Not sure where I fit in...

[Sewwhat39]

I hope it's okay to use this board for help and insight. I'm not really sure where I fit. I'm currently dx with Demyelinating Disease Of Central Nervous System, Unspecified. Nice catch all dx. I have been to multiple neurologists, rhuematologists, neuro-opthologist, etc. I've been in the 'limbo' area for over 5 years, but it's been in the last year that i've had some scary escalation of symptoms.

Most of my blood work, spinal tap included, are normal, with the exception of my sed rate. It's been consistently between 30-50 for over 5 years now. It never goes lower, it peaked higher once, but I didn't get that reading.

I have been dx with optic neurotis, in my left eye. That eye hasn't been 'normal' since. Luckily my right eye can compensate for now. I have been 'numb and tingly' since July of 2011. The fatigue, well I just try and muddle through that the best I can. Meds have helped.

As for Meds, I take enough in the morning that I shouldn't be hungry for lunch. I'm on :
Estrodial (hysterectomy at 26, now 41)
Cymbalta (anxiety, dx 7 yrs ago, runs in family)
Claritin (seasonal allergies)
Gabpentin (300mg, 3-4 x a day)
Nuvigil
and now, Imuran

Sooo...my main Neuro says, I have that Demyelinating Disease and that it isn't MS...yet. I have abnormal MRI of my brain, spine is clear. She wants to follow up with yearly MRI's for now and blood work weekly (for the imuran). She isn't ruling out MS, just says I don't meet the criteria as of now.

I have a main question, about my spinal tap last year. It was done in office, no xray, and she 'tapped' me at least 3 times. I ended up with a spinal headache, and when I went for the blood patch, the radiologist said I looked like a 'pincushion'. Would any of that effect the test results? The only abnormality in her results were something else that pointed to systemic inflammation. (already got that with the sed rate results).

Is this the right place to ask? is it ok to ask here? I'm just so confused about everything. would be helpful if my brain would just cooperate....

[gomer]

Dear so confused,,,(oops Sewwhat39)

YES! you are in a right/good place for your situation. MS world is a great place for both information/education and SUPPORT!

Sorry to hear you are so confused and in limbo. Sad to say its very common instead of the exception. I demanded my LP be done under flourascope and was done in a hospital. MY back is not so great, problems getting er done, but no post LP problems. They ended up having to knock me out completely after several failed attempts.

I doubt them having to poke/drill multiple wells would affect the test results, however I am sure it impacted you. Even with multiple taps to get it, my LP supported my MS Dx.

Hang in there, took me 45 years to learn my diplopia was due to MS. Took me 25 years after being sent to shrinks for complaining about dead man walking fatigue etc etc. before any of the doctor's with ADD I had to deal with bothered listening and testing. (ADD = Assume & Dismiss Disorder, exclusive to doctors)

Gomer Sir Falls-a-lot

[22cyclist]

First, it is very OK to post here, in fact this is the best place to post, but you can post anywhere on the board. You are welcome here.

Second, the traumatic tap should not affect your results as far as the banding goes. I had several taps, some in the office, some very traumatic, and needing blood patches.

I am sorry you are going through this. I am happy they are at least following you, and treating you with something. How are you feeling?

Please feel free to post questions and share. Many of the people in limbo here will be happy to share with you can commiserate I am sure.

Lisa

[Sewwhat39]

Thank you, I appreciate being able to post somewhere. It makes me happy/frustrated/scared/and annoyed all at the same time not have a 'named' dx.

How do I feel? Well, the gabpentin has dulled the shocking sensations enough so that I don't wake up in the middle of the night thinking I an being electrocuted. I used to have terrible pain(for several years), now they are thinking it was 'neuropathic'? Whatever it was, it's been replaced by numbness, tingling, and maybe starting with some stiffness.
I have foot drop on my left side, so I have an orthotic brace from the doc. I'm tired a lot, and have trouble concentrating. I try to stay positive, I'm a pretty positive person in general.

I try to laugh at myself. I joke that at least we have wood floors so I can slide around as opposed to limping. My typing is hilarious, so I thank the good Lord for spell check. I scrapbook...sometimes I can even forget for a while....when I'm creative. My handwriting is worse than my typing (no spell check). I'm left handed, and most of my symptoms are left side. I've burned myself on my broiler and not felt it. I wear a glove now to make sure I don't burn. I'm 'allergic' to the sun, so I have to stay inside or covered in spf clothing. I tell my kids I'm really a vampire.

I started yoga, I do ok balancing on my right foot...my left? I made my teacher laugh because of how bad the difference was. It was all in good spirits, not meant to be mean. I really think she thought I was 'faking' the imbalance.

I have too many doctors, a very supportive husband whom I so tired of burdening. I have a 17 year old worrier daughter that is going into nursing, because of this. I have a 22 year old daughter that came home after graduating from college and chose an internship here to move back in. And I have a very sweet 10 lb Min pin that listens to all my complaining and whining and wants to just cuddle in my lap.

Life is good....dx or not, I know i have something and the docs do too. I try and stay positive. Some days are harder than others.

Thanks for listening. I really mean that. thanks.

[22cyclist]

I have a lot of the same problems. Especially the cognitive problems...thank God for spell check and that no one is timing me. I have tested as moderate cognitive impairment consistent with MS. (BTW-It took me 5 spell checks to get that out, and 1 to get this out.) I can no longer do math.

It make me feel like I wasted my time in an advanced nursing degree, and for sure in all of those trigonometry classes LOL!

I have foot drop on the left, numbness off and on, buzzing, tingling, most of us do. Swallowing problems, speech problems, trigeminal neuralgia on both sides...I am a hot mess.

What I am saying is you are not alone. I also have 2 adult kids, boys. My husband is a surgeon, knew nothing about MS. He used to get in screaming fights with me about where things were in the house before he realized I couldn't help it that I couldn't remember where I put them.

He learned, and is a sweatheart about everything now.

There is a chat for almost everything here too. You might want to check it out. It moves kind of fast, but just jump in where you can, it is good for support.

Take care
Lisa