Questions about visit to UCLA

[halfin]

As I mentioned in my other thread, I've been referred to the UCLA neuromuscular clinic on July 13, a week from Monday. I'll be seeing Dr. Graves. I have a few questions about what to expect, hoping to hear from other people who have had referrals like this.

When UCLA set up my appointment, they said this would just be a consultation, there would not be any tests. Does that sound right? It's a 2 hour drive each way, kind of a pain if I'm just going to be filling out some questionnaires and having my history taken.

My wife suggests that they might say they want me to come back the next morning for tests, and so we should be prepared to spend the night there in that case. Does that sound likely? We do have some family in the area that could put us up, but I'd have to arrange with them in advance.

I'm supposed to go by my neurologist's office this week and pick up hard copies of all my medical records, also go by the MRI place and get the MRIs on disks. I guess this is in case UCLA has somehow lost the whole package, which judging by the somewhat inefficient bureaucracy I've had to deal with already, doesn't sound impossible! Anyway, that will be useful, I'll get to read the EMG results myself, see how much I can understand.

UCLA told me I should be prepared with questions to ask. Does anyone have any suggestions for things I should bring up? I am trying to create with a list, might post it here in a few days for comment. Thanks -

Hal

 

[BethU]

Hal, I think Dr. Graves is great. You will be in good hands.

You haven't been diagnosed, so it sounds like this will be strictly an evaluation. Except for lung function tests and a clinical trial I was in, I haven't had any other testing done at UCLA. They accepted my previous tests and my diagnosed and referral from UC Irvine. I doubt if they will ask you to come back the next day.

Diagnosed ALS patients are seen on Thursdays, and then you get the whole shebang: A visit with the neuro, and a visit with all the therapists ... they do a lung fucntion test, and you see an occupational therapist and/or physical therapist. Because I have bulbar symptoms, I see a speech therapist, too. Combined, the clinic follow-up appointments usually last all morning.

Once you get the hard copy of the EMG results etc., I'd suggest making copies for yourself, by the way. You're right ... the UCLA bureaucracy is not too efficient. When I was trying to get my first appointment there a year ago, I eventually had to fax my own copies of my tests to them ... they kept losing the ones sent by UCI.

Good luck!

 

[halfin]

Thanks very much, Beth. That's very helpful information. I am hoping they might do some more tests, for example I've read about a blood (genetic) test for Kennedy's disease, which has some of the same symptoms but a much better prognosis. I asked my neuro about this and he said that should be up to UCLA to decide whether that test makes sense for me.

One of the big questions I want to clear up is, what diseases have been ruled out by the testing so far that could cause symptoms like mine (mostly blurred speech, hoarseness, maybe some slight breathing weakness; also the "dirty" EMG in arms and legs); and what diseases still remain open as possibilities? I've had the EMG, nerve conduction, blood tests (12 vials), 24 hour urine, MRIs of head and spine, and evaluations by the neurologist, speech therapist and ENT. So there's been a lot of information and I'm left a little confused about the state of play.

Thanks again for your advice, that's a good suggestion to make copies of the records for myself, I'll do that.

Hal

 

[Mahealani]

UCLA visit

Aloha Hal,

I had an appt. with Dr. Graves in March 09 and flew all the way from Hawaii. It was pretty much as you described. It was a "consultationi/second opinion". The actual appt. with the Dr. was about 45 mins. and no additional tests were done by the doctor. I hand carried my medical tests and x-rays from Hawaii, he reviewed them with me and conducted a physical nuerological exam. He said normally they would schedule you later with the OT/PT/respiratory therapist but since I had come so far he checked to see who was available to see me. The PT came in and asked me if I had questions or current problems, of course I was in the early stages and still in shock over my diagnosed so I didn't have a lot of questions and only my arm/shoulder was giving me problems. She was very knowledgable on ALS and went over some general information like stretching, range of motion exercises and things like never use resistance or weights in your exercises. Now my symptoms are much worse and the PTs here in Hawaii are not experts on ALS, they tend to use me as a learning specimem, I wish I had access to her now! I also saw the respiratory therapist and he gave me a breathing test which was very good at the time.

Of course they invite you back but in my case the travel costs are not economical, but they are experts in their field and you realize it once you are back dealing with the non- experts.

Dr. Graves agreed with my diagnosed from Hawaii rather quickly after reveiwing my months of tests and x-rays, I was hoping he would have needed further Evaluations or tests. It was over much sooner than I had anticipated.

Good luck with your appointment!

Mahea

 

[terpaul]

Hal,

I am from Santa Barbara also. I was wondering if you mind talking to me. I was diagnosed with ALS about a week and a half back. I would appreciate in information that you have on clinical trials or treatment. Thanks.

Terpaul

 

[halfin]

Thanks for the comments here. I should make clear that I have not been diagnosed with ALS (or anything else). I have only had noticeable symptoms for a couple of months and they are pretty much restricted to my speech. The EMG did see some messy signals in arms and legs and on that basis he sees "possible motor neuron disorder or a variant" and has referred me to UCLA for further evaluation and/or diagnosis.

