Hi everyone.

OK, I'm just feeling a little picked on here. That thread about the MDA clinics got me hopeful that when they finally got my clinic scheduled it would be a good thorough going over. My doc sent orders for a neuromuscular clinic and SFEMG. Here's how it's going so far.

4/3 - Lot's of blood work that I knew would take some time, but geez! As of Friday, there's still one test out there SOMEWHERE that they are trying to track down so I know nothing yet. (Reminds me of my first anti-body test that got lost, and HEY - I just figured out that that fool neuro had the test redone AFTER I was on Mestinon for 3 weeks!)

4/6 - orders first faxed over.
4/9 - I called to see if we could schedule - they don't have the fax
I call neuro's office - they refax
4/10 - I call to see if we can schedule - recept says they have fax, but
scheduling says they don't. It's "in transit"
4/13 - I call to see if fax has made it to scheduling - get transferred to
the duty nurse and have to leave a voice mail.
4/15 - no call from nurse - call again - leave another voice mail
4/16 - call neuro's office to get help from their end - leave a vm
4/17 - call neuro's office - my doc & her nurse are out
4/20 - duty nurse calls - explains they have lost both faxes somehow and
she will call neuro's office to babysit it through (YAY!) Says I
should be called by scheduling within 2 days
- neuro's office calls to say they connected and it should be rolling
4/23 - called scheduling, had to leave a vm
4/24 - scheduling calls - I'm set for 5/27 appointment (YAY!), but the
appointment is only for a one hour consult - they won't schedule
the SFEMG my doc ordered until/unless the consulting neuro thinks
we need it done (UMPF!)
4/24 - called neuro to tell her they aren't following her orders and see
how she wants to handle that. She's at the hospital, so nurse
will let her know, but she thinks we'll do it MDA's way (UMPF
again!)

Everything seems to go like this! I understand the MDA neuro will want to do an exam and take a history, but if my doc wants the SFEMG, what's the hold up? IF the MDA neuro wants it, she only does them every other Tues. I'm told, so it will be at least one more week, maybe two.

Lord, I've got a job I'm unable to physically go to. They've been great to let me do what I can from here, but given that I supervise a department there's a whole chunk of my job I can't do from here. I don't know how long my boss can carry on with no clue as to when I might be back, if I'll be able to come back, if I'm gonna drop dead, or what.

The economy is so uncertain now and he's already freaked about the drop in sales and antsy about a possible need to lay people off. If he were like most owners he would have told me he needs to let me go and get someone that can be there to help by now!

I know too that that visit probably isn't gonna give me any answers - just a list of more tests to be done and scheduled one little bit at a time so they can see results before the next one - with varying periods of time to be wasted before I can be fit in......

In my mind I keep hearing "tick tick tick". It's been since the end of January that this bout hit me, it's gonna be at least the end of May before I have the first round of tests (except the lost bloodwork) done, then on to who knows???? To make my frustration level even higher - I've been through this twice before! I got a dx on one thing and no answer on the other - who knows at this point! Maybe it's really all just one thing rolled together!

On the one hand I hope it all just resolves to a point where I can function again so I can get on with my life - forget the dx.

But on the other, I know it's just gonna happen again. Maybe if I get the dx this time I won't have to go through all this frustration as well as the effects of the illness, conditions...

I'm about on my last nerve as they say, and trying hard not to lose it.

AND, I have a new worry to add. My husband. His brain injury of last year isn't all the way healed and he is starting to show signs that all this stress may be aggravating that. He was so depressed at one point that he spent 3 days straight pretty much sitting in a chair. No appetite, no energy. His memory is slipping again, and his eyes look funny to me. I told him he needs to go to the doctor and tell them what's going on and get something for depression, but he got upset that I think he needs help. Irrational behavior can be a part of TBI, and although that hasn't been a big problem with him (thank God) there are some subtle signs. I've posted on the TBI forum, looking for some direction from those with that experience so hopefully...

I just don't have the strength - physically, emotionally, or mentally, right now to even take care of myself! I don't know how much I can possibly do to help him through this too.

I thought I might run away to my Mommy's for awhile, but 1) I can't monitor him, 2) I think that would hurt him to think I don't think he can take care of me (I did this once on my first bout and he was very hurt), and 3) I can't work there - no fax, internet access, printer, etc. - so we'd have even less money coming in and I think it would jepardize my job even more.

UUUGGGGHHHH! I just can't see how to deal with all this!

Sorry for the dumping, but obviously I can't talk to him about this. I need to go sit in a bar - not to drink - just to use the bartender for a phsychiatrist like you see on tv!

Talk to you all later, and I'll get back to my old self before I post again. Thanks for letting me unload a little.

Oh Becky honey, I'm so sorry you're going through all this right now. I wish I were close enough to give you a hug and a shoulder to cry on. Maybe just letting it out will help a little.

I know it's frustrating with all the waiting and this doctor says one thing and another doctor says something else.

It always seems for me that when my neuro wants me to go to another doctor for a test, I have to go for a consult and then have the test. They typically don't just do the test because your doctor wants it done. I know that's frustrating, actually it makes me mad, but it just seems to be how it's done.

