questions about clinic and a study

Signe

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Yes it is Wednesday, boy the fall has gone by fast. We're having snow showers here today and it is going to be a long winter I think. My son is improving from his infection and will be able to come home tomorrow, but still needs to have daily iv vancomycin at the local hospital.
I also have a question. Next week is my second ALS clinic appointment. At the first appointment they said it was a meet and greet appointment, though I saw several different services, speech, respiratory ect. Everyone was more just introducing themselves to me that anything else, I thought. So my question is do your neurologist and others assess you, examine you, at these appointments or just ask you questions and if you have concerns ect. This time I am having a pulmonary function test before the appointment and an overnight spirometry test. Also after the clinic appointment I agreed to having a spinal tap for a research study. Any thoughts or experiences to share, I am beginning to think that the two days and cost of hotels, meals, travel ect are a lot if they really aren't "doing anything". However, I also have a problem getting any other doctor as my local clinic will be closing Dec. 14, so I just don't know what to do for an md if I need one.
 

KimT

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Signe,

I ended up putting together a team of local doctors to tend to my needs. I stopped going to clinic because it just wore me out and made me depressed. I have my PWC and have done everything possible to prepare. I even bought my breathing measurement equipment because the numbers at the clinic were so erratic each time. At home, I can control the time I test myself and am getting more consistent results.

My local doctors handled my PWC and Trilogy orders without a hitch. My primary care will write anything I need and I have a counselor who will do Facetime, if I need it. He will also reply to e-mails without charge.
 

Nikki J

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clinics operate differently but I think mostly they address concerns as they arise. At mgh I only see other people if there is a need identified by me or my neuro. My neuro usually asks me but sometimes they say you need to see pt ( or whoever). Other clinics you see everyone each time.

thank you for agreeing to the spinal tap. They have learned so much from spinal taps and have identified markers related to some FALS genes and are close to validating biomarkers to aid in diagnosis which hopefully will help with faster diagnoses and rule outs.

i have had a lot of research spinal taps. Once they numb the area ( as they would for stitches or similar) if they get the needle in the right place you only feel mild pressure. Sometimes they have to adjust position slightly and it might hurt transiently but it usually is just a jolt.

Have you gone to the local clinic that is closing. Do they have suggestions? Are their referral people all leaving? I am wondering if you could get names of the people they use and a good local neuro. You could supplement that with an ongoing relationship with the distant clinic if needed and also ask about televisits
 

Signe

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Signe,

I ended up putting together a team of local doctors to tend to my needs. I stopped going to clinic because it just wore me out and made me depressed. I have my PWC and have done everything possible to prepare. I even bought my breathing measurement equipment because the numbers at the clinic were so erratic each time. At home, I can control the time I test myself and am getting more consistent results.

My local doctors handled my PWC and Trilogy orders without a hitch. My primary care will write anything I need and I have a counselor who will do Facetime, if I need it. He will also reply to e-mails without charge.
Thanks for your input. Sad but we'll have no local clinic in our area next month. I'm left having to decide if I travel to Rochester mayo or try to find something else closer. The nearest neurologist or any doctor is going to be at least an hour away. I wish I had a better option.
 

KarenNWendyn

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My clinic is a 3+ hour experience which includes PFTs, and visits of approximately 15” each by the neurologist, RT, PT, OT, RD, MSW, SLP. The RN in my clinic serves as the coordinator and comes in with the doctor or on her own. At the end of the clinic, the team gets together and discusses each patient. They handle rxs, DMEs, referrals, etc. I receive a printed summary about a week later. This takes place every 3 months. I could probably ask to come every 6 months or skip one of the ancillary visits.
 

nona

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I do not love the local clinic experience, in which I see everyone whether I need to or not and we have the same conversations every time. However, it is nice to have the contacts to email if something specific arises. I go every six months because they make me grumpy.

I much preferred the clinic in Boston and received much better treatment, but it was a three hour drive each way and the long days were tough on me and my caregivers. If I could sleep away from home, I would consider making an overnight of it, especially for the opportunity to be involved in studies and trials.
 

Ken15

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Our experience-
Clinic: We have been to 5 clinics, spaced 3-4 months apart. See each specialist for 45 min, starting at 8AM, including dietitian, OT, PT, Social Worker, Pulmonary, Speech and sometimes an ALSA chapter rep - plus her neurologist. At our last clinic (earlier this month), we also saw a palliative care doctor (my PALS is now in hospice care at home). Within 24-36 hours after clinic, each specialist posts results & analysis on the patient portal for us to see/review. Additionally, her doctor posts a summary of the visit. My PALS has always looked forward to these visits, especially seeing her doctor. It takes a lot of energy on her part, but she truly looks forward to seeing caring and compassionate professionals.

