What would you do?

[omegamv6]

Afternoon all,

I have been stuck in the ALS rabbit hole for a few weeks now, constantly getting anxious and worried about it, I have now been to 6 medical professionals who all say no, I went to visit a private Neurologist yesterday who examined me and said the same, he said afterwards for self reassurance and peace of mind l can have a EMG test, l asked if it was necessary or just to keep me at peace, he said the latter. My question is guys how do I proceed with this? the test is obviously going to be expensive so is it more of a additional money making for them? I went to a Neurologist a few weeks ago and he was adamant l didn't need it, plus the fact that 6 medical people have said no, guy's any thoughts :unsure:

[Fishmanpa]

I'd use the money on professional help for your anxiety. The EMG won't solve your worry.

Positive thoughts

[pulisa]

Don't have the test. You won't get "peace of mind" anyway and will be effectively wasting your money on a test not based on clinical need. You have spent enough money on chasing a diagnosis you categorically don't have. Don't waste any more time and money but do treat your HA instead?

[omegamv6]

This is what the first Neurologist said, he said that if it was required he would have made me do it, but says sometimes even after this test some people are still not satisfied. I felt that yesterday's appointment was simply more a money making scheme, however he never emphasised that I must need to have it done, and the first Neurologist was saying it would only confirm his belief, hence he never wanted to do it.

---------- Post added at 14:15 ---------- Previous post was at 14:09 ----------

Obviously my own GP dissmised my thought at the illness, so any referral to a NHS Neurologist would have been snuffed at, and after the clinical exam l don't think I could have convinced them for a EMG test, so maybe you guys are right, I mean if a experienced Neurologist said I don't need it ( and to be honest he would have charged me the same), then it's just money going to these private Harley Street GPs.

[pulisa]

Any health professional offering a test not based on clinical need is on dodgy ground in my opinion. Why have unnecessary tests when there is no evidence that you need them? I think when you go via the private route you tend to get offered whatever tests you want if you can pay for them and that really doesn't work if you want to be able to contain your HA.

---------- Post added at 14:19 ---------- Previous post was at 14:16 ----------

These Harley Street people make a fortune off the Worried Well!

Save your money and put it towards some private therapy for your HA or work on it yourself? You sound as if you've got a good insight into how HA can spiral.

[MyNameIsTerry]

Any health professional offering a test not based on clinical need is on dodgy ground in my opinion. Why have unnecessary tests when there is no evidence that you need them? I think when you go via the private route you tend to get offered whatever tests you want if you can pay for them and that really doesn't work if you want to be able to contain your HA.

---------- Post added at 14:19 ---------- Previous post was at 14:16 ----------

These Harley Street people make a fortune off the Worried Well!

Save your money and put it towards some private therapy for your HA or work on it yourself? You sound as if you've got a good insight into how HA can spiral.

I agree. I think there is an ethical issue here that is just never addressed by the medical community, just like those plastic surgeons taking the money from BDD sufferers when they should be refusing the work.

I also dislike this attitude of "you could have a reassurance test" which is also a NHS problem that undermines the whole issue of the NHS being cash strapped.

Doctors should be firm with anxiety sufferers and not leave the door open for their subconscious to notice and doing exactly what we see in threads like this.

[omegamv6]

To be fair to him yesterday he said based on his clinical exam, there was no worry, however if I wanted total peace of mind then I could go for the test, but he never insisted on it, it was at that point in my mind that I thought well it's more money and if I was in a NHS situation could l convince them when they feel no need for it? My first Neurologist said from the onset that people hassle for these tests and even then are not satisfied sometimes, so maybe I should just put efforts on HA.

[pulisa]

To be fair to him yesterday he said based on his clinical exam, there was no worry, however if I wanted total peace of mind then I could go for the test, but he never insisted on it, it was at that point in my mind that I thought well it's more money and if I was in a NHS situation could l convince them when they feel no need for it? My first Neurologist said from the onset that people hassle for these tests and even then are not satisfied sometimes, so maybe I should just put efforts on HA.

Absolutely. Target your HA instead of worrying about a disease which the experts have told you that you don't have. You know that you have HA though.

[snowghost57]

I am new to this board and see many posts on HA. Have you tried medication for the anxiety? Many people state how much money they spend on tests, and how many doctors tell them every thing is fine. I would talk to your family doctor and see what is best for you. Just my two cents, I don't want to offend anyone.

[MyNameIsTerry]

Yep, tests provide short term reassurance for many and then in creeps all doubt again. Maybe the test was wrong? Maybe the technician missed something?

The mind is just working through risks but the anxiety associated with them because of the feared x disease means you jump on ones like the above.

It sounds like you have a good understanding of your anxiety which is a head start over those pushing for endless tests.

---------- Post added at 14:38 ---------- Previous post was at 14:35 ----------


I am new to this board and see many posts on HA. Have you tried medication for the anxiety? Many people state how much money they spend on tests, and how many doctors tell them every thing is fine. I would talk to your family doctor and see what is best for you. Just my two cents, I don't want to offend anyone.

You certainly won't offend anyone, it's a very valid point and good advice.

Plus meds are subsidised in the UK or completely free anyway, a years supply will cost far less than expensive neuro testing in many cases.

[snowghost57]

Thanks Terry, I don't want to step on any toes here. I just see a lot of HA posts and not many state they are on medication for this. I really don't know much about HA and didn't want to be out of line.

[pulisa]

I think quite a few people with HA are on meds but quite frankly meds are not enough on their own-there's a lot of work to do with your mindset too and it takes time, patience and determination.

[omegamv6]

Morning guys,

Well I should have listened to the good folk on here, despite getting told Not to have a EMG test done, my brain was going overtime on the matter, had it done on Tuesday it was all normal and for my peace of mind l also had it in the chin as I was concerned about perceived speech.
I feel like a right idiot now because whilst it has reassured me a bit, stupidly l am still convinced and always thinking about my speech, guy's is this the fact that my anxiety has made me think for the last few weeks and now I just can't get out of this feeling? I can't believe what I have done physically in seeing Doctors and Neurologists and I know nothing is wrong, how the hell do l get out of this speech anxiety? :wacko:

[Mindprison]

As many others have posted, reassurance will work short term but then you move onto something else to be worried about. Or you'll go down the slippery slope of "What if they missed something? You see reports all the time of doctors missing things, what if i'm one of those cases?"

Make an appointment with your GP and start focusing on dealing with the biggest problem, your anxiety!

CBT is very helpful for anxiety and depression if you don't want to go down the medication route, or you could do both.

Trust me, i've been where you are and it's a very hard habit to beat if you start allowing yourself to fall into the trap of constant reassurance and doubt.

I hope my words don't seem harsh, I have trouble putting things into words sometimes, I just don't want anyone to go down the same path I have where I spent months worrying about diseases and illnesses I didn't have!

You can do this, you're not alone and the professionals are there to help!

Best of luck!