As for your husband, is there anyway you could get him to go to the doctor because of his eyes, then maybe since he was there the doctor would see something or he would mention the other problems.

Or do you think that maybe he got mad because he's scared. I'm sure his head is spinning right now with all of this too. He wants to be there to take care of you, maybe he's scared that if he finds out what's going on with him he wont be able to do that.

I'm sure none of this helps, I just wish I could.

I hope this all gets straightened out fast for you.

Kristie

Hey Becky! You are NOT whining - you are frustrated because you are getting the run a round.....that whole "Hurry up and wait" thing drives me CRAZY!

Sounds like the MDA clinic has some really serious issues........this darn disease is difficult enough without getting blown off or ignored.....I'm surprised you've been this patient this long......... I would be hopping mad!

As for your mom and hubby- is there ANY way she can come down and help you out? I had the same problem with mine, but now he is comfy with my mom being here - in fact we are quite happy with our little arrangement......

I am so sorry to hear you are going through so much right now. It will get better - @ least that is what i tell myself when I feel down.......got any chocolate handy? Wonderful scented candles? Good wine? I'd try them all!

I hope your hubby agrees to see a Dr.! TBI is such a scary thing! I truly don;t know how you keep it all together, hon! You are an inspiration for ALL of us!

THis is the prefect place to VENT, cuz' we all know what you are going though - OK - most of it!

Missed hearing from you! Hang in there! I'm gonna do some serious paying tonight!

You need a BREAK! If you ever come to San Antonio, I've got a room ready! We do have alot of dogs, bt they are all lovers and wouldn't hurt a flea!

Big, big hugs!
Erin

Erin & Kristie,

Thanks for the kind thoughts and understanding. I can deal with the frustration for a while, but it's really piling up now. Hopefully I will get the blood results back today.

Kristie, I know you are going through the same kind of frustration with tests and results. I sure hope your MS neuro can help you out with that since that's your earliest appointment.

Erin - I LOVE dogs, what kinds do you have? I have a 7 mo. old chocolate lab my husband got me for Christmas.

Last year, a couple of weeks before his accident I lost my beloved Heidi dog after 13 years with her- she was a german shorthair that I had whelped and picked from the litter. She was my guardian angel - could've been a service dog. She always knew when I was having trouble, sometimes before I did, and she would stick to me like glue.

She saved me from going into crisis once. Kept nudging me until I got mad and my adrenalin kicked in. That's when I realized I was barely breathing so I signaled someone to get me a Mestinon real quick. She didn't leave my side until I started breathing right again - she was so awesome!

I didn't start grieving her until toward the end of the year because of Steve's (my hubby) injuries, so he decided it was time to get me another dog to love. It was a good move.

Belladonna has been good therapy for me. The only problem is with her being a puppy (BIG PUPPY) she still takes a lot of work to teach her not to bite, tear up shoes, jump on counters, bite (did I mention that already? - it warrants two mentions at least!). But she's been very intertaining and is starting to come around just to give me loves. She likes to crawl up in my lap to chew her toys, but she's gotten so big !

She's actually very smart and is learning pretty easily - the key is the treats ! Quite the chow hound. It's just this nibbling thing I don't seem to be able to break her of yet.

I hope I can get San Antonio way some day. That would be a lot of fun! I also want to get up to Oregon - Kristie, your area is so pretty!
You're both welcome anytime in Denver too. We have a guest room all set up!
Hey, since I'm kinda 1/2 way in the middle of you two, maybe we could set something up to all meet here someday! We have 3 acres and a motor home one family could stay in.

Anyway, I'll be alright one way or another. My mom won't come up right now because she isn't feeling well and doesn't want to chance giving me anything more to deal with. Besides, I think she just can't handle seeing me like this. She was with us during my first crash in 1997 and saw me about like this and I think it was just too much for her. She's what she calls an "emotional coward".

I decided I'm going to go to the doctor with Steve Tuesday and whether he likes it or not, I'm going to let the doctor know my observations. Maybe he can make Steve understand how damaging stress and depression can be for him. I'm gonna try to get an appt. for myself around the same time to have them culture this rash I have to see if it is related to shingles. It's been suggested on another forum that if the shingles virus has gone systemic on me it could cause some of these other symptoms I have.

I did have shingles, I know I have a blood test that was positive for the virus in my blood, and this rash LOOKS like shingles, just without the normal excrutiating pain. That's why the doc and dermatologist didn't think shingles, but they weren't sure just exactly what it was - there again, why didn't they culture it months ago when I first asked for that? UUGH!

Anyway, I appreciate the commiserating with me! I'm so glad I found this site and have met wonderful people like you that will listen(read?) and can understand. My family is great, but they have all always looked to me for answers and strength and can't handle it when I'm the one doing the crying, so I try not to let it out on them. I have to be guarded with co-workers for obvious reasons. My best friend lives in Amarillo and she's great to talk to, but she is a big-wig with girl scouts and travels all around the region down there so she's not always available. Sometimes you just gotta get it out! And I appreciate you all letting me do that.

Love to both of you! Please take care and I hope this is a good week for all - Erin you've got IVIG going on right? Hope it gives you the big boost!

