Forced Vital Capacity test

[Sammy88]

Hi , I was wondering if you could buy a Forced Vital Capacity test, if so are they accurate.

I wanted to test my breathing, having a few problems lately with morning headaches, coughs, getting out of breath.

Is forced Vital Capacity test the right device ? Thanks

 

[lgelb]

It's not a test you can buy and self-administer.

Since you are worried about your breathing, ask about PFTs, available in all hospitals and various sites elsewhere. This testing is regularly part of the treatment process as ALS progresses or in those with bulbar or respiratory onset. And not knowing how things are working for you in the UK, even a GP would be able to order pulmonary function tests here -- it would not require an ALS centre.

Meanwhile, you can video your sleep and see if there are long intervals between breaths, gasping, etc., though the absence of such would not mean you could not have ALS-related breathing problems. I would also look into elevating your head if you are not using a hospital bed and avoiding food/drink that can depress respiration before bed (alcohol, high fat, high sugar foods). But really, your docs should help you with this after discussing your symptoms.

 

[Nikki J]

I think Sammy’s problem is that the NHS is in shambles and she is not getting the needed care from anyone not even the gp.

you should be able to buy a pulse ox that records. I have one and can download a summary to my phone. I use it periodically to make sure I am not desaturating at night.

Laurie is right that you need a clinically administered test but that is a problem I know. I wish I could magic you here and get someone to test you.

 

[lgelb]

Yes, and I would look closely at the pulse as well as sats. The sats often do not change even when CO2 is being retained or, as is more likely in early disease, you are breathing more shallowly than your body is happy with, but the pulse is more likely to.

I would also check your BP, pulse, and sats before bed and right when you get up.

But with the NHS in a shambles, I would start working on a plan to get BiPAP and other equipment you may need, anyway. Is it possible to get one of the major MND centres involved on a consultant basis, to push your local group along? Like Nikki, I wish I could do more.

 

[KimT]

Sammy, The short answer is yes. I’ll send you a message on the UK forum detailing the equipment I bought and where to buy. It isn’t cheap but my RT said it was accurate.

 

[Buglaw]

I’m in an at home progression study that uses mir spirobank smart. It’s like $200 and has been consistent with my in-office tests.

 

[lgelb]

I was thinking Sammy meant a completely remote process. The VC home tests of which I'm aware recommend initial training.

Here is a paper about one.

Re the OTC versions, they seem pricier than $200 and I'm not sure what's available in the UK, but the larger concern is, to what extent will the results be actionable if there is no way to get the equipment, like BiPAP, suggested by the results? Is there a UK doc like a GP that can write equipment orders for you, for example?

 

[Nikki J]

The mir spirobank smart looks great but I could only find 2 sources. One requires it to be sent to a medical facility the other seems like a scam. Searching the company there was a bbb rating that was the lowest possible and complaints of paying but never receiving the item. There are other options from the company but the affordable one only does peak flow and fev1

 

[Sammy88]

Thank you Igelb and Nikki j

Nikki is right I have no help. The nhs in my part of the uk is basically non existence for me.

I shall have a read through much appreciated.

I am taking N_Acetyl cysteine supplements, heard they help with ones breathing. Desperately trying to look after my health myself.

GP refusing to prescribe me anything, saying its the neurologist job. The neurologist isn't returning my calls and keeps cancelling my appointments , 5 times in a row now.

Thank you Kim you are a star

 

[Sammy88]

Thank you Buglaw , I'll look into that .

 

[Buglaw]

The mir spirobank smart is super simple and easy to use. I set it up myself with no instructions in 5 minutes and got my first result thereafter. I cannot overstate how easy it was to use.

It was selected for the study by Emory/the people who make Radicava. So, I doubt it’s a total scam with multiple reputable als people using it. I also found on amazons website for their cheaper non-svc model that they instructed someone to contact them about how to purchase a svc version, so maybe try that.

While I’m sure it’s not actionable for insurance, I’d imagine if you showed up at an er and said my svc is 45 and I am choking at night let me see a pulmonologist, it would be fairly convincing.

 

[Nikki J]

I didn’t mean the spirobank is a scam. I meant the site that I found selling it to a non medical site address was a scam. The only other place didn’t sell to patients. I saw the amazon one as I noted peak flow and fev1. I already have those capabilities. I wish I had what you do Buglaw

 

[Buglaw]

Actually, have you thought about just showing up at the er by you, saying I have als, I think I have carbon dioxide poisoning, I can’t get a Dr. Apt., please run the tests so I don’t die at night.

During my diagnostic phase, I had trouble getting tests scheduled that weren’t 6 months out, so I just went to the er, and the hospital ran all them in like 2 days while they kept me over night.

 

[Buglaw]

Got it, sorry! I didn’t understand your post. Yes, I feel very fortunate to have it. I test myself every month or so and it takes a lot of the anxiety away about what my breathing is doing.

 

[Nikki J]

Breathing is really the one thing we can’t be sure to know how it is without testing. I think much as we are sometimes in denial we really know if we are getting otherwise weaker, swallowing poorly or losing speech. And it can certainly kill us which is frightening.
I searched for something similar to Buglaw’s device that might be more available and found a possibility. In exploring that I found what seems to be a reputable site selling Buglaw’s to patients. I did order it so will see if it turns up! Thanks for sharing the information