Please help explain

[Isadora]

Hi everyone. I am You, 46 yo, female. English is my second language, so it's not that good. I received my discharged summary from my neurologist 3 days ago. I need your explanation please.....it says...." The combination of findings involving the internal capsules, corticospinal tracts and perirolandic cortical SWI signal raise the possibility of mnd/als. The differential would include metabolic causes and neurodegenerative diseases, however given the paucity of changes would make these less likely. Thank you all for your help.

 

[Nikki J]

This sounds like a test result summary not a complete clinical evaluation. Did you have an mri? Do you have a follow up visit? what were you told? You have put I have been diagnosed with ALS as your interest here but your question sounds like that is not the case.

If this is from an mri the last undiagnosed person who had similar findings did not turn out to have ALS. What are your symptoms and what tests have you had so far?

 

[Isadora]

Hi Nikki, thanks for your reply. I saw my neurologist on the 28th of September, and he basically told us that it's a possible ALS. I did lots of blood test, I am ANA positive, my CK is high, it's 160. Did 5 xmri's, 2x spinal tap, 2 x emg/ NBS, CT pet , was given 3 days of intravenous immunoglobin, 5 days intravenous IVIG. All these results wasn't mentioned by my neurologist, he just told me its possible ALS, we were very devastated and been crying since.

 

[Isadora]

It all started with falling/ tripping, then one day I have a weakness on my left hand, I wasn't able to open the door, after6 days, I am walking funny or gait problem. I have a hyperreflexia, clonus, Hoffman's sign, twitching all over the body. I am confused because sometimes . My hand weakness is worse in the morning and hight but day time it's a bit stronger. Thanks for your help.

 

[Nikki J]

You have every right to know what that statement was based on. The biggest things for the diagnosis would be your clinical exam and emg. The rest is mostly looking for other causes for symptoms though occasionally there can be a clue in the mri. There is current research on a combo PET/ MRI but not ready for clinical use and I don't think having the two tests separately shows the same thing.

If you are not seeing a neuromuscular specialist you need to. There are Australian members here who will chime in I know.

Did the IVIG help?

 

[affected]

Did you attend the neurology clinic at RBWH? That's where the experts are for you in Brisbane. They normally speak to you very clearly about what is happening.