[coffeegirl]

Okay- this is the second time I've had to re-write this. My computer is giving me issues. Not what I want today!

I currently am dx'd with MAV and an inner ear disorder with severe hearing loss. Lots of strange symptoms- which I've been here before and discussed. Last month at my regular neuro appt the doctor did a bunch of tests on me due to the severe vertigo (has basically ruined my life at this point). The eply manuver and VRT therapy is not helping at all. He told me the tests all were normal. I called the neurotologist the following week trying to figure out what to do next. The nurse told me that they just received the test results and that they 'found something wrong' when they did the tests. grrr!!!! No wonder the regular neuro ordered a neuropsychological exam soon then the other neuro referred me to a dizzy clinic on top of things. Not sure what on earth is going on.

On top of things the specialty neuro put me on a very high dose of valium and then balcofen. It is to reduce the vertigo/nausea. I have had some days where I'm able to function but my walk/gait has become so abnormal that I appear to be 'drunk' and so unsteady that my family members have to hold me up at times so I won't fall and hurt myself. I'm afraid to drive or go up/down the stairs. Scared to death. I've had some very bad falls over the summer. I no longer walk 'normal'. Every day it gets worse.

As for my memory and cognative function: It is a joke. Not there at all. My hubby thinks I'm just losing it or faking it to get attention. I also have ADHD- and he thinks I'm using that as an excuse for some of the really 'odd' things that I've recently done. Which- is not the reason. I have no clue why I have been doing some really odd things- it is like I just 'do not think'- brain fog so severe that I am not able to even concentrate or have any type of thinking process.

What is wrong? Is this MS?

Is this why they prescribed the Balcofen?

Please help.

Coffeegirl

[Erin524]

they're giving you baclofen AND valium to treat vertigo? Why?

One of the side effects of both drugs is dizziness.

Valium side effects also list impaired motor functions, impaired coordination, and impaired balance.

They're both muscle relaxers. Spasticity can get really nasty and painful sometimes.

I'm taking both medications, and yeah...I've experienced the impaired balance and the dizziness from it. At least it's helping the spasticity that I have, but the dizzies and drunk walking are kind of annoying.

If I were you, I'd call the doctors back and ask them just why they're treating you with valium and baclofen.

[Dejibo]

I would think Antivert or something similar would be more appropriate for vertigo. Also some PT can help greatly.

a Valium/Baclofen cocktail would be way low on my list of meds to chose for that. both actually can cause dizzyness. I get bed spins on Valium. Both are muscle relaxers and in MS spasms are common. Valium can also be used for anxiety or to help you sleep. putting both together would knock down a a small villiage. please be careful.

I am sorry that your husband is being less than supportive. it is hard enough being sick, and trying to figure out what the heckpie is going on, without friends and relatives adding to the struggle. Perhaps you can sit down during a quiet time with your husband and explain to him that you ARE trying, but that you truly dont feel well. Ask him to help you figure out what could be causing this. maybe help with internet research, or help around the house giving you time to research it. If he gives you attitude, then it may be time to have a stronger talk. I hate when these folks dont want to understand.

NO ONE wants to be sick!

btw, what is MAV? I have holes in my head and cant riddle it out.

[Kitty]

Originally Posted by Dejibo

btw, what is MAV? I have holes in my head and cant riddle it out.

I think it's Migraine Associated Vertigo.....but I could be wrong. Coffeegirl will have to confirm if my guess is correct.

I agree with the others....Valium and Baclofen together cannot be beneficial to anyone needing to be in a "functional" state.

If you're not satisfied with the care you're receiving from your Neuro and/or your PCP maybe you could start searching for a new one.

Not as easy of a fix with your DH......I'm so sorry he's not being supportive during this time. This is when you really need his understanding. I've not experienced the pain of a loved one not believing me or thinking I was "putting on a show" for attention. I do know it would hurt, though, and I hope he gets on board soon and stops the hurtful behavior.

