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LiberalLoner

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Member since: Fri Nov 20, 2009, 01:17 PM
Number of posts: 6,141

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Then there is the other side of the fence - me and every other female MSer I've met....

Trying and trying to get help for years from doctors for all kinds of weird symptoms like having to void the bladder 20 times a night, blurry vision with eye pain that comes and goes, aching legs at night, overwhelming fatigue, etc. and being told its all in our heads, it's because we never had children, etc.

Funny how all the other female MSers I've met online have had the same experience as me...but none of the male MSers have. Maybe there is some bias there.

The average time to diagnosis is six years from the start of symptoms in MS. We need to do better than that because early treatment is crucial. In my case it took 12 years to get a diagnosis and along the way "functional somatic syndrome" was slapped on me because my bladder problems did not respond to the IC meds. The meds didn't work for me because I had MS, not IC.

We need and deserve better than that from the healthcare professionals.

Granted, I was using the Army system and I believe it inferior to the civilian system, but still....

PS I guess what I am saying is, some of us try to become our own doctors out of frustration in situations like mine....
Posted by LiberalLoner | Wed May 8, 2013, 12:20 PM (1 replies)

I have decided to follow the low fat Swank diet for my MS.

It's going to be so hard but if it helps me slow down the MS, it's worth it. Getting monthly relapses now and acquiring some disability. The data looks promising for this helping MS a whole bunch.

I'm sorry you have this too.

I hope you are doing okay!

I do seem to be RR, still in middle of diagnosis. The neuros say I have for sure a CNS demylenating illness with one large, bad spinal lesion stretching over several vertabrae and two small lesions in the brain and some signs of mild ON. But they were not sure which disease, which is why they did the NMO test and a bunch of other tests. I do have oligoclonal bands in spinal tap. So at least to me it sure looks like a bad form of MS.

I want to take DMDs pronto because I have had 3 attacks now in 3 months and want to slow this stuff down. Bought a walker, if I get any worse will need to use it. Getting by for now, just very stiff and limpy and have clumsy hands, weak legs, headaches, bad bad fatigue, twitching, jerking like seizures, muscle cramps, seem to be overly emotional lately, cry too easily.


I want an orange tshirt that says that!

Treatment will have to wait until doc comes back, she is away right now. I am leaning towards Copaxone.

NMO is like MS only more severe and usually fatal within a decade.

Only MS, NMO came back negative!

I know there is a 30% false negative on that test but I'm still so very relieved! MS isn't the greatest disease to have but it's better than NMO so today I am very relieved.

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....

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....

Just an update

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.

And one more song. This one never fails to leave me in tears.

Posted by LiberalLoner | Tue Apr 9, 2013, 04:52 PM (0 replies)

Dedicated to all who served in Vietnam.



Posted by LiberalLoner | Mon Apr 8, 2013, 01:19 PM (3 replies)
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