Just ranting...

[SunshineDaydreams]

I saw my neuro for the first time in almost a year this morning. He said basically my brain lesions are not big enough to dx me with MS - but he believes this is what is going on (I was already dx with MS at Hopkins-they also did t-spine MRI). He said he's calling this Probable MS - and because of the level of disability, he wants to test me for Neuromyelitis Optica.

This was scary to say the least - it took me a few hours to research, get scared that the symptoms match, convince myself I have enough other MS symptoms to still believe it's MS, and get my positive self back in gear!

The problem is - my dh has been nothing but sweet and loving since my definitive dx at Hopkins eight months ago. He suffers from scleroderma and I have cared for him for almost 25 years - he told me this is why he felt he had to do anything he could to help me - all the while watching me deteriorate.

This afternoon, all he did was yell at me. I thought this was because the possibility of NMO was equally as scary to him - but then he started telling me how he would like me to do more housework, more in the garden - that I need to get out and go for a walk (I can get about 25 feet with my cane before I have to stop - ? and have two wheelchairs and a walker - ?) and he doesn't want to hear about my pain or health anymore. I feel really unwanted and confused

I do everything I can here - I plant, harvest, and preserve our raised beds for our food - take care of our dogs and the chickens - do dishes, dust, laundry, cook most of our meals, bake our bread - every time he sees me doing anything, he tells me go sit down. I thought this was because he loved me - now I am thinking he feels obligated.

I'm sorry - I just had noone to talk to - I'm really confused

[Thinkimjob]

Hello. It sounds to me like he's scared. He could deal with you having MS, but now there's this other thing it might be.

It probably took him a long time to come to terms with your MS diagnosis, and now it might be something else.

He's probably angrier with the medical profession and the unfairness of the world in general than anything else, especially given his own trouble.

Can you get some help around the house? Paid, family or volunteer? He's frightened the pair of you will not be able to cope if things get worse.

[Camsue]

Hi SunshineDaydreams

Sorry you're having to go through all this, it sounds very confusing.
Your husband is handling the news with anger...We all wish we could just make this all go away, but we know that's not reality.
I hope things get to a mutual support for each other..Take care

[SunshineDaydreams]

Thank you both - I think you are right and after sleeping on this, I think I know why he got so angry.

We just found a few months ago that he has myopathy now related to his scleroderma. This is very scary - when the muscles start to waste in scleroderma, they generally keep going. We just went through trying to figure out how we would live here on the homestead if neither of us could drive. We had some fun with it and decided we would ride it out with the internet as long as we could.

Stupid me yesterday was thinking out loud and said something about 'if we did sell the place' - it wasn't like a - I want to sell - but more like a - WHAT IF we sold and spent what mobile time we have doing things we love. I think that's what sparked it - hearing this and then talking about selling

Thinkimjob - I have found many opportunities for volunteers to help with the garden beds, fences, and things like that - he won't have it. He does what he can over months until my brother usually ends up helping. I have managed to pay for some help also - right now waiting for my ramp to be built

[Grace53a]

Hi Sunshine,

For the most up to date information re: NMO please visit the Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research.

As for the issue of brain lesions in NMO, it's not an issue of size that differentiates them from the brain lesions of MS, but location. Previously, it was thought by the research community that NMO patients did not develop brain lesions, but they now know that a percentage of patients will indeed develop them though they are *not in a pattern that is consistent with MS* and the initial brain MRI is usually clean. Common locations for brain lesions in NMO patients, are the brain stem, thalamus, hypothalamus, pons, and any areas of the brain proper that have a high expression of Aquaporin-4 (water channel of the cell).

Also re: the NMO IgG test (AKA Anti-Aquaporin-4 Antibody). The Mayo initially used the Indirect Immunofluorescence Test (IFF) but now the preferred method is the ELISA, to be followed up by the IFF if the ELISA test is inconclusive. Keep in mind that while a positive is definitive for NMO, a negative cannot rule it out as there is roughly a 30% chance of a false or masked negative.

Respectfully,
Grace (NMO+ since 2005)

[sulphur kennel]

Sunshine

Sorry you are having to deal with this now. I don't have any advice but I do send my sympathy your way.

[wheeliegirl]

Hi sunshinedaydreams

Fear makes a man say the most hurtful things to those they love the most. My husband (who used to work in physical therapy ) said the same things. He also has severe osteo arthritis in his ankle with a a large bone spur cutting into his tendon plus he's bipolar. With my MS in mostly my spine plus other illnesses I also went into a wheelchair within the last 7 years.
With my dh it became a struggle as I used to care for his needs and my daughters . Until the day came that I couldn't see to drive ,work or manage to push myself to walk more than a few feet. He saw my going down hill . Pushed the dmd's on me thinking that they would fix everything.

In the last few years his ankle started fusing (not in a good way) . I started having to have surgeries . He can't work now and we are living of 900 a month most months.
With the frustration of not being able to support me and have to need me to help him things can get very heated here. Now he is getting his surgery soon. Things should get better.
Men are total fixers by design . For many years all I could do is pray for him and wait it out. Things are better now but by no means even close to perfect. Counseling or a good guy friend can help. We are going the MS walk for the first time this week to make friends and he can get greater insight on MS.

Maybe you can find a support group in your are for those that have scleraderma for you and your DH to go to?
Having to people with chronic illnesses is very hard to handle.
What I did with my husband is gave him what he thought he wanted to see in me trying harder. In trying had some bad relapses ,falling ,er stays. He understands now. (I don't recommend doing what I did )
I pray that your DH starts understanding about NMO and its similarities to MS . NMO is no cake walk . Somehow I'm thinking that your DH may believe that NMO is a lesser disease than MS which you know is very wrong thinking. ((((Hugs ))) to you . Please forgive the the long bio . Your post just touched my heart.

[SunshineDaydreams]

I am so scared - my husband just told me I talked about too much. Said I talked a out things I don't remember saying. And basically no really told me to go away. I am in our bedroom now with the door closed. He has gotten irritated with me for talking several times over the last few days. I don't know if I am really saying things that I do t know I'm saying and that is scaring me enough. But for my husband to send me away scares me even more. I don't know what to do I can't drive and we are rural. I don't even know if I should contact one of my children help

[SunshineDaydreams]

Thank you, WheelieGirl - I actually have been doing the same thing as you - trying with all my might to do all the things he wants. I've had more pain and falls, and muscle cramps than I want to even think about.

He slept on the couch last night and is quite happy and pleased with himself this morning. I am starting to wonder if I am really doing the things he is getting so mad about (talking? really?) or if he doesn't even know he's doing it?

I'm supposed to go with him to look over some auction stuff in about an hour - I don't feel like it on about three hours sleep. Trying to decide if I should just act like nothing happened - this is a miserable way to live

[hunterd]

I moved your thread here because I feel there are more that come here looking for threads and posts on this subject.

I am going through the same thing with my wife, I did not have to care for her, but she is tired of doing it for me. I guess I will keep trying to find a way to keep things" right". Good luck to you.

[CaroleL]

My heart breaks for those of you who have issues with MS and spouses. I'm am one of the lucky ones who has total support and care from my hubby. I can't imagine what's it's like for you, Sunshine and Hunter.

Super big HUGS to both of you!

[SunshineDaydreams]

Thank you Hunterd - I am so sorry you are going through this also, but I'm glad we can find understanding in each other.

I spent most of the night crying - what is really bringing me down is the fact that he is absolutely so unaffected by the way he treated me I just have a really hard time wrapping my head around someone who loves you being able to do this. I don't call that love