Old 01-05-2018, 01:34 PM #16 (permalink)
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Default Re: Dangers of using bi-pap without a prescription?

Hi Brandi,

Have you been diagnosed with ALS? I see multiple open threads (you should only have one going I believe), in which you ask questions outside of the DIHALS section, but I have not heard whether you have an official diagnosis. I think you were going for a second opinion? When would that be?

It's a terribly stressful time to wait for that second opinion, but I also believe that asking multiple questions and running multiple threads, without an official diagnosis is taxing on the kind folks of this forum. I think you were going to the ALS clinic at some pint. How did that go? My apologies if I've asked something you have already posted.
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Old 01-05-2018, 01:47 PM #17 (permalink)
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Default Re: First to go, voice or ability to swallow?

Mod note: Merged threads.

Brandi, can you please continue posting on your original thread here. It helps members to see your entire posting history in one place. Thank you.
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Old 01-05-2018, 02:53 PM #18 (permalink)
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Default Re: First to go, voice or ability to swallow?

Brandi,

As noted, to answer any MND-specific questions, we really need to better understand the status of your diagnosis.
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Old 01-05-2018, 07:19 PM #19 (permalink)
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Default Re: First to go, voice or ability to swallow?

You are aware that there are 2 types of sleep apnea, obstructive and central. Obstructive is your typical 40+ overweight smoker who snores, loudly. This occurs when a portion of the airway relaxes and obstructs the flow of air. This is why you have a cpap, the forced air keeps the airway open so you can breathe. Central apnea is when for whatever reason your central nervous system does not maintain breathing due to anything from drug overdose to spinal cord injury to a neurological condition. The difference is quite obvious on a sleep study. So, if you were given a cpap, you have obstructive sleep apnea, not central apnea.
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Old 01-05-2018, 11:32 PM #20 (permalink)
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Default Re: Dangers of using bi-pap without a prescription?

Thank you so much. I was asked to limit my posts to the DIHALS section, which I very respectfully did, so I am not sure what you are referring to.

I completely understand the decision of the forum and am grateful for all the work and support you do. However, given the enormous blocks and delays in getting diagnoses (and in my case, finding a neurologist who is not downright cruel and inhumane and traumatizing) I am saddened that you are not there to support those of us who need it at the very least by providing information that might allow people to make informed decisions by causing no further harm to themselves.

The ALS Association here is not the least bit concerned that I have no diagnosis and are giving me their full support.

I respect that you cannot but I do hope that you do not, at the least, reprimand those of us who are respectfully posting within the limits of the parameters set for us.




Quote:
Originally Posted by Bestfriendstilltheend View Post
Hi Brandi,

Have you been diagnosed with ALS? I see multiple open threads (you should only have one going I believe), in which you ask questions outside of the DIHALS section, but I have not heard whether you have an official diagnosis. I think you were going for a second opinion? When would that be?

It's a terribly stressful time to wait for that second opinion, but I also believe that asking multiple questions and running multiple threads, without an official diagnosis is taxing on the kind folks of this forum. I think you were going to the ALS clinic at some pint. How did that go? My apologies if I've asked something you have already posted.
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Old 01-05-2018, 11:55 PM #21 (permalink)
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Default Re: First to go, voice or ability to swallow?

You mention an appointment this month. Do you have an appointment at UC San Diego? They can write you a BiPAP if you need it.

As for getting a BiPAP without a script, there is no need since any doc, not just a neuro, can write one.

Reimbursement, however, will rest on a suitable diagnosis + pulmonary function tests, and/or a sleep study. It sounds like you had a sleep study but I don't understand your reference to respiratory acidosis, which we would not expect to see in early disease, or what the findings were, or why you needed a sleep study to get a BiPAP if you have ALS...I'm not getting the sequence of events, I guess.

Add to this your reference to wanting to die ASAP, then asking about long-term care, and you can see why we might be confused?

We are here for anyone in the process of being diagnosed or with a diagnosis. Our issue is not that you are not formally diagnosed -- it is the inconsistencies. So let me try to clarify --Who made the "unofficial" diagnosis and what did s/he say?

Last edited by lgelb : 01-06-2018 at 12:43 AM
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Old 01-06-2018, 05:30 AM #22 (permalink)
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Default Re: First to go, voice or ability to swallow?

Hi Brandi,

My questions in my response were due to your inconsistencies over your last three posts. I was trying to get further clarification. You are coming to a forum of terminally ill people, saying that you, too, have an "unofficial " diagnosis, and trying to garner information without clarity of what your diagnostic process has been. As asked before, you said you had an unofficial diagnosis-how is that going today?

Also, you said you had an appointment at an ALS clinic- what exactly did the ALS clinic say? If you are in the process, it helps forum members to know where you are at to better help. If you are no longer in the process of getting a diagnosis, this where the confusion comes in.

I'm sorry you are having a traumatic time with neurologists. My husband's experience has been anything but. They've been kind, present and there for him almost anytime he needs them. I'm surprise that with you having an unofficial diagnosis, that they would be cruel, and inhumane. I would hope that they would go above and beyond, as time is usually of the essence. I'm glad that the ALS clinic is giving you their full support at least.

Again, who made the unofficial diagnosis and where did you fall in the El Escorial table? Or what were their thoughts on that anyway?
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Old 01-06-2018, 06:36 AM #23 (permalink)
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Default Re: First to go, voice or ability to swallow?

Kim and Brandi....my heart hurts for you both. It's bad enough that you get to deal the this beastly disease but that you don't have a caregiver to help you. I wish I lived near you both so I could help you! I will say that you both have to be very strong ladies as you both sound like your dealing with what you have been handed like champions. Bless you both.
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Old 01-07-2018, 12:35 PM #24 (permalink)
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Default Re: First to go, voice or ability to swallow?

