I'm not attached to my body

[gcvmom]

I'm not really trying to make light of your situation -- please know that!

Did they ever look at vitamin deficiencies? I ask because when I google midline cerebellar atrophy I got some info on neurological problems which, in absence of a lesion or tumor, or a genetic disorder, can be the result of a variety of vitamin deficiencies due to any number of conditions.

http://neuropathology-web.org/chapter8/chapter8Nutritional.html

Also this:

http://neuro.psychiatryonline.org/article.aspx?articleid=101899

Was it you who was contacting NIH to see if you could get additional help?

 

[flutterbee]

I know you're not making light of the situation. When I get like this a little levity is really appreciated to bring me back to earth. I run the gamut some days of being scared, frustrated, angry, defeated, acceptance and determination. Yesterday was defeated, mostly. I actually spent a little while thinking about who's body I would like to have...running the list of celebrities through my head..... I also thought about all the pills I have...not that I want to die, because I dont...I just don't want to live like this anymore. I would never do anything like that - my kids need me. But, I did think about all the options I have, I guess you can say.

I've looked into that, too. The neurologist noted in an off-handed way a small B-12 and folic acid deficiency. It wasn't noted in a way that was like...oh we need to do something about this. My mom had gone and gotten me some B vitamins, but it was a B complex and I need to get just regular ol' B-12 and I also need to get some folic acid. She's coming up tomorrow, so I'll have her do it then. I'm pretty worthless right now as far as going anywhere.

Also read that the perjunke cells, that make up the cerebellum, are extremely sensitive. I had severe blockages for a long time and had significant cognitive impact before the heart attack which tells me that I wasn't getting enough oxygen to the brain...so that's another theory. And yet another is that I had a small stroke after the 2nd heart cath.

I'm not an alcoholic, I don't huff ethanol and I don't take lithium so those are all out (possible reasons for the atrophy).

Plus, things like MS could possibly be related. So, it all boils down to - right now - Which I wouldn't have a problem with if the docs were actually trying to determine a reason and determine how much of an effect all this is playing, ya know?

It is me that they are trying to get into the NIH. The GP sent in the info and we waited the obligatory 6 weeks and when we didn't hear anything they spent a week calling them. Seems they never received the info. So, they sent it again - certified - and I *just* got a letter dated Oct 28 that they received my info, would take 6 weeks to review it and would notify me of their decision by mail.

Thank you for taking the time to look this stuff up. It means a lot.

 

[gcvmom]

It really didn't take any time at all -- so no biggie. When my oldest got sick with Crohn's, I became very adept at researching medical issues on the web I know which sites are legit, which are not. I know that you have to gather a lot of info and compare and ask the right questions. And most of all, you have to persist, and insist, and downright DEMAND when you aren't getting the care you need and deserve from your doctors. When one doctor wanted to stretch my son's scarred intestine open and I found out he'd never done this procedure before, I high-tailed it to the nearest expert in the field, even though it meant a 50 mile drive one way. We ended up sparing him of this potentially dangerous procedure and with some patience and the right medications with the right doctor, got him into remission over time and avoided surgery.

Same thing with husband. He had bizarre neurolgical symptoms for five years. I researched his issues and came up with some plausible causes then dragged his but into his GP to pose the questions. That got us referred back to some specialists which got more tests with some more expert eyes on the results and then voila! We finally had an answer and could move forward with treatment.

It's frustrating. It's insanely time-consuming. But with complicated problems you HAVE to keep pushing or the system will just take the easy way out and try to bandaid your problem instead of fixing it.

I'd be on the phone on day 43 if I hadn't heard back from anyone yet about this at NIH. Get names. Get phone numbers. Get email addresses.

Hang in there! December 9th will be here before you know it! (Yikes, that's difficult child 2's birthday )

 

[Big Bad Kitty]

Hey sweetie.

OK, a little history on my mom. When I was in 5th grade she was diagnosis'd with an inner ear infection. A year later they said no, it's TMJ syndrome. She had to get plastic thingies to wear in her mouth at night to align her jaw. A couple years after that, she was told that she never had TMJ, she has MS. For over 20 years she was being treated for the symptoms of MS. She began to get migraines (never had them before) and then was diagnosis'd with CFS and FM. Yet every time they had a new MS treatment out, it would not work on her.

