You have incredible courage to bear all these doctors, nurses and intrusive investigations and questions. I can only imagine how awfully vulnerable and exposed you must feel right now. You know, the neurologist doesn't sound so bad, after all, if she's willing to contribute! Crossing my fingers that some headway is made soon in explaining your bizarre condition.

Thanks for the update. Happy to hear they don't think it's MS.

Allie

Quote from: Alainaluvsu on July 19, 2014, 12:32:57 PM
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS. She straight up said my MRI from April and my CT from the other day do not indicate MS. However I'm still waiting for a spine MRI / tap, so who knows. She does acknowledge I am a strange case, because of how some symptoms above the shoulders are occurring. They could look at my spine and see a pinched nerve and 3 lesions. Who knows. My fingers are crossed but I'm still not walking.

BTW a little side note, the neurologist straight up asked if I had surgery. I know this offends some people but IDC. She went on to say if she had 20 grand she'd pay for it for me lol! (She's a resident).

I suppose that given she's one of your doctors her inquiry was fair enough. What a sweetheart though huh?

I hope you get better soon. I had a vertebrae in my neck misalign with the rest of my spine and that was aweful, the pain was unbearable and I couldn't really move my head or anything. I went to all of these different hospitals and they were useless loading me up on Valium saying they didn't want to do anything because it might damage nerves....

Then we found a chiropractor who said surgery wasn't even needed, and over like 6 months he fixed it when the hospitals hadn't done anything helpful in over a year.

Issues with the spine are no fun at all, but hopefully it is something they can just fix rather than something like MS.

Quote from: Alainaluvsu on July 19, 2014, 12:32:57 PM
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS.

Really glad to hear that. This is why you should never assume the worst, until you are absolutely sure. I've found that practically every time I have ever assumed the worst about something, I have been wrong.

Quote from: Alainaluvsu on July 19, 2014, 12:32:57 PM
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS. She straight up said my MRI from April and my CT from the other day do not indicate MS. However I'm still waiting for a spine MRI / tap, so who knows. She does acknowledge I am a strange case, because of how some symptoms above the shoulders are occurring. They could look at my spine and see a pinched nerve and 3 lesions. Who knows. My fingers are crossed but I'm still not walking.

BTW a little side note, the neurologist straight up asked if I had surgery. I know this offends some people but IDC. She went on to say if she had 20 grand she'd pay for it for me lol! (She's a resident).

see their not all a bunch of meanies

Quote from: stephaniec on July 19, 2014, 07:55:05 PM
see their not all a bunch of meanies

I've never been treated poorly by medical professionals. That was never my worry. I just don't like the invasive procedures (urinalysis, etc).

Quote from: Miyuki on July 19, 2014, 07:15:17 PM
Really glad to hear that. This is why you should never assume the worst, until you are absolutely sure. I've found that practically every time I have ever assumed the worst about something, I have been wrong.

Well that's why I assumed the worst ... but then again MS is not ruled out, I just had a spine MRI w/ and w/o contrast and may still need a spinal tap.

Quote from: Shantel on July 19, 2014, 04:44:45 PM
I suppose that given she's one of your doctors her inquiry was fair enough. What a sweetheart though huh?

She asked it in curiosity, I could tell. She sounded excited to get to know me. That question doesn't bother me if it's asked in the correct tone. I could tell she's not the kind of person to negate my gender based on my body parts alone.

Quote from: Evelyn K on July 19, 2014, 01:46:40 PM
Alaina *hugs*. Fingers crossed for no MS.

Do you think this might might tied to rapid heart rates as well?

No. The heart condition is probably an extra electrical accessory (an extra nerve) going to the heart. It wouldn't contribute to the other stuff, because that nerve is a 1 way nerve.

Another update:

I had my spinal MRI. I'll know the results when I know em. They're really reaching. They drew blood for stuff I had draws for 2 months ago. They also tested me for HIV. At least I'll know my HIV status in a few days. I doubt I have HIV, as I doubt neurological symptoms from HIV would predate any drop in immunity.

Did they test you for Lhermittes's sign? That's a pretty telling sign in MS and an easy test to do.

Did you have an injury at an early age? You don't tend to see spinal myelopathy in people under 50 unless there was an injury.