Hi Laurie,

Thank you for reaching out again. I truly do appreciate your support.

I have repeatedly asked for a bi-pap, but I continue to get passed around from pulmonologist to sleep doctor to neuro and back again. No one will write one for me. I have two PFT which show very clear decline in MIP and MEP, and the last one shows decrease in function in supine position. The first PFT references neuromuscular defect but the second one states clearly that this is in line with neuromuscular defect and states that the endurance of the muscles of ventilation may be compromised. I will try to upload a photo is I can figure it out. My MIP was 40% and MEP was 20%. I also have a bicarbonate level at 31 from an RR visit.

No one is taking the reports seriously, saying that they are “effort-based” (why have a patient take these tests if you are not going to believe them?). Someone would have to be working REALLY hard to not breathe to produce an MEP of 20%. When I asked the neuro to examine my breathing/ respiratory weakness, he just shrugged and gave me a blank look. I have been tested for heart issues, multiple autoimmune diseases (I also have autoimmune thyroid disease), lung disease. Nothing.

I had what I thought was an appt. at the ALS clinic, but it turned out to be at the normal neuro clinic with a neurologist who was grossly incompetent (a supposed neuromuscular specialist) and dismissed everything I said, refusing to listen to any symptoms of respiratory weakness, issues with swallowing and speaking, complaints of cognitive decline , and the long list of other issues I have. He was combative and arrogant. He cut my female friend off when she tried to ask what it could be but then proceeded to ask the male in the room if he had any questions. This doctor gave me nothing except more despair. I called the ALS clinic twice to request an appt. with the clinic itself (with the longstanding director) but have yet to hear back. I have an appt. with a neuromuscular Pulmonologist but that is not until March.

When I had the EMG they could not even locate my phrenic nerve to measure diaphragmatic weakness and I did not know until later about how to test the bulbar region. The doctors are saying based on that test I do not have ALS. The first neuro told me that if I had ALS it would show up on the limb EMG.

My obvious concern is that this is pulmonary onset. I had shortness of breath in June which progressed and became severe by October. Now I still have respiratory/ chest weakness which makes lifting, pushing, and pulling so challenging but for the moment it is not as severe. For four nights I have also been able to sleep lying down.

My early reference to not prolonging life was in regards to a feeding tube. For the moment I do need my strength and cognitive function (which declines dramatically when there are breathing issues) to get a diagnosis and figure out next steps. At the moment I am only in temporary housing until early Feb. and don’t know where I will end up.

Thank you for any suggestions you might have.

Oh, and the unofficial diagnosis came from the only one who is alert, observant, and meticulous enough to actually listen to me: my Speech Language Pathologist, who has written to both the neuro and my PCP that she is concerned about ALS. No one has responded. She saw what she calls “borderline fasciculations”, which I see all the time (I have researched and know what they look like).

I am hoping to get an outside opinion with a neuro at another hospital but am not sure if he will see me—it’s also out-of-pocket (I am so n Medicaid).

Again, I am so grateful for whatever suggestions you might offer. At this point I am beyond despair.

Last edited by Brandi : 01-07-2018 at 12:46 PM
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Old 01-07-2018, 12:40 PM #25 (permalink)
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Default Re: First to go, voice or ability to swallow?

Thank you so much JLynn, your kindness means so much!❤️��❤️
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Old 01-07-2018, 10:29 PM #26 (permalink)
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Default Re: First to go, voice or ability to swallow?

Brandi, that's a lot of doctors! It seems that all the doctors see you, review your record, and listen to you, they disagree with you. Time to take another tack.

Regarding your unofficial diagnosis: I think I can confidently say that you don't have any basis for that diagnosis. You DO have something wrong. You deserve a proper diagnosis. But I see no reason to think of ALS. A speech pathologist has no relevant training to diagnose ALS. She might make a suggestion--as she did--but it appears that all the doctors who could make the diagnosis have dismissed that suggestion. That's good news for you.
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Old 01-07-2018, 10:46 PM #27 (permalink)
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Default Re: First to go, voice or ability to swallow?

Quote:
Originally Posted by Brandi View Post
The doctors are saying based on that test I do not have ALS. The first neuro told me that if I had ALS it would show up on the limb EMG.
Yep.

And no one here thinks otherwise.

Good luck, lass, but you really don't belong here! Which is good!
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Old 01-08-2018, 08:14 AM #28 (permalink)
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Default Re: First to go, voice or ability to swallow?

Wow, those are a lot of medical appointments and doctors visits. Now from finally getting clarification, as Mike said, an SLP is no where near educated to give an ALS diagnosis. While they are well educated, they are not even an MD, let alone all the other pieces of education needed to diagnose ALS. An unofficial diagnosis would be, for example, a neurophysiatrist, trained in EMG studies, finds ALS and then refers you off to an ALS clinic for reconfirmation. That falls under "unofficial diagnosis".

As for your complaints about the doctors, sleep study clinic and the EMG specialist, if they don't see ALS or anything alarming, they are not going to say they are. Why would you want them to?! While I'm sure what you're going through is real, you're possibly going down the wrong path for diagnosis.

In any case, you don't have ALS (why would you want to?), and from finally getting clarification on your "unofficial diagnosis", I'm sure others are in agreement as well.

Good luck to you and all the best in your diagnostic journey. You don't belong here for answers; be grateful for that.
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Old 01-08-2018, 05:33 PM #29 (permalink)
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Default Re: First to go, voice or ability to swallow?

I too was hesitant to get the feeding tube but my family pushed it so I went ahead and had it done. So glad I did. Makes nutrition much easier and getting the meds down was another issues that has been resolved with feeding tube. Hope you will change your mind. It really helps.
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