Evidence of Fungal Infection in ALS patients

[bigmark1954]

I thought the lumbar puncture was a pre diagnostic procedure to eliminate other conditions, as a screening protocol to isolate the possibility of MND.
My first neurologist ordered a LP, after a series of MRI's. He told me that he was looking for abnormal protein levels in the spinal fluid.

 

[tripete]

Mark I think you are correct. I asked for mine from a standard neurologist while I was waiting to get into a ALS Doc (it took almost 2 months). That way I could have everything done ahead of time and get to the diagnosis. I was so tired and angry with the whole waiting game of doctor visit after doctor visit that I had begun telling them what they where going to do. Now it seams we just wait for the next death watch visit so that they can evaluate us lab rats to see where we are at.

 

[affected]

OK I stand corrected - they don't necessarily do them on everyone here in Australia unless I suppose they have some reason to really suspect it is not ALS maybe.

However I doubt a routine LP would be used to search for the different fungi mentioned in that article but I could be wrong on that one too! Normally you have to decide to be looking for something and do the test accordingly. It's like saying I had a blood test and all was OK. We all know that they may take an alarming number of vials at any one sitting, each to have a different specific test done. If they forget to test for one particular thing it won't have shown up on the other tests.

 

[tripete]

Tillie I agree. We (by we I mean my lovely wife) did a lot of research and asked for very specific test for things that mimicked ALS, we then looked for anything that we could find that caused breathing issues and requested those test on top of anything the doctor could think of.

 

[Green Queen]

Wow I think I am pretty naive when it comes to my own health. I don't ask for anything, just go with whatever the doctor suggests. Mind you, if it is Mills we are talking I don't think there is anything they are not doing. I've got no blood left to give, the MRI lady and I have become friends and several EMGs in Perth and Sydney. Plus these you beaut prongs on my head and this fancy PET/CT in September. Hopefully that covers everything.
God bless, Janelle x

 

[affected]

Janelle, did you have a lumbar puncture or spinal tap?

 

[Green Queen]

Ooooooohhh...no. I'm not 100% sure I like the sound of an LP Tillie. I'm willing to do it I guess if it will help with a diagnosis. Thought either way?
God bless, Janelle x

 

[affected]

Personally I would want to know that they have something specific in mind to justify the procedure. I just wondered if you had one as I don't think they are a common diagnostic process here in Australia, but I'm not sure either.

 

[tripete]

Here are some of the things that are looked for in the Lumbar Puncture (they are from the Mayo Clinic website):

Information gathered from a lumbar puncture can help diagnose:

Serious bacterial, fungal and viral infections, including meningitis, encephalitis and syphilis
Bleeding around the brain (subarachnoid hemorrhage)
Certain cancers involving the brain or spinal cord
Certain inflammatory conditions of the nervous system, such as multiple sclerosis and Guillain-Barre syndrome

 

[tripete]

I have had two lumbar punctures, one in October to help with my ALS diagnosis and one about 10 years ago for other issues. The one 10 years ago did not go well as the hole never sealed and I continued to "leak" causing extreme headaches that lead to blackouts and vomiting. It was easily fixed by them putting a little of my blood in the hole to seal it, but it was two days of misery.

When they did this last one I mentioned it to them. They now do the procedure a little differently and have very few problems. I found it to be very simple and did not have any problems this time. I think it is worth it to rule out or hopefully find something else that can be cured.

 

[Green Queen]

Good thinking Tillie...they did ask me in Sydney if I'd ever had one. I said no, then I heard no more. I guess we'll see in September. But yes, it would have to be for a specific reason.

Thanks for the info Pete. I have been through MS and terminal cancer...they have now been ruled out however. As I said...we'll see what September brings.

God bless, Janelle x

 

[nebrhahe53]

I think those of us who are realists understand that a cure will not be found in time for anyone with symptoms now. I would also bet that when this disease actually has some progress made on it, they will discover it is not one disease, but many with the same outcome- death.

 

[bigmark1954]

Janelle, did you have a lumbar puncture or spinal tap?

Tillie

I thought a spinal tap ad a LP were two in the same? I thought the LP was just current terminology.

Pete, we all have the agonizing stories about the journey to a diagnosis. Mine took 4 months. I was pissed at the pace of the tests etc. Infact, the screening neuro told me about 45 days before my diagnosis, that he did not think I had ALS. He said he thought I had a pseudo bulbar thing.
I think the vast majority of us had similar dynamics in our screening timelines.

 

[gooseberry]

Steve did not have a lp. They didn't need it.

 

[affected]

I thought a spinal tap ad a LP were two in the same? I thought the LP was just current terminology.

Indeed Mark, correctomundo!

Because both terms had been used in the thread I used them both in case Janelle wasn't aware and said I had a spinal tap but not a lumbar puncture

Covering my bases lol