The Similarities and Differences Between NMO and MS

You know that feeling after you have received really bad news, the one where you wake up and pray to God that you were just having a nightmare and that your life really didn't change at all? Yeah, I am living that nightmare again. I can honestly say that there are levels of Hell. Bob and I were just on the first level after learning that Sarah had MS, and now upon hearing that she may have instead (or also) NMO we have been welcomed into the second level. Here is why I am losing my mind all over again with grief:

Similarities

MS (Multiple Sclerosis) & NMO (Neuromyelitis Optica or Devic's Disease)

Both are incurable autoimmune diseases.

Both cause Optic Neuritis, bladder issues, loss of sensation, paralysis.

Both present themselves with lesions on a persons spinal cord and/or brain.

Both need to be treated with at least steroids when an exacerbation pops up.

Both diseases affect females more than males.

The cause of both are unknown.

A vitamin D supplement is recommended for both diseases.

Both recommend Plasmapheresis as a secondary line of defense when other treatments don't work.

Differences:

MS tends to cause damage to a persons body over time.

NMO tends to cause a good amount of damage over a short time.

MS tends to affect people living away from the equator and inland.

NMO is spread out equally all over the world.

MS can (supposedly) be helped by Interferon drugs like Avonex.

NMO can actually be worsened by drugs like Avonex.

MS tends to affect a greater number of people of European descent

NMO tends to affect people from all descents equally.

MS primarily presents itself as brain and spinal lesions.

NMO mainly presents itself as spinal lesions (although in rare cases it can present itself with brain lesions a bit different than those of MS).

MS affects about 400,000 Americans.

NMO affects about 4,000

NMO-IgG (an anti-body) is not found in MS patients, but it is found in about 70% of NMO patients.

People do not usually die from MS.

People can die from having NMO.

MS patients with Optic Neuritis will generally see an improvement in their vision after one dose of steroids.

NMO patients will not. NMO feeds off on steroids.A person's Optic Neuritis will return again and again if solely treated with steroids. 

MS tends to respond well to IVIG.

NMO does not respond well to IVIG.

50% of NMO patients are blind/paralyzed within 5 years of presenting symptoms.

Sarah's new neurologist at the Mellen Center is not sure if Sarah has MS or NMO at this point. Because her Optic Neuritis is not going away she is going to treat it as NMO. I find it hard to believe that Sarah has NMO (although I believe that I brought up in a past post how Bob and I thought that her symptoms were more in line with NMO) probably because I couldn't think of a lot of worse conditions for Sarah to have. Now that she is facing the possibility of having NMO - I know that there are worse things than MS. 

Sarah was given the drug Imuran to help her to stop having exacerbations. Imuran, as it is being used in her, is off label. (This means that the drug is being used for something other than what it was intended to be used for.) I guess one of the good things about this drug is that it is effective in treating both NMO and MS. There is an increased risk of Sarah developing cancer and just like Avonex, she has to have a blood test every few months to make sure that the toxicity of of this drug is not affecting her liver function negatively. Imuran is an immunosuppressant, which means that the common cold for Sarah could quickly become pneumonia or something else more serious because her body will no longer be able to fight off an infection like it used to. Her new doctor foresees her being on this drug for a loooonnnnnggggg time. 

This is where I am at with all of this:

 Sarah was diagnosed as having MS by two separate doctors - one of whom specializes in pediatric autoimmune diseases. I would think that if she really did have NMO one of them would have caught it. Sarah's MRI's have all shown (she has had 3 of them in the past 8 months) no spinal lesions. She does, however, have brain lesions. (This makes me more inclined to lean towards MS). When she had her spinal tap Sarah did not have any oligoclonal bands (which are found in MS patients) and she did have an increase in white blood cells (which are more prone to be found in NMO patients). Her Optic Neuritis does well when she is on steroids, but comes right back shortly after ending steroids (which leads me in the direction of her having NMO). She shows signs of fatigue easily which is a first line symptom of MS, whereas fatigue is a secondary symptom of NMO (meaning that she is tired only because something else caused it - lack of sleep, lack of exercise, etc....Basically, she would be tired for the same reasons that you and I get tired.) This leads me to believe that she still has MS...until I start to think about something else and it pulls me in the other direction...I guess for Sarah there are no clear cut lines saying that she has one of these diseases or the other. If I had to rely on my gut (which may or may not be tricking me right now because of how scary NMO is to me) I would say that Sarah has MS with just a really bad case of Optic Neuritis. I guess time will tell...

We now have the neurologists cell phone number (which suggests to me that we are dealing with something pretty serious). We are to call her immediately if we see any negative changes in Sarah's vision. We no longer have the luxury of staying home. She will need to be placed on steroids right away to deal with the acute stage of the disease. I have expressed my concerns about Sarah and steroids, and while those concerns were heard I get the feeling that there is not much I can do about it. My only hope at this point is that this new medication (when she starts it) will put this case of Optic Neuritis to bed and I won't have to worry about putting her through another round of steroids for a long time. From what I understand, if Sarah has MS, once we get her eyes back on track, we may have years of being symptom free. If this is indeed NMO, I do not think that we will have that luxury. Hospital visits will become part of our norm. 

We will know in the next couple of months (after another blood test and MRI) if Sarah has MS or NMO. For now, it is just a waiting game to see how much of Sarah's vision can be recovered. 

It's funny - I woke up on Monday morning so excited to see this doctor because I thought that she was going to go over some long term care options for Sarah's MS. Instead, I walked out of the door more scared and confused than ever. 

Here are some useful resources in case you are curious:

http://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/neuromyelitis-optica

http://myelitis.org/symptoms-conditions/neuromyelitis-optica/signs-symptoms-nmo/

http://www.nationalmssociety.org/about-multiple-sclerosis/related-conditions/neuromyelitis-optica-nmo/treatments/index.aspx

***Disclaimer - I am not a doctor. Do not take this information as medical advice.***

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