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Wed Apr 10, 2013, 06:56 PM

Just an update

Last edited Thu Apr 11, 2013, 02:25 PM - Edit history (1)

Still waiting for an answer from my neuro about test for NMO. Have been reading up on MS and I am certain From my symptoms it's MS.

My husband will call the neuro next week to get an update. He is active duty and therefore gets more respect and action than me, since I am only a dependent.

In the meantime I am just getting over another bad relapse (my third in three months) and now I have bad headaches all the time, my whole body jerks me awake at night several times as I'm trying to sleep, and my right leg is really messed up now, to the point where I need a walker to walk more than short distances and I do not feel I can drive safely.

Really hoping my doctor decides for sure what I've got and helps me, before I end up paralyzed, bedridden and on a ventilator.

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Arrow 9 replies Author Time Post
Reply Just an update (Original post)
LiberalLoner Apr 2013 OP
Warpy Apr 2013 #1
LiberalLoner Apr 2013 #4
Warpy Apr 2013 #8
LiberalLoner Apr 2013 #9
NightWatcher Apr 2013 #2
LiberalLoner Apr 2013 #6
libodem Apr 2013 #3
LiberalLoner Apr 2013 #5
LineLineLineNew Reply .
libodem Apr 2013 #7

Response to LiberalLoner (Original post)

Wed Apr 10, 2013, 07:04 PM

1. Medical care for dependents used to be fairly good

but not since the Republicans decided that you don't deserve health care any more than veterans do. Sequestration has also likely hit it hard. Don't take it quietly, educate anyone you can.

A diagnosis generally means there is a treatment unless it's something we don't know how to treat, like ALS. Even if you do end up in a chair short term, it's not likely that you'll stay there.

There is a clear blood test diagnosis for NMO. MS is commonly diagnosed through spinal fluid analysis and now by MRI. Although the symptoms overlap, the diagnosis and treatment do not. You need to know for certain what you've got.

The good news is that both of them are treatable, although not curable.

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Response to Warpy (Reply #1)

Wed Apr 10, 2013, 07:30 PM

4. Thank you. My spinal tap showed oligoclonal bands consistent with MS,

My symptoms and signs are just about too numerous to list...significant ones are abnormal gait and leg weakness, blurry vision consistent with ON, positive babinskis, absent Achilles' tendon reflex, hyperreflexia of my knees.

MRI showed a very large lesion on my thoracic spine (covering several vertabrae) and a couple of small ones in my brain.

Yeah, everything is going to sh*t because of the R's. it's like they WANT to create hell on earth for all non-billionaires.

I'm just tired of these relapses. This last one, my back hurt so bad I almost passed out when I sat on the toilet. I'm guessing there is another lesion on my spine now.

My PCP called me to give me a referral for a colonoscopy (weird, they must really want me to have one for some reason?) and I can only assume that was on behest of the neuro although I don't know why that would be part of the diagnostic process.

Ps they took blood for NMO test 5 weeks ago now....shouldn't I have the results by now???!!!!

Pps the neuro did say that I absolutely DO have a demylenating disease of the CNS...they just need to figure out which one it is before I can get treatment....

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Response to LiberalLoner (Reply #4)

Wed Apr 10, 2013, 08:42 PM

8. Any kind of immune panel on blood takes forever

but it should be back very shortly if not right now.

Starting any sort of treatment before the diagnosis is nailed down tight can make you even sicker, so take a deep breath and wait for your hubby to come home and light a fire under their butts

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Response to Warpy (Reply #8)

Wed Apr 10, 2013, 09:40 PM

9. Thank you. I will try to be patient! This last relapse (last week) was just excruciatingly

Painful. The only way I got through it was by taking dilaudid I had left over from a previous surgery. And now I have no more dilaudid left so if the pain comes back I will have to go to the ER. And since they do not give out painkillers other than Tylenol or Motrin at military ERs, the only way Id get pain control is to be admitted to the hospital.

And I already went through that two years ago when I had my first bad bout with this crap. Because I had an implanted device at that time (which I have since had removed, long story) they could not do an MRI. So they misdiagnosed me with GBS instead and stuck me in neuro ICU for ten days. Fun fun fun. But they did at least give me painkillers for the excruciating back pain.

I'm just tired of being blown off, misdiagnosed, tested, tested, tested, with no idea of when I will finally get some help. But I will try to be patient for just a fewmoreweeks at least....

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Response to LiberalLoner (Original post)

Wed Apr 10, 2013, 07:08 PM

2. I always hate the waiting

Waiting leaves you too much time to search the cursed google.

I don't know about the military medical system other than my friend who hates trying to deal with them while her husband is deployed. I'm personally on the charity hospital medical system.

Good luck with whatever is learned from the Drs

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Response to NightWatcher (Reply #2)

Wed Apr 10, 2013, 07:32 PM

6. Thank you so much!

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Response to LiberalLoner (Original post)

Wed Apr 10, 2013, 07:29 PM

3. The waiting must be difficult

And your symptoms sound really crappy. Hope you get your diagnosis so a treatment plan can be initiated.

I have a close friend with MS. She was on Interferon shots for years and didn't seem to have any relapses.

She is now on a pill to suppress her immune system, called Gylenia. I went to a seminar with her about it.

I hope your symptoms abate very soon. Of course this stress can not be helping.


Sending vibes and what ever prayers an atheist counter-culture free thinker can send.

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Response to libodem (Reply #3)

Wed Apr 10, 2013, 07:31 PM

5. Thank you so much! Yeah, I'm feeling stressed TBH.

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Response to LiberalLoner (Reply #5)

Wed Apr 10, 2013, 07:39 PM

7. .

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