Neuromyelitis Optica: The Learning Center

Honey you have every right to cry. Its not fair at all, and I am so sorry you have to deal with this. Anyone that deals with a chronic illness is subject to depression over it, so do not feel ashamed or confused by that. Allow yourself to be sad, but if it ever feels unmanageble or goes on too long...get some meds for that and a professional to talk to. Totally normal to do so, and in my opinion would be silly not to. I will pray for you tonight.

Hugs,
Cara

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-----Original message-----

From: Meg Malik [email address removed] Devic's Support [email address removed] Thu, Sep 29, 2011 14:28:18 GMT+00:00
Subject: [Devics-spectrum] Just received first 5 day round of IVIG

Hello all,
I have had numerous problems for the past 10 years and was diagnosed
in Jan 2010 with MS. Upon seeking another opinion (after no MS
therapies worked) I was told I could have NMO. I go back on the 7th
of OCt. and expect to be diagnosed and get my treatment plan. THe
IVIG really helped me with my pain. Before it was coming through the
methadone.

While I realize all of my blessings for some reason today I am really
struggling emotionally. I have held it together very well...but feel
like I need to cry all morning today. Dunno...just felt like reaching
out to those who may understand?

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Carol

Meg...
I think it is safe to say that we have all been there...The NMO diagnosis is scary for sure!
Please realize that you don't need to feel guilty for what you are feeling. No feelings are "wrong". As with any chronic illness there are ups and downs. I hope you see that this is just a bump in the road and there are brighter days ahead for you.
I know for me one of the most difficult things was that no one really understood or had even heard of the NMO. I worked in a Coronary Intensive Care unit and autoimmune diseases was very misunderstood.
I too try very hard to focus on my blessings with the realization that it could be soooo much worse. I think that living the day thatI have been given to the fullest is also something that I keep in mind, not that I always accomplish this...
NMO stinks and is not fair but that is not to say that we cannot live a full and fulfilling life now.
I want you to know that you are in my thoughts and I am sending good "vibes", prayers & hugs your way.
Many Thoughts
Carol Adams

Carol 217 days ago

Michelle

Hi Meg,
I'm so sorry you are going through this! I too just got diagnosed with NMO last month. I was originally diagnosed in 2002 with MS even though my brain MRI was normal and I only had lesions in my cervical and thorasic spine and had on. I did well for a number of years and then in August I started having symptoms again.

I have a new MS Neurologist who re-did MRI's, blood tests etc and even before the tests came back he was thinking NMO.. I didn't really pay a lot of attention to it thinking, no, it was MS. Well, my MRI's are consisent with NMO and my NMO igg blood test is very high positive. I just had my 2nd NMO igg this last week and it too came back positive, just as high...So, I too am dealing with a new disease diagnosis. Everything has happened so fast and I feel like crying from time to time. It definitely can feel overwhelming. So, I am with you! For me, I just talk a lot with my husband about how I'm feeling and I pray A LOT! I believe that God has a plan and it's a plan for good! So, I cling to that!

This site has some WONDERFUL people to encourage and give advice, so like you, I am here too, hoping to connect to people who will understand what I am going through.

I hope the best for you and I will keep you in my prayers.

Hugs,
Michelle

Michelle 212 days ago

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carahill

Re: [Devics-spectrum] Just received first 5 day round of IVIG

carahill

Carol

Michelle