A couple years ago she saw a new neuro who ordered an MRI of her brain. When he saw it, he asked for copies of previous MRIs. He studied those and asked her who diagnosis'd her with MS, because from what he can see, she does not have it. He took another set of MRIs and a CT scan and found that she had Chiari syndrome (brain malformation). She had brain surgery.

I wish I could say she lived happily ever after, but I can't. She still gets migraines. She gets tired. But what she does not get is what she used to call her "MS attacks", where she needed a cane to walk or where an entire one side of her body went numb. My point is that she had recieved countless MRIs anc CT scans over the years, and it took OVER 20 YEARS for someone to catch the brain malformation.

I wonder if something like that...whether it is Chiari, or ANY oversight in one of your tests somewhere...could be an issue for you?

You are SO in my prayers. I mean, SOOOOOO in my prayers.

 

[gcvmom]

What BBK said reinforces my belief that if you've got something complicated that no one can figure out, it's worth it to go to a top notch facility. Most of the larger centers take a wide variety of insurance plans. Being in Ohio, the Cleveland Clinic comes to mind as a place I'd tell you to try if you haven't already.

http://my.clevelandclinic.org/neurological_institute/disorders.aspx

 

[flutterbee]

BBK, thanks for sharing your mom's story. I really feel that whatever is going on is just screaming at them and they're not seeing it. I told my GP the same thing. I do think they probably have all the info they need and they're just not seeing it. It's why I get so frustrated.

Gcvmom - I do the research, too. I've logged hundreds - thousands of hours - into this. I've just gotten to the point where I can't do it anymore and I need the doctors to be doing it for me.

 

[flutterbee]

Gcvmom - The Cleveland Clinic is our next move if the NIH says no. The Mayo Clinic has said they want to see me, but they don't contract with my insurance and it would take months to try to see if my insurance would go for it.

 

[Star*]

Heather,

I know this is probably way out there for anyone, but do you have anyone locally that is gifted in Chineese herbology and accupuncture? Just throwing that though/suggestion out there for you because a lot of these doctors are VERY good at getting to the crux of an illness.

FWIW - I dont' think you're crazy or depressed. I think you're sick, tired and angry from being sick and tired. Df lives with that every day and some days it's nearly impossible for me to watch him sit, or try to walk or stand - I get furious because you would think that if they can grow a baby in a petrie dish SOMEONE could fix his bad and knees.

Hugs
No I'm not suggesting a witch doctor - I'm very serious.

 

[KTMom91]

There is something to be said for the alternative remedies...our insurance actually had acupuncturists listed! I'm seriously considering making an appointment for Hubby...he was in a car accident several years ago and still has a lot of pain in his shoulder.

 

[Big Bad Kitty]

Funny you mention that Star, at one point my aunt had a fundraiser to earn enough money to send my mom to FL to see a renowned acupuncturist. This was years ago; Copper was only a baby.

It did help her symptoms for a time, I remember.

Heather, you are always in my prayers.

 

[flutterbee]

I would love to try acupuncture. If I had the money.

Heck, I'd eat chicken lips and frog tails if it would help.

Thank you for the support ladies. It's been a very...hmmm...disconcerting couple of days.

 

[Steely]

Glad to see you back in your body We missed you.

What about that other diagnosis you thought it was, that you posted about a couple of months ago? For the life of me I can't remember the name of it, but you were pretty sure that was the reason this was all happening.

Many prayers and hugs being sent your way.

 

[flutterbee]

That was Cushing's. According to the endocrinologist that's a no, although he said I should be tested again in 6 months once all of the steroids (injected and oral) are out of my body. Fat chance of that happening unless they can find another way to control the pain.

The thing is, Cushing's can be cyclical so one negative doesn't mean no 100% which he even said during the appointment. So, it's something we have to keep an open eye on.

Even if that is a consideration, I don't think it would be the only thing. And it could even be brought about by the steroids - I've had 6 steroid injections since March, plus oral steroids here and there.

 

[lovemysons]

Hi Heather,
Thinking of you and hoping your feeling better today.

Hugs and care,
Tammy