ltd17
Member
- Joined
- Jul 24, 2017
- Messages
- 20
- Reason
- Loved one DX
- Diagnosis
- 07/2017
- Country
- US
- State
- MN
- City
- Rochester
Hi guys,
I posted a few times already here about my mother who has a possible diagnosis of ALS, but seronegative Myasthenia Gravis is also still being considered, but it cannot explain the hyperreflexia of her legs. So they think ALS and MG or maybe cervical radiculopathy. She has atypical things for both (for ALS: double vision at the start that disappeared with prednison and mestinon, for MG: Atrophy of deltoid muscles). Next Friday she will finally get an MRI of the neck while using her trilogy machine, as this was impossible before.
I was wondering if ALS patients here have gotten their PCF (peak cough flow) measured and if yes, if it varies.
I am wondering this because when my mother was admitted to the hospital in March with a possible Myasthenia crisis (weakness and not being able to breathe), she got 5 days of Immunoglobulin (IVIg). I Was looking at her charts and saw these results:
March 7th PCF: 90, admitted to hospital, Start of IViG 5 day
March 12th: PCF: 180, 1 day after last infusion of IVIg
March 15th: PCF 260
March 19th: PCF: 270
The better she felt, the higher the PCF went. Breathing also went better. The strength in her ams and neck did not improve though.
From what I understand in ALS the PCF would not improve with IVIg in ALS, so it seems to me that the IVIg reversed it? Am I drawing the right conclusion?
I posted a few times already here about my mother who has a possible diagnosis of ALS, but seronegative Myasthenia Gravis is also still being considered, but it cannot explain the hyperreflexia of her legs. So they think ALS and MG or maybe cervical radiculopathy. She has atypical things for both (for ALS: double vision at the start that disappeared with prednison and mestinon, for MG: Atrophy of deltoid muscles). Next Friday she will finally get an MRI of the neck while using her trilogy machine, as this was impossible before.
I was wondering if ALS patients here have gotten their PCF (peak cough flow) measured and if yes, if it varies.
I am wondering this because when my mother was admitted to the hospital in March with a possible Myasthenia crisis (weakness and not being able to breathe), she got 5 days of Immunoglobulin (IVIg). I Was looking at her charts and saw these results:
March 7th PCF: 90, admitted to hospital, Start of IViG 5 day
March 12th: PCF: 180, 1 day after last infusion of IVIg
March 15th: PCF 260
March 19th: PCF: 270
The better she felt, the higher the PCF went. Breathing also went better. The strength in her ams and neck did not improve though.
From what I understand in ALS the PCF would not improve with IVIg in ALS, so it seems to me that the IVIg reversed it? Am I drawing the right conclusion?