been confirmed MS.  believe me I have check all of the test results and researched on line several times.  And if its not, science has not yet figured out what it really is yet.

I have all of the same symptoms or closely related...same symptoms different part or something.

There is not alot of information about people with lesions only in the spine with ms and I would like to communicate more with those that do have it.  Then we have more resources to inform each other of what works and doesn't and also perhaps the progression timeline of disability.
Perhaps I will make a group on the ms connection website for spinal ms??

[maxthecat43]

I have them on my spine too.  Left arm/leg weakness, hug, numb/tingly feet and hands, and bladder problems.  I also have several in my brain though.

Tammy

[heidiree]

It is like you were listing my symptoms! I could hardly believe it, down to the left side tugging and back of leg etc. What are you on to help? Right now, I am not on any MS therapy. I am trying a more natural approach (diet, exercise, relaxation, massage) & while my doctor was surprised that I have improved, I am stil struggling. I am happy to struggle, to fight the fight, but I am just wondering what others, like yourself with symptoms so similar to mine, are doing to help make the playing field maybe a little more level?

[Guitar_grrrl]

According to my general neuro, I have silent lesions on my spine.  Most of my sensory (paresthesias, L'Hermittes), spasticity, spasms, and weakness, urinary symptoms, etc. are attributed to spinal lesions.  My C-spine and T-spine MRIs don't show these lesions.  My brain has a number of lesions, though.  The big one on my brainstem is probably responsible for my TN.

Our Health Pages has an interesting entry called Lesions, Lesions, Lesions!  Describes locations and correlations, etc.  Have a look!

Cheers,
Lisa

[Jepster]

I've got some spinal lesions too, at C4-C5. They're playing up a bit at the moment and my right leg is pretty numb (sensory) and the l'hermittes has got stronger (I'm getting a shooting shock type pain down my right arm when I bend my neck forward, and my arm gets weaker at the same time).

The top part of my right arm and my right upper back are also sensory numb (local anaesthetic type feeling) and my left leg vibrates as through there's a phone ringing somewhere inside of it.

My neuro has said this is most probably to do with the spinal lesions being more active at the moment, but I do also have some brain lesions so it might be them all playing up in unison.

MS is definitely a MyStery!

[retreat]

I have MS is my spine only, the last mri showed it had not spread. I have nunbness and tingling in both hands, my neck is always stiff. I am in cronic pain and have random spasms in my legs and groin. It is not pleasent and trying to convince Dr.s that I am in alot of pain is a joke. They think everone is out fishing for a fix. Not being understood is the hardest part.

[Redilma]

Thanks for the input Bob, though I wasn't referring to MS of the spinal cord as being 'spinal cord MS' as an official term. It was just my way of simplifying things. I suppose what I was trying to say was; MS with evidence of spinal cord lesions only (that isn't to say brain lesions aren't present). Though I was also interested to hear back from all those who have spinal cord lesions, and how this affects them, really.

[COBOB]

I'm not sure I would refer to lesions on the spinal cord as "Spinal MS."  It is more like MS with spinal lesions.  There is a subset of MS that is referred to as Optico-Spinal MS that is a combination of NMO (Neuromyelitis Optica) with lessions on the spinal cord that is common in Asian populations.

There is also a demyelinating disease of the spinal cord called Transverse Myelitis (TM) that has some similarities to MS, but can occur independently.  Some people with (TM) seem to go on to develop MS.

At this point in time, we talk about MS like it is a singular disease, and you will see some posts that say "MS does what it does."  In truth, there is some emerging evidence that MS may be a "spectrum" of neurologic diseases.  There is pretty good agreement that one form is caused by a direct immune response against the CNS that results in demelination.  There are some other diseases that may be the result of failure in ion channel pumps within the nerves themselves.  There are also some evidence that persistent viral infections within the CNS can cause similar issues.  

This may be more complex than a single disease.  Considering all of the issues with diagnosing MS today, I'm not sure I expect the medical community at large to do better at figuring out the specific subset of the disease.  The main hope in identifying the subsets is developing specific tests and therapies and improving the long term outcomes.

Bob

[jensequitur]

I have several lesions in my spine.  One at T10, which causes leg weakness in my knees, and upper lesions, which cause MS hug.  There's also sensory problems - numbness and paresthesia, cramping, myoclonus, bladder and bowel issues.

[anon07072023]

I have lesions in my spine.
Some of my symptoms are:
l'hermittes
numb/tingling feet
left leg weakness - and sometimes weakness on both legs
tightness/pulling/spasms on the back of my left thigh
foot cramps
pinpricks/numbness on left side from toes to tailbone
MS hug
bladder issues
and hypersensitive skin on the inside of my lower left leg.

-Kelly

[jujuminx]

Spinal lesions here.  Past sx with numbness, tingling, burning sensations, liquid sentations, etc, all in either limbs or trunk.

Julie

[Lulu54]

My MS lesions on the spine affect my bladder function.  The signals are not clearly communicated and voiding is often complicated.    Spinal lesions disrupt the flow of the signal  to and from the brain and can cause all sorts of problems, especially with your limbs.  

best, Lulu

[nicnic34]

hi :-) I'm pretty new to all  this but i have lesions on my spinal cord aswell as my brain, main problem is l'hermittes, but have also recently had numbness from chest to knees, don't know if it's related to the spine one or something new :-(
best wishes
nic