Has anyone on here been diagnosed with ALS but turned out to be Lyme?

[StuartEE]

Unfortunately on the 26th March this year I was diagnoses with ALS / MND we call it in the UK.

I've been on here a few time. First in 2016 when my twitches started mostly in my legs and calf. The EMG then showed "nothing sinister". My muscle cramps and twitches started about 6-8 months after a tick bit, which I did get a rash and then quickly declining health, where on a few occasion I'd be sent to hospital with breathing issues, heart palpations / pain and suspected strokebecaus3 the left side of my fave drooped.

The following years I was never right. My visits to the doctor about my muscle weakness resulted in physio. Cognitive issues was put down to stress. Sudden tinnitus I was told "it happens". Burning joints and muscles resulted the doctors saying we don't know.

Fast forward to Feb 2023 ( much of that journey then on is on here ) twitches started happening everywhere all the time several a second. I was sent to a MND clinic had EMG which was clean and the head consultant said it was BFS. This was on the basis of the EMG, and he said you don't have medically recorded weakness and twitching for 8 years if it's MND.

I had 4 EMG in 2023 as late as December 2023. Feb 2024 I had another and there he said its mnd. I believe he was very much surprised as I was.

What is making me angry is they are now saying I've had MND since 2015 when the twitches started ignoring the serious ill health months before that which required stays in hospital.

I know we all want to be that one who say they had Lyme not als and are well now. I've read about a couple of people who have, but it's literally 3 examples I found.

I may go down private testing as here in the UK it is beyond terrible. There is one basic blood test notorious be been poor, and if that is positive only then they will do a western blot test.

My symptom timeliness and history is far from typical I just want to make sure

 

[lgelb]

Hi Stuart, if you could post the EMG report with the diagnostic note, that would be helpful. Either way, though, I would strongly recommend a second opinion since as you say, your story is not a typical MND history. If you opt for a private opinion in any respect of this, that would be the one.

The notion that anyone can dx MND ex post facto back to 2015 is dubious to me.

The Lyme test that you refer to, seems unlikely to yield fruit several years past a tick bite. The sequence where they do a Western blot next is standard protocol. Alternative testing would likewise be a waste of your funds.

So I guess what I'm saying is, don't make this a case of Lyme vs. ALS. Rather, it is a question of re-evaluating whatever dx that you have received.

 

[StuartEE]

Im having 3 tests done. I asked for tests which are best looking for long term Lyme.

I'll try get my reports. I literally had an EMG them 2 months apart. One was fine one was not. I could tell by the neuro doing the EMG that it wasn't good. His demeanor suddenly changed while doing the test. He also seemed very surprised by his findings as this was the 4th time he did my EMG and knew about my history.