History Repeats Itself

About 18+ months ago I asked the question of Neurologist, Dr. Sethi -


I wanted to see if you would inquire with Dr. Sethi which disease modifying drugs he felt worked best for someone who has several Spinal Lesions after 5 years of MS with no previous DMD's. If they cannot tolerate interferon's what would be his next course of action?

I'd appreciate it! (Lanette also wants to add that she has 4-5 brain lesions and the same in her spine.)

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His answer....

Hello there. Thank you for asking that question. Spinal MS (a patient with MS who has predominantly MS involvement of the spinal cord, the brain is relatively spared) is at times associated with high morbidity and mortality rates. The reason is that all the tracts which carry nerve impulses to and from the brain are concentrated in a relatively small area in the spinal cord. So even a small strategically placed lesion in the spinal cord can cause significant neurological impairments. Patients with spinal MS present with slightly different clinical signs and symptoms. They may present with what is called transverse myelitis (this is an involvement of the spinal cord usually at the cervical or thoracic level). Transverse myelitis can be devastating because all the descending motor fibers from the brain and the ascending sensory tracks are packed in the small diameter of the spinal cord. So any involvement of the spinal cord has the potential to affect all these tracks. Depending upon the level of cord involvement patients may have either weakness of just the legs (paraparesis or paraplegia) or all the four limbs may be involved (quadriparesis or quadriplegia). Usually the bladder and bowel are involved too and patients may have complaints of urinary incontinence. Sexual dysfunction is also commonly reported.

Spinal MS is treated in much the same way with traditional disease modifying drug therapies such as interferons. If a patient cannot tolerate one particular interferon, it may still be worthwhile attempting therapy with another interferon (for example if you cannot tolerate interferon beta 1 b, interferon beta 1a may be tried). The other option for RRMS would be to use glatimer acetate (copaxone) or Nataluzimab. Nataluzimab can at times have very serious side-effects and potential complications. Hence there are strict criteria which determine which MS patient can receive this drug.

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So, here we are about 2 years later since my last Flare that prompted the above question and I asked the same question again. My current Flare is exactly the same as the last. Copaxone isn't cutting it. Dr. Sethi is not the first, but rather the third Neuro that has told me Spinal MS typically has a high morbidity and mortality rate. And....I have Predominately Spinal MS. I have more lesions in my spine than in my brain. That's bad. I'm upset. I don't want to become disabled and die young like my mother. I don't want a life that ends to soon due to some Fing incurable disease. I do not have the strength to go through what I saw my mother go through. Sitting here crying about it won't help. It won't stop it, but sometimes you just have to cry.


February will be 8 years since my MS Diagnosis. I'm still upset. I'm Mad. I'm Scared. Why do some have easy MS paths and others harder?