Yes, as some have said, they are basically tracking my PALS' demise. However, as the disease has progressed, they provide suggestions to issues we are facing at that point in time, including prescription (rx and dme) and non-prescription (e.g., fat handled utensils, zipper pullers, etc.) products. Keep in mind that your local PT, OT, pulmonary specialist is not likely to have much experience with ALS patients, while the clinic equivalents eat, sleep and breathe ALS. We travel 190 miles each way to clinic, so it is not right around the corner.

Lumbar puncture-LP (aka spinal tap): As part of a clinical trial, my PALS has had 7 LPs this year. She has indicated no pain or adverse reaction to any of them (a little research will show this is generally the case). They numb her up with Lanacane, perform the LP and make her stay lying down for 1 hour thereafter. During the first LP, I asked the tech how many LPs she had done; she said a couple of thousand.

Research Study: My PALS is C9, with 4 adult children & 8 grandchildren. She wants to do all she can to help them and other FALS. In addition to the clinical trial, she participates in 2 research studies and has signed paperwork to donate her tissue postmortem. One of my sons has donated asymptomatic spinal fluid 2x and the 2 others are planning on doing the same. The Mayo (FL) covers travel, meals and lodging costs for these spinal fluid donations.

Obviously, all clinics will not operate in exactly the same manner, but according to available budget, skills and facilities. As noted above, this has been our experience and we both feel very fortunate, in spite of the final outcome.

Hope this helps . . .
Ken
 

lgelb

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Some ALS clinics are up on assistive tech. Others are not. The ALSA site routinely hosts obsolete material. It does not take a knowledge of ALS, only paralysis, to be an AT resource, which some "regular" docs, ATPs, SLPs, OTs and PTs may be as well. If there is not a with-it ALS clinic in your area, also look at spinal cord, brain injury and pediatric units/clinics/rehab facilities, since they deal with paralysis/motor impairments, as does the "regular" VA and local medical equipment firms.

End of day, one need not pick up a logistical burden to go to clinic just to learn about adaptations to progression, when all that is available here and elsewhere. Absent trial participation and big-ticket equipment orders, they are for the most part in countdown mode. It is like any other service -- if it's nearby, affordable and you like it, do it. If not, don't sweat it. Or if you show up once a year to order a wheelchair and the like, that is your choice as well.

Best,
Laurie
 

Kristina1

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Like Nikki, at my clinic I see other specialists as the need arises. Neuro often identifies a need based on her exam and/or our discussion during the visit. I am always seen by the pulmonary NP who does the FVC breathing test, followed by my neuro, who does a clinical exam and the FRS. My neuro might order a referral to OT or PT or VNA care or whatever. She identifies equipment needs and so on.

For my particular case, I do also see Palliative Care regularly, and an AAC specialist who follows my communication needs. I was initially referred to each of them by my neuro and we went from there.
 

Signe

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Thank you everyone for your answers and sharing your experiences. I was at the ALS Clinic in Rochester last Tuesday. It was my second time there. I thought it was a much better experience than my first one. I think I have been angry at some of my doctors as my diagnosis was so delayed and one of the speech pathologists had been rude to me when I had seen her before diagnosis. Long story but I was not in a good place with her. Anyway, Tuesday she apologized to me about being wrong and how that must have made me felt. She was overly compensating on Tuesday though, but whatever.
Anyway my ALS clinic appointment was much better than previously experienced. I did the spinal tap for research and that went fine. I'd had one before a couple years ago and it wasn't a issue for me. I did get a bit of a headache this time but it wasn't too bad, and if it helps find answers it was worth it. I still have to search for a pcp, with our local clinic closing, sad really.
 

Clearwater AL

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I have mixed thoughts about going to clinic. I go to a very highly rated clinic but sometimes I have
the thought.... "What difference does it make. But then.... Pulmonary?
PT? I do more at home then the 45 minutes. there.

It's great in one aspect.... they serve lunch. For what that's worth for the entire morning. :)

Then I think... Am I contributing to the cause by going. My Neurologist measures my progression.

But as Laurie wrote above.... so much info is available here. If I have any issues with my BiPap I'd send
her a PM. Other issues we have Nikki. Then we have Karen too.

But I'll go.... Ann would get on me if I didn't. They treat her great while we're there. And... she looks
forward to lunch. :)

Maybe unlike for others.... It's only a 45 minute ride for us.

Sorry for rambling on.
 

KarenNWendyn

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they serve lunch. For what that's worth for the entire morning.
Gee, at mine there are only a few snacks and I can’t even eat them.
I agree I’ve learned more on this forum than at clinic. But I like my PT and clinic nurse. They have helped me.
I’m thinking of ditching my pulmonologist. Laurie’s advice has been better.
 

Nikki J

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No food for us. I got water offered once when she was several hours late 😀
 

Signe

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We're supposed to have a meal and a support group after but, its been canceled both times I was there. I did get coffee and my daughter had a muffin.
 

nona

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I've never been offered food other than a spoonful of apple sauce for the swallow test. And I have only a pulmonologist once on a separate referral, and that guy said I should consider oxygen so I'm not sure he knew ALS.
 
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