What to expect at 1st als clinic appt?

[shelly2612]

My husbands first appt at OSU als clinic, anyone been there or any clues what to expect?

 

[Zaphoon]

Hello!

It depends on their findings. MND can take up to a year and more to diagnose. If there are enough clinical and diagnostic findings, you may have a diagnosis that day. But, be prepared for the long haul.

Zaphoon

 

[shelly2612]

thanks for the reply, We were wondering what questions should we ask, We just want the Dr. to be straight forward and not pull any punches. What test should we expect? Lord, I don't know what we want but fear of the unknown isn't a pleasant thing. I have written down all the problems he is experiencing and approx when they began. I have had all his test results from his PCP faxed to the Dr. What else can we do to prepare?

 

[Zaphoon]

Hello again!

At my first appointment at the ALS clinic, they performed an NCV and EMG along with taking additional blood samples for testing. My first neuro performed about 6 blood test and the ALS clinic did 3 more.

The NCV and EMG test results were immediate. I had to wait 2 weeks for the blood work to be done and results to come in. The neuros are usually very reluctant to talk ALS, MND on a first visit simply because there are too many other things to look at first. Having said that, if the clinical presentation and nerve conduction studies give them enough, they could give a diagnosis of suspected, possible or probable MND but I doubt they would diagnose "definite" on a first visit.

Zaphoon

 

[happy]

First appt. you can expect an appt for an emg a nerve conduction study and to talk about your husbands symptoms. Have you already had all the blood work done? Or have you had a lumbar puncture to rule out MS?

My recommendation...write down symptoms in chronological order of onset. Write down all your questions..do your research a head of time. Bring a notebook with you so you can write down what he says...you will forget most of it, but that way you can refer to the notebook when you get home. That's about all I can think of. well lastly try to stay calm....this is a very stressful appt. My prayers are with you.

 

[BethU]

Hi, Shelly ... I know how nervewracking this is, and you're right ... waiting for the unknown is completely stressful.

The neuro will probably do all the usual little tests ... reflexes, having your husband walk around, touch fingers to nose ... these seem like silly tests, but they really tell the doctor a lot. She/He'll ask a lot of questions about symptoms, and it sounds like you are really prepared, with a timeline. That's great ... it will help a lot.

Also, have all your husband's current meds written down, with the dosages and how many times a day he takes them. I'd write down a very brief medical history, too ... like hospitalizations and surgeries, with the dates ... just because you'll have to fill in forms at first, and it helps to have a cheat sheet because you'll be nervous.

I'd suggest you also take a list of your husband's other doctors' names and their phone numbers, in case the neuro wants to consult with any of them later. (I've had that happen, so it helps to be able to give the info right away.)

The neuro probably won't do an EMG or any other "big" tests at the first visit. He may schedule your husband for an MRI, or an EMG, or blood work, and schedule a follow-up appt in a month to go over the results. This first visit, he will be gathering basic information.

As to questions, there are SO MANY possibilities the doctor will have to consider, that he probably won't be able to narrow it down at the first visit, or give you much information. But you can ask him what impressions he has, and what you can expect in future visits.

I have found that neuros do a lot more listening than regular doctors do ... and most are pretty responsive. Talking to a neurologist is a lot like a conversation ... they are really engaged in what you tell them. (Some are not as good ... but most are real people.)

Good luck on the tests. You are going to be in very good hands at the OSU ALS clinic.
BethU

 

[rose]

Shelly, I'm sorry your hubby is so ill, I know you've got to be worried beyond words.

I think what to expect has to do with what kind of clinic visit is scheduled. Did they give you an idea of how long it is to last?

I've seen a neurologist in the MND division down at Hopkins, on two separate occasions, but an ALS clinic appointment there means somewhat of a different agenda. (at least at this facility) It is not the same type appointment as one being scheduled to see just a neurologist.

Do you know if his appointment is for the "clinic", or for a specific doctor that is at the clinic? At my first visit with this neurologist, although no tests had been set up for me in advance, as we were coming from out of town they did go ahead and work me in for EMG testing and pulmonary function before I left for the day. I have my first appointment in the actual clinic (as opposed to one for my neurologist in her office) at the end of this month, but we went in for introductions, and met the director of the actual clinic last time we were down there this past July. First thing they did was sit me down and test breathing function.

I was advised that when I was there for my actual appointment, it would be a few hours in length. When we stepped in for the introduction, we noticed they had lunch items like sandwiches and cans of soda set out for those that were there for their regular session. We were told that typically I would have my breathing evaluated each time, and also see other specialists, such as an occupational therapist, physical therapist, nutrition counsellings, etc.

Having not gone for an actual "clinc" visit, I'm no help in sharing my experience, but it is my understanding this is a supportive appointment, which may or may not include more diagnostic testing.

As your husband's breathing has been such a concern, and as you're being seen in the clinic, I'd expect that this may even be the first thing that they check when he arrives. If he's not being seen in the actual clinic, but rather that medical center's MND/Neuromuscular division of neurology, then his breathing might not be checked first off, it could be the evaluation with the neurologist, and then whatever is deemed appropriate for him.

As they should already have all of your husband's records, they could have a series of appointments already set up for him within the clinc, or, all of this may rest on what the neurologist feels should happen after he/she evaluates him. Do everythiing possible to make sure every type of test result, biopsy, other doctor's evaluations are sent ahead. At the very least, bring them with you. If he's had MRI's, biopsies, that type of thing, it will save you a lot of time, and possibly save him having to have a repeat of a procedure done again, if you have these (the actual films, pathology slides, etc) sent on beforehand, or to bring them to the appointment.



Good luck to you both! You're on the road to some answers and help.

 

[Zaphoon]

Shelly,

In my case, it was a 3.5 hour drive to the clinic and they were going to get as much in as they could. They also scheduled me with an afternoon appointment to make it easier for me. If you are driving a long way to get there, chances are, they know it and will do as much testing as they see fit. The others have mentioned some very good points. Have the current GP's contact info ready. Have the list of meds your husband is taking and run down on chronology of symptoms.

Have that long list of questions ready, too.

Best of luck and I hope it winds up being something other than an MND!

Zaphoon

 

[shelly2612]

Thanks Everyone........................boy I thought we were nervous when we first heard ALS, but this appt. has us both on edge. We shall see what happens and try to be a prepared as possible for our visit tuesday........Once again thank you and if you think of anything else we might need don't hesitate to post it..........