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Midnight

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So..I had an appointment at UCLA yesterday. I was hoping that I would get some answers, but the only answers I have received were that I am the most healthy person in the entire world. My nerves are amazing, my emg (#2) is clear. The only things they can find wrong is my gait is completely screwed up, I cannot hold my head up for more than about 5 minutes, I have an abnormal reflex in my right foot, and (although they were not really concerned) I am losing the pad in my left hand (I am right handed, so I guess it doesn't matter). They did zero bloodwork, said they'd have to schedule me for a sing fiber EMG (it'll take a couple more months to get in for that) and so they sent me home. I waited four months for this?

I am just so sick of being sick and trying to put on the happy face for everyone. I just want to either feel better or KNOW WHAT IS WRONG WITH ME! It is so frustrating. So, I am going to just resign myself to the fact that I am going to be like this forever and I am at the point I NEVER want to see another doctor again. As far a MG goes, they said that because the doctors didn't find the positive Acetycholine In my blood in September, than I'd have to be the 5% that doesn't show it in my blood and the chances of that are slim. So I just pray that I don't end up with breating issues again and have to go get air. I am going to buy a stupid cane and just try to put 2007 behind me and forget about it. I am so sorry to have such a crappie attitude. I know I have a lot TO be grateful for, and in no way do I mean to disrespect anybody's health issues that validated health concerns...... but I am so frustrated right now I could scream. So I guess I will either get better or get worse and for now I am just going to continue to try to "be in" my life. I just hate it.
 

mamaoftwo

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I hear you! I know how that feels and how frustrating it is but at the same time, you have to feel blessed that they didn't take one look at say "not MG but definitely ALS". I would just put it all behind you, enjoy the holidays as best you can with your kids and then tackle it again in 08. That is my plan at least. As for the MG diagnosis - well you could still have it. Doesnt matter if you'd be in that 5%, it is still a real possibility.
I am happy for you and upset for you at the same time. PM me anytime. I am in the same boat as you and know exactly how you feel.
 

sharonca

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I so much feel for you and how your appointment went at UCLA. I went to UCLA 12/13 for my follow up appt after an EMG 5 weeks ago. I had hoped for a visit where I would be told that it would take longer, would need more info, anything other than what I got. ALS. Not a variation of, not anything else - ALS. I asked if there was somewhere closer to where I live in the IE - like Loma Linda University for follow up treatment but they said it would be better if I continued to come there. A visit in January and then another in March. To be seen every three months. I was like a mad man doing research on the internet after being told at my EMG visit that he couldn't give me any info on what could be wrong since I had come to the appt by myself. So five weeks of constanting bugging people for info and getting none. After reading the threads on this forum I realized that five weeks of waiting was really not that long in the limbo of waiting for a diagnosed. Of course, right now I'd trade the diagnosed for limbo in a heartbeat.
 

crystalkk

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sharonca,
I am so sorry about your diagnosed.
Do you mind me asking you what your symtoms are?
 

vmd

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Sharon:

Just remember that at this site you will find strong support for whatever you are going through and that many on these boards are living, and living well with MND.
 

Judith

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Hi Sharonca,
I hated my drive to UCLA from Yucca Valley. It took me 4 hrs. to get there and 7 hrs. to get home. (Traffic)
Initially, I went to a Neurologist at Loma Linda. Her name is Dr. Laura Nist and she specializes in ALS. I like her a lot. She personally did the EMG/NCS test right there at Loma Linda. She did advise a 2nd opinion. I chose UCLA. Dr. Nist did agree with their diagnosed. (PLS). Personally, I prefer Dr. Nist at Loma Linda to the Drs. at UCLA.
Dr. Nist is concerned and treats me like a person. At UCLA, I was just another number. That was the way I felt anyway.
Just thought I'd let you know there is a good ALS Neuro at Loma Linda.
Judy
 

sharonca

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Thanks for the info Judy. And to all that I read on this forum.

Crystal you asked about my symptoms. It started with falls (and thus a broken ankle) a year and a half ago. Very escalated symptoms since August this year. Toe Drop, foot drop, akward walking. Now use a cane for walking - probably switch to a walker very soon. After my diagnosed 12/13/07 I was told to curtail typing to save my hands a little longer. Also at that appt the respiratory therapist said my breathing was at 66%. Actually hadn't felt I had a problem but guess I do. The tingling is all over my body. Actually noticed in my lips yesterday. bummer. I have already ordered AFOs for walking and should get them in a week or so.

I had been curious on whether to switch from UCLA to LLUMC due to the drive. I live in Mentone right now - had to give up my condo in Palm Springs due to 21 steps! Dr. Graves said that UCLA had more options for me due to the MDA clinic resources. I plan to attend the support group meeting 1/17 at LLUMC and hope to get some answers about where to get the ongoing treatment. Dr. Graves was wonderful though. Just hard to get into to see.

Sharonca
 

Midnight

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Hi Sharon,

I read your post and you have humbled me and given me some perspective. As irritated as I was I am grateful that I do not have any diagnosis. Thank you. It sounds like you are on track looking into your options. We have actually been contemplating making a move because of stairs too. It is no fun to give up your home no matter what the reason, but hopefully you were able to sell high and get a good interest rate if you got a single story! I always think of that Chinese Proverb..."one door closes and another one opens". I hope you are staying warm and dry in this rain. Have a good weekend and I hope you find the support you need as close to home as possible.
 

sharonca

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Hi Midnight.. Unforutnately my mother died of Picks Disease in March. Fortunately her house was available to me - one story nice property. So yes I am fortunate to have had an option since my other place is not selling. I go to UCLA again on 1/10/08 to see a Dr. Sepulveda. Not a clue who she is or what the appt is about. They just said that she wanted to meet me. I did some research on the UCLA web site and cannot find a Dr. Sepulveda. So I'll go to UCLA again and then to the support group at Loma Linda on 1/17. I think it is good to look at all option on where to go for continuing care. UCLA is just so far and I feel like I'm not connected to anyone for my care.

Sharonca
 

crystalkk

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midnight,

did you have the single fiber emg yet< keep us posted....
 

mamaoftwo

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Crystal - how does one know the difference. I do not know what kind of EMGs I have had. How would I know? And what difference does it make to the results?
 

crystalkk

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Mama,

They use the single fiber emg sometimes to detect MG.
You probable just had a regular emg.
I'll google it and see what it says.
 

crystalkk

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mama,

What is the single fiber EMG?
The single-fiber EMG evaluates how well the nerve and muscle communicate. It involves insertion of a recording needle electrode into the area of the nerve-muscle communication point (the neuromuscular junction). There may be some discomfort with insertion of the electrodes (similar to an intramuscular injection, or a shot that goes right into the muscle). A single fiber EMG is often done on an eye, forehead, or forearm muscle. If a person is in remission, the SFEMG is normal, but if there is weakness from MG, the SFEMG is usually abnormal. Patients with ocular myasthenia will have an abnormal SFEMG. The diagnosis of MG is made after accounting for all the clinical symptoms and signs as well as the tests performed. Most patients tolerate the procedure well. A single-fiber EMG is a more technically difficult procedure than the standard EMG. Studies of this method suggest that it may detect abnormalities in over 95% of MG patients. However, other diseases may produce similar abnormalities. The test should be done by someone with extensive experience.
 
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