Will

Hi Carol,

Nice to meet you. From reading your posts, it seems like you’re in a similar boat to me: lots of worrying ALS-like signs with no other explanations offered and mimics ruled out, yet doctors say no ALS. While it’s obviously not the same as being 100% diagnosed, being in limbo, with ongoing, disruptive issues and the building fear (with…[Read more]

Given Clenbuterol is – I believe – a high strength asthma medication, used, among other things, to widen the airways in horses, I think there’s a good chance it will positively affect your father’s FVC and breathing. Dr Bedlack’s study showed a 90% slowing of FVC decline (if I recall) in the participants that finished the course of 6 months.…[Read more]

Hi Doug,

Thanks again for (yet!) another thoughtful reply. I’ve tried Ada and depending on how many symptoms I put in and how I describe them I have a various 2 in 10 to 9 in 10 chance of ALS, with few alternatives being offered and none that are plausible – I clearly do not have Parkinson’s disease or syphilis for instance (lol). At this point,…[Read more]

Hi Marcie,

Thanks for sharing that information. I am sorry to hear about your daughter. Dr Rothstein sounds like a champ but unfortunately it’s just not feasible – financially and logistically – for me to travel to see him. There are some very good ALS specialists, who both diagnose and research the disease here in the UK, thankfully, though…[Read more]

Hi Doug,

Thanks for the kind words. It was certainly good to have positive news from the specialist, although as I say, I continue to have progressing weakness and problems. On the atrophy I suppose I will just have to take their word. I am adamant that I have really quite severe wasting all over my body, particularly my arms, shoulders and…[Read more]

Hi guys

I hope you’re all well. I’m just posting to provide an update on how my exams and so on are going. In short: I’ve now seen a neurologist who specialises in detecting ALS and he has said that he does not believe I have it (which is good!).

Unfortunately, he was unable to say what I do have, which is frustrating as my weakness, atrophy and…[Read more]

I think the above replies have about covered it: lack of simple biomarkers and paucity of expertise in primary care providers and even many specialists. I’m currently in the throes of a possible ALS diagnosis and have been shocked by the amount of mistakes I’ve seen GPs and even neurologists who aren’t ALS specialists make. Few seem to genuinely…[Read more]

Thanks for taking the time to reply, Carol. I’m sorry to hear you got the diagnosis and I hope you are keeping as well as possible. It’s scary that it took you so long to find an answer and that the EMG – which is often touted on some online forums as a ‘gold standard’ perfect test – didn’t detect it until the third go, and when, presumably, it…[Read more]

Thanks Doug,

I appreciate the kind words. I am hanging in and trying to go about day to day life as well as possible while I wait for my specialist appointment. I’m reaching a point, however, where ALS or no ALS almost feels a bit irrelevant: I just want clarity.

From my experiences, and your own and many other stories I’ve read online, it seems…[Read more]

Hi guys,

Just wanted to update you with my situation as I’ve had a few changes. I haven’t yet managed to see an ALS specialist but I had a private EMG done the other day. Unfortunately, the test wasn’t as conclusive as I’d hoped. While the guy seemed authoritative, he only EMGed two points on my body – my hand and foot on my right side, albeit at…[Read more]

Thanks Louise,

I’m sorry to hear about your diagnosis but hope you’re keeping well.

Dr Bedlack, that name is familiar to me! I’ve watched quite a few of his presentations about ALS, and ALS reversals. I must say I was very disappointed to find out he’s based in America. He seems like an incredible guy and someone I would have loved to be treated…[Read more]

Thanks Steve,

I greatly appreciate you taking the time to reply. I am sorry to hear about your father.

The MND Association sounds like a great port of call – I’ll give them a bell.

Thank you again for getting in touch and please pass on my thanks to your friend too.

Best regards,

Will

Hi Doug,

I’m sorry to hear about your recent diagnosis but hope you are doing as well as can be expected. Thanks for your reply. It’s really helpful and I appreciate you taking the time.

So, unfortunately, these specialist MND/ALS hubs in the UK require a referral from a neurologist, so it seems like I’m going to have to wait for my local…[Read more]