[sam71]

I am so very frustrated and not sure what to do. I have my 1st neuro appt on Friday (4 more days!).

I don't have a dx...other then a rhemy telling me all my sx are consistent with MS and her referring me on to the neuro.

The last week i've had a tingling (off and on) that goes down my spine. It feels like sand trickling down the inside of my spinal column. I had the sensation for what felt like ALL night last night. I barely slept. I'm really just freaked out and sad and overwhelmed. I've read that others have had the same spine sensation.(have I mentioned how much I love this group!?!?)

I just don't know what I should do. 4 days doesn't seem like a long time to wait...but it also seems like a freaking lifetime!

I had to leave work yesterday because of a dizzy spell. i just feel so horrible all the time...before I felt very hopeful ("ok, if this is ms this is just an exacerbation...I'll get through this and be fine. and deal with whatever comes next"). NOW i just want to cry all the time. I feel like a shell of myself. I tried to go shopping over the weekend. I was so off balance, I had to grab a cart just to help steady myself. I feel like i'm shrinking away inside. No one around me can begin to understand what I feel. One "friend" has basically accused me of making stuff up...and even suggested that "maybe it's JUST a brain tumor!" (needless to say, I've quickly decided that is not the type of person I need in my life right now!)

I''m sorry for sounding like such a Negative Nellie...I'm just really scared and lost and not sure what I should be doing.

Thanks for allowing me to vent. Any suggestions you have are truly appreciated.

[Snoopy]

Hi sam71,

Abnormal sensations are known as Paresthesias (tingling, numbness) . A few causes of Paresthesias: back problems, B-12 deficiency, Diabetes, Thyroid and of course, MS (there are more causes).

http://www.nlm.nih.gov/medlineplus/e...cle/003206.htm

[ANNagain]

Hang on Sam-

Just a few days to go and you will have treatment of symptoms at the very least.

I wish you well and will be looking for your follow up.
ANN

[sam71]

Thank you for the responses.

The rheumy did a bunch of blood work to rule out the vit-D, thyroid and other things.

I called the neuro. They moved my appointment to Thursday. (it was the best they could do). The receptionist told me that everything I told her was consistent with what "other" MS patients say. That makes me feel some what better. However, it's just more than a little freaky to have all these strange new things going on with my body.

I know I may not have any more answers come Thursday...but at least I'll have seen a doctor and will hopefully gain more understanding on what's happening.

[SallyC]

Good luck Thursday Sam!!
Please let us know what the Neuro says.

[Kitty]

It's all very scary at first. It was for all of us (I feel comfortable grouping us all together for that!). And it's hard to wait....and wait.....and wait. I'm so glad they moved your appointment up so you can get some answers.

MS isn't easy to diagnose. It's more of an elimination of other conditions to narrow it down to MS. And that can take some time. It sounds like you've got a good doctor who's working to figure this out. It's still hard to wait, though.

When I was waiting for my diagnosis I actually thought I had a brain tumor. My most prevalent symptom was severe double vision. And it lasted for about six months! I did alot of self-diagnosing on the Internet and let me just say that is NOT a good idea! By the time I heard the Neuro say "you have MS" I was thrilled! He was a little taken aback by my reaction but when you're convinced you have a brain tumor hearing "you have MS" was music to my ears!

I hope you'll post again after your appointment and let us know what the doctor said. You're going to be fine......

[sam71]

Originally Posted by Kitty

It's all very scary at first. It was for all of us (I feel comfortable grouping us all together for that!). And it's hard to wait....and wait.....and wait. I'm so glad they moved your appointment up so you can get some answers.

MS isn't easy to diagnose. It's more of an elimination of other conditions to narrow it down to MS. And that can take some time. It sounds like you've got a good doctor who's working to figure this out. It's still hard to wait, though.

When I was waiting for my diagnosis I actually thought I had a brain tumor. My most prevalent symptom was severe double vision. And it lasted for about six months! I did alot of self-diagnosing on the Internet and let me just say that is NOT a good idea! By the time I heard the Neuro say "you have MS" I was thrilled! He was a little taken aback by my reaction but when you're convinced you have a brain tumor hearing "you have MS" was music to my ears!

I hope you'll post again after your appointment and let us know what the doctor said. You're going to be fine......

Thank you SO much! I will most certainly let you know what the doctor says. I have a pretty extensive history of symptoms and I have them all complied and written up for the neuro to see. I'm hoping that will help her narrow things down a bit. I also had a bunch of labs done at the beginning of the month and also at the end of the summer...(again, hoping it will speed things along).

Also, A HUGE THANK YOU for the reassurance that it's going to be ok!!

[tkrik]

How did your appt. go today? I hope all went well. Check in when you can.

When I read your post I was thinking maybe Lhermitte's. To me, it has never felt like sand, more like tingling and shock sensations. It's not comfortable.

[sam71]

Thanks for checking on me. I just got home...(long day). I guess I am officially in "Limbo-Land". I really liked the neuro and she was very thorough and listened to all I had to say. She sat down with me for a solid hour...it was nice not to feel like she was trying to push me out the door.

She said that some of my symptoms are consistent with MS and others are not. She ordered even more blood work. She thinks some of my experience maybe related to low vit-D. I've had low vit-D levels in a past lab...so she wanted to run it again (the previous test was over 8 months old). She said it may explain some of my experience...but that there is definitely something neurological also going on.

She also ordered a brain/spine MRI, and put me on what she described as an "old-school" neuropathic pain med to help with the tingling/pins and needles and the like. (I forget the name, and it's over at the pharmacy now).

She did all the reflex tests and such. I asked her how I was doing and she said, "mostly ok". (??????) She wouldn't really give me a hint of what she was thinking. She said that she wasn't going to start guessing until she had all the information from the tests to work from. (as frustrating as that is, it's actually the best approach...even though i just want to know!!).

So, I now I wait. They will get the ball rolling for the MRI and then I go see her again on March 15th to see what all the results are.

Thanks again, everyone!! I truly appreciate you being here!!

[ANNagain]

Sam,

It's good that you found a neuro that listens to you and spent so much time w you. And you see her again in 3 weeks!

She said that there is definitely something neuro going on.

This is good, Sam. I am glad you got some symptomatic treatment and are on your way to a diagnosis.

ANN