Here's a

[coffeegirl]

MAV- Yes, it is migraine associated vertigo. sorry I didn't explain that.

wow... I'm so glad I posted here!! ugh!!! This journey has been complete ___! The two neuros I'm currently under: regular neuro and neurotologist: are the two best in my city. Sad huh!? The dizzy clinic they are sending me to is one of the twelve in the US. Not sure what on earth to think at this moment.

One: When the regular neuro did the three tests at my regular check up in July: Got lied to about the results. How did I find out: A nurse at the specialists clinic accidentally told me over the phone when I inquired 'why am I being sent to the dizzy clinic?" "According to the notes/chart they found something wrong with you in one of the tests"- I asked what it was/etc. "I need to go. Call back or the other clinic to set up an appt."- click! GRRRrrr

Every time I have asked all three clinics what is going on: NO ANSWERS. Regular neuro told me in July that I was to have a 'memory test' next month. Instead I discovered yesterday it is a 'neurological exam'; a four hour one. When I did research on it after I posted about it I discovered the following:

1- If a full neurological exam is done, a brain/neurological brain disease has been discovered by physical exam.

2- The neurological exam is required to determine what type of brain/neuro disease it is.

3- It is also used to determine what type of disability level the patient needs.

4- It helps determine their level of brain function/etc.

5- It helps them determine so many other things that it just is frightening.

Basically I am scared to death. Mad. Angry. Have no clue what on earth to do at this point. I know that the other hospitals Neuro dept. is a joke so this clinic that I'm under is the best option for me. No idea what to do.

I will call the specialst who is prescribing both drugs as all of you have suggested. That bothers me. However, even before they prescribed the drugs- I was having those symptoms and was bed ridden for 3 weeks. However my walking gait has become worse over the last two weeks. Severely abnormal.

Thank you all for your help and suggestions. I will keep you posted. Your help and advice is very much appreciated.

Hugs

Coffeegirl

[kicker]

I live near Baltimore and go to Johns Hopkins. The first neurologist I saw and lab provided me copies with ALL results of tests. This is MY body and life, legally these are mine. The ENT doctor I saw tested me (I was and am dizzy, found nothing and sent me off in the right direction. You have patient rights here.

Neurologists can fail, but think they're God. A bad combination.

[Erin524]

If you want to know what they've documented in your medical file, just ask for copies of your records.

They might want to charge you for printing them out, but most medical offices dont charge exorbitant amounts for copies.

I have yet to be charged for copies of my records. I ask every year for copies.

[SallyC]

(((((Coffeegirl))))) I pray things get better real soon for you.

[Kitty]

I hope things improve for you, too. It's got to be rough feeling so bad and on top of everything getting no support from those you should be able to rely on.

Don't give up.......we all understand and will be right here for you whenever you need us.

[Dejibo]

There is NEVER a good excuse for an MD to lie to you! please speak to the new one, and explain that you felt mislead or left out of the loop from the last guy, and you WANT to be included in ALL medical findings and decisions from now on. no more leaving me (the patient) in the dark!

I do hope your tests bear out that its something simple, and easy to care for. Any neuro disease can be scary and frought with anxiety and stress. Take a deep breath, and head into the wind. It also helps to take a friend, or relative with you to help you keep track. PLEASE take a note pad! make notes! Take a tape recorder if you need to, so that you can refer to it later. Ask for copies of todays findings to be given to you. Most of the time, its a matter of that MD hitting PRINT! no big deal.

FIRE any MD that isnt honest with you, or makes you feel like you are faking, malingering or just looking to scam your way into disability. Many of them dont have enough experience, education, nor understanding to realize that we DONT want to feel badly, and we dont want to chase MDs, we just want to feel better! You will find most MDs that have either themselves had an illness experience, or watched a family member go thru one, have much more compassion.

Hang in there. come back and tell us what they find.