That would be so fun to get together some day!

Wow what a dog, I'm sure you miss her very much. But your puppy sounds great too.

I have a 6 year old Saint Bernard German Shepard mix. She's about 100 lbs almost all black with a little white on her chest and paws. Anybody who doesn't know her think she is an overgrown black lab, silly people. A lot of people are intimidated be her too but only until they get to know her, she's so gentle.

The first night we got her we had only been home 30 minutes, I was pregnant with David and it was just me Emily and Molly (the dog) home. When Dan got home Molly wasn't going to let him in the door, she was growling at him. I had to get a Milk Bone and have him feed it to her before she would let him in.

But then he went and got a bowl of cerial and dropped one Cheerio on the floor, Emily picked it up and held it between her thumb and pointer finger and fed it to Molly. She was so gentle Emily laughed because Molly's tongue tickled her fingers.

It's a long story about how we got her, but I will have to tell you some day. Just not right now.

I hope you have a good week Becky, Love ya too. Good luck at the doctors, please let me know how that goes.

Talk to you later.
Kristie

It will get better, honey! It really will! Just try and take a DEEP breath and realize there are certain things we cannot control @ all!

I have 3 poms, 1 chihuahua and 1 pitbull. They are all rescues. They truly are amazing! My chihuahua stays by my side on my "bad" days and won;t let anyone near me! He is all of 4 lbs, but fierce when anyone tries to touch me! It is sooooo cute!

I know what you mean about your mom. My mom is the same way! The nurses actually made her leave the room when they started my PICC line b/c she was making them nervous. It was awful! I still don't let her come up when I have my plasma exchange b/x she would pass out if she saw me with that thing hanging out of my neck - too gruesome........

I really hope you can get your hubby to the Dr.! Men are just so stubborn!

We SHOULD get together! IT would be a BLAST! Now we just have to pick a time when we are all up to it! That may take a while! LOL

Hang in there honey!

Love ya too!
Erin

Becky, It's quite frustrating going through the diagnostic process. It sounds like, however, that they are actually doing it well. Maybe not fast enough for you but that's how things go in medicine. It's different in Europe. They do things much more quickly than here in the U.S. Of course, some people would argue with that! Especially some in the U.K.

Do you have short-term or long-term disability insurance through work? If not, look into that. It can give you a bit of an umbrella in case you have to take a leave until you get drugs!

I'm sorry about your husband. TBI is a tough thing to deal with. If he is having new symptoms, he has to be seen. As I'm sure you know, things can change. And a new symptom may not even be related to the TBI. If he has nerve damage of any kind, he may benefit from taking some over-the-counter drugs like B12. I hope you can have a conversation with his doctor(s) about all this. I hope he keeps getting better.

I know it's scary right now, the way the economy is. You can only do what you can do! You KNOW that stress is the enemy of MG so try to just handle what's going on or talk to someone about it (like an expert in savings, etc.).

It'll help having a diagnosis, and drugs, but all the other problems will still be there. The best thing I ever did to cope with all my crap was to get a psychologist. Having as many coping skills as possible helps a lot. It still doesn't stop moments like the one you're having when you want to run away from home! I totally understand that. It sucks having so much going on.

And you named your dog after a plant that could kill you?!!!! Belladonna, really?

I hope you got some more news and test results.

Annie

Thanks Annie.
Yes, but if you check on Belladonna there are elements of it that are used to heal the heart. I guess that's what I had in mind when her name popped into my head! We usually just call her Bella (or dummy).

I am getting to the point where I may go see another physchologist. They really do help and have seen them before. When the anti depressants aren't enough anymore, at that lasts for a week or more is when I usually start heading that direction.

Becky
I can't get any kind of disability insurance, mostly because of the condition of my neck. I've tried and they laugh at me! Were you able to get some even with the MG diagnosis? I would think that would be one that would leave you out of it too.

We have a muscle car we are planning to sell to help with expenses. I think I can work all that out - it's just that I love where I work so much! If I am going to be able to return to work anywhere, that's where I want it to be.

It'll all work out, I'm sure. I will be going to Steve's appointment tomorrow. I have noticed a couple of things I think the doc should know that I'm not sure Steve is aware of - yet. I'll have to tell him what I want to bring up to the doc before we go. I just don't want to mention anything too early, considering he's already upset by other things.

How are you doing? Have you had your appts. yet? PM me if you'd like.

Take care of yourself, Annie. We all love you and you do great things for us here!

Hi Becky,

so sorry you are going through all this at the moment!! It must be so hard. I have just myself to look after, I can't imagine having to cope with looking out for someone else when you are so sick.

I'm glad you can come here and talk, take care, I wish I could say more, but cant really talk from experience,
take care
Kate

Thanks, Kate. I'm more worried about you - all fluey and alone with MG and the other problems you've been having!

We'll be fine. We both saw the PCP in the last 2 days and he is wonderful. He has prescribed something to help my honey through all this stress and depression, and is addressing my problems from the non-neuro end, just in case all these test come up empty again.

Now, you get to bed! Drink lots of fluids and take care of yourself!

Love to you!
Becky