Quote from: Wynternight on July 19, 2014, 10:45:38 PM
Did they test you for Lhermittes's sign? That's a pretty telling sign in MS and an easy test to do.

Did you have an injury at an early age? You don't tend to see spinal myelopathy in people under 50 unless there was an injury.

No, and I've never experienced Lhermitte's sign. However Lhermitte's sign only happens if there's a lesion above a certain level on your cervical area.

And no. I've never broken a bone or missed school or work due to injury.

My mom said "To their eyes you are an anomaly. They may use you and dub a new type of symptom.. They'll call it Alaina disease" ... my mom has my sense of humor. As in, she jokes when I would joke lol.

Quote from: Alainaluvsu on July 19, 2014, 11:04:35 PM
No, and I've never experienced Lhermitte's sign. However Lhermitte's sign only happens if there's a lesion above a certain level on your cervical area.

And no. I've never broken a bone or missed school or work due to injury.

My mom said "To their eyes you are an anomaly. They may use you and dub a new type of symptom.. They'll call it Alaina disease" ... my mom has my sense of humor. As in, she jokes when I would joke lol.

Definitely an odd course. Keeping my fingers and toes crossed for some good news from you!

When I saw this thread and saw it was you I read it all, though I am a lurker more than a poster so you prob won't know me, back a few years ago when I was coming to terms with myself you really helped me a lot, even though you didn't know it . I won't repeat everyone else but keep it simple so.

Good luck. I really do hope it works out OK.

An update:

Last night I could stand on my weak leg, but my balance was still VERY bad when trying to walk and need a walker to do so. The spasms have nearly gone away. I haven't tried to stand yet, my legs tend to be really weak when I just wake up. Maybe this is the end? I hope not, until they figure this out lol. Because I know it's just going to come back worse, like it always does...

Glad to hear you're improving, but I'm worried that they've yet to work out what's happening.

Wishing you continued improvement, and an actual diagnosis.

Hugs,
Luna

I saw a neurologist from Tulane (they have a great neuro team). She said something was found in my spine as well (lumbar area). She's not sure what is what at this point in either my brain or my spine. The bones in my spine look fine, however, so it's not something simple like a pinched nerve, stenosis, or a disk problem. She said neither indicate MS though. She wants me to get another MRI on my brain and a spinal tap. That'll be tomorrow.

They're scratching their heads. Hopefully the spine tap will say something. I moved a bit on my brain MRI, so who knows what that was about

My right leg is still weaker than the left. Knee reflexes are there, but not ankle. Babinski reflex has gone away (at least on my left foot). It's all very strange.

Still thinking of you Sis! 

Hang in there!

I think I know what you need... More estrogen!!!! ;-). Feel better sweetie, you're an inspiration!

Quote from: Alainaluvsu on July 19, 2014, 11:04:35 PMMy mom said "To their eyes you are an anomaly. They may use you and dub a new type of symptom.. They'll call it Alaina disease" ... my mom has my sense of humor. As in, she jokes when I would joke lol.

Well it seems like your mom is supportive of you right now. That's a good thing! If I lived a little closer, I'd totally visit you in the hospital. I have health problems myself and have my own ->-bleeped-<-ty days, lots of people do. Hang in there! 

Quote from: Christine Eryn on July 20, 2014, 01:08:25 PM
Well it seems like your mom is supportive of you right now. That's a good thing! If I lived a little closer, I'd totally visit you in the hospital. I have health problems myself and have my own ->-bleeped-<-ty days, lots of people do. Hang in there! 

Well thanks

My mom is the best.

Quote from: HeatherR on July 20, 2014, 12:13:17 PM
I think I know what you need... More estrogen!!!! ;-). Feel better sweetie, you're an inspiration!

I'm sure every medical professional in this building thinks differently lol. My E has tested over 1,000 in every test I've had for well over a year.

Quote from: Alainaluvsu on July 20, 2014, 01:24:17 PM
Well thanks

My mom is the best.

I'm sure every medical professional in this building thinks differently lol. My E has tested over 1,000 in every test I've had for well over a year.

what's for dinner

Alaina, I am so relieved you went to the hospital. I know being poked and prodded is a pain and I understand you dysphoria makes it so much worse. You are doing the right thing and we are all concerned about your health. Hang in there.