Terpaul, I am very sorry to hear about your diagnosis of ALS. I too am very new to this situation and I don't know much about trials or treatment. However the other forums here seem to have very helpful information and people and I hope you will be able to find what you need. One thing I ran across while searching the forums was this reference to a local doctor, David Frecker, who apparently has experience with ALS:

Cottage Hospital, Santa Barbara
2403 Castillo St. Santa Barbara, Ca. 93101
Appointments are scheduled on the 1st and 3rd Fridays of the month
ALS patients must be referred by MDA: call (805) 563-0456 and ask for Lisa
Dr. Frecker: (805) 569-7287

 

[halfin]

Wanted to follow up here with the results of my visit to UCLA yesterday. I really liked Dr. Graves. I was very nervous about the appointment but he had a calm and easy-going manner as he took my history and did a brief but thorough neuro exam. He generally felt that my symptoms are very slight and do not point to MND/ALS at this time. If it is something like that, it is in the very very early stages and is progressing very slowly, which would bode well even if that were to develop eventually. He also thinks that mysathenia gravis is a possibility even though I was negative on the blood test. He wants me to come back in a couple weeks for a SFEMG (single fiber EMG) which can apparently help indicate if some kind of MG or ALS process is going on. At our request he also ordered a couple of blood tests, to check for Kennedy's and celiac, both of which we had read could mimic ALS and cause neuromuscular symptoms. (The famous UCLA bureaucracy raised its head there, we had to wait almost an hour and a half at the blood lab to have the samples taken.)

So generally this was very reassuring. While Dr. Graves could not absolutely rule out the possibility that my symptoms could worsen and develop into serious disease, at this point that seems to be at worst a concern for the future, not something we need to worry about now.

Again I want to thank everyone here for their reassurance and help, and offer my hopes and good wishes for the health of others in this community.

Hal

 

[BethU]

Hal ... thanks for letting us know what happened. That is great news. I hope it turns out to be MG and treatable!

Keep us informed.

 

[halfin]

Wanted to follow up on my visit to UCLA on Tuesday. Unfortunately this time the news was not so good. Dr. Graves had intended to do a single fiber EMG, but decided to do a regular EMG first. My situation there seemed to have gotten worse. My EMG in May by my local neurologist had found some polyphasic units but no other problems. However this time Dr. Graves also found fibrillations and large units. On the basis of these readings, plus some hand weakness and my continued slight problem with speech, he did diagnose ALS. He wants me to start on Rilutek and come in every three months for monitoring. At this point I will only need speech therapy, apparently.

This was a great shock to me because truthfully, in almost every respect I am in far better health than the average person. I have always viewed myself as extremely fit and healthy. I run, and I have been a little embarrassed to post here how much, given the very real challenges that most participants here face. I did P90X, a very challenging fitness program, last fall and had good success with it. And this year, I'm training for my first marathon. I tried running one in May but had a leg injury that made me drop out halfway through. Now I am aiming to run a marathon in December (the course literally runs right past my house). I've done many half marathons and will do another in a month. My running seems to be largely unaffected, unless this leg problem turns out to be related. I am changing my running style a little to try to reduce strain, and won't push as hard for the December race. I had a couple of 20+ mile training runs in April and they really wore me out. This time I just want to finish.

The good news is that Dr. Graves said I was, of all his ALS patients, definitely the one whose symptoms are the most mild. On that basis I can hope for at least a longer than usual period of good health. And maybe I will turn out to be one of the lucky ones who, for whatever reason, are able to go on for many years and even decades.

Frankly at this point I am still somewhat in denial and skeptical that Dr. Graves can diagnose such a serious condition when my symptoms are so slight. I realize that he is an expert who specializes in this disease, and so I am certainly going to be cautious going forward, try the medicine, and look into what other ALS patients have had success with. But I am focusing on health and I am not yet fully ready to consider myself an ALS sufferer or whatever. It's absurd for an extremely fit 53 year old marathoner to supposedly have ALS. That's how it seems to me anyway. At this point I just hope that my symptoms continue to be relatively stable and that I am able to stay healthy and enjoy all the things that I am doing now.

 

[joelc]

That is really good news! I also hope that your progression is extremely slow.

 

[BethU]

Hal, I'm so sorry for your diagnosed, but I agree, you have everything going for you. If it is ALS, as Dr. Graves says, it should be an extremely slow progression, since your symptoms are so mild and your fitness level is so high.

Good luck with the marathon!

 

[hopingforcure]

If you indeed have ALS it sounds like a a super slow progression you will be a SUPER SLOW ONE. Maybe even a PLS or UMN variant. I do believe this thing come in all different types. I am one of the slow progressers, and I know of quite a few people who are on here. Big Mike is a good example of one person who is a slow progresser, and we have a ton more. Please keep us posted, and come share with us, we are all here for you.

 

[halfin]

Thanks for the encouraging thoughts, everyone. I am really kind of lost in confusion right now. Unfortunately, the day after my diagnosis I had to leave town to take care of a family matter. This news was so unexpected, I never thought of what it would be like to have to process such information when away from my wife. But due to a great sacrifice by my sister, I will be able to go home tomorrow. I'm sure I will feel better when I am reunited with my wife and we can figure out together how we will face this challenge.