Tests

[Legs-alive]

I’m so fed up of having test after tests after test, is it my choice wether I decide to have them or not? I do realise it’s all for my benefit but after 9 years of having them I’ve had enough & they’ve now decided they want me to do another 2, but just the thought of having them is making me so stressed & tearful, I really don’t want any more but I don’t know where I stand if I refuse to have them.

[wobblybee]

It is entirely up to you, no-one can force you to have any tests. I’m in a similar position myself at the moment. Because I’m still Idiopathic, I’ve opted to take any test offered. Obviously not in the hope of a cure at the moment, but because I’d really like to know if I could have passed this on. There’s a test coming up that I’m not looking forward to, it involves a trip to London, and I live in the NorthEast 😏 But, I feel if I don’t go I may be ‘overlooked’ for any further testing, and I’ve been chasing this for many years now.

Is the unpleasantness of the tests, or the fact that nothing is being found that you find so upsetting🤔 xB

[Legs-alive in reply to wobblybee]

Thanks for your reply, I think it’s the fact I have had continued tests & scans for the past 9 years, I think after so long it becomes soul destroying & wears you down so much when you keep getting told the same thing over & over- we can’t find anything! I have been in tears all day at the thought of even more tests they want me to do again.

[ddmagee1 in reply to Legs-alive]

I had tests for years. I was finally given a diagnosis of suspected demyelinating disease. I had that diagnosis for about 4 years, then I had more symptoms, many were very subtle, such as numbness, and walking problems. Finally, after several weeks in hospital, testing for what they thought was a brain tumour, because the MRI showed something at the cerebellar pontine angle of the brain, I was catheterized and the neurosurgeon found an artery pressing in on my cerebellum, attached to the brain, causing my problems. So I was diagnosed with Cerebellar Ataxia. It is an inoperable condition, and it took about 8 years to get that diagnosed. So, I guess I'm telling you that patience sometimes pays off. Then, about 30 years later, I started having different other symptoms, such as tremors, muscle rigidity, loss of taste and sensation at times, balance problems etc. I had several bad falls and finally, after about 6 years with no concrete diagnosis, my daughter helped me move from our small town, where there were no specialists, to a bigger city, where there is a regional hospital and neurologists. I was referred to a movement disorder specialist and, after tests and a medicine trial period, I was diagnosed with Parkinson's Disease. All the years living without a diagnosis, were difficult, especially at times when I just knew that my body was telling me that something was seriously wrong, and my doctor could not give me any answers, making me feel like I was a "turkey" ( so to speak ). So, I hope my rambling story has encouraged you to NOT give up seeking answers. If you feel your body is telling you something is terribly wrong, it very well could be. I would at least venture to get 2nd and or 3rd opinions. Sometimes, tests can't definitely point to a particular ailment, but that does not mean that there is nothing wrong, as I have found out. Good luck on your quest for answers, and please keep us informed on how you are doing!

[Litty]

Definitely say no!

At the end of the day your body is your own responsibility and the experts may want to know what is causing your problems but if you do not need to know, do not have any more tests. If you do not need/want to know why? TRY to enjoy your life - none of us know how long we have.

x

[Legs-alive in reply to Litty]

Thank you so much for your reply, after 9 years of tests & 9/10 coming back inconsistent or clear I just feel like I’ve had enough & really don’t see the point in having them anymore. I’m used to my life as it is now tho & every time they mention another test I dread it then get my hopes up hoping they’ll find something only then for it all to come crashing down again when they don’t.

[Happyfacexx]

I do feel for you, I’ve had about 8 years of test , which kept changing as my symptoms changed and finally I was told it’s sca 6 The main benefit of finally getting a diagnosis is that people that my illness more seriously. And are a bit more understanding and also I had letters to take to my PIP assessment , I don’t know if I will qualify yet but do feel I would have had a lesser chance without my neurologist and doctor letters(, I never even thought about getting financial help before because I kept thinking I could be healed, but have now been told there is no treatment, ) I wouldn’t have any test that carry risks attached like a lumbar puncture for example, I have refused a few tests in the past. Remember at all times you are in charge and are more than capable of deciding what’s best for you, we might be ill but we should never give our power away . good luck

[Sunny8088]

Agreed with you

[pollybanana]

I have had numerous tests over the last 7 years or so, including a lumbar puncture. It is very soul destroying to have them and not have an answer to explain my symptoms. Each time I think I will have the test if there is a smallest chance of an answer. It would validate my condition, although I know that it is real and probably remain idiopathic. I too am going to an Ataxia centre next month referred by my local neurologist. I don't know what to expect but I think I am still clinging to the hope of some validation. We all have to decide what is right for us. I am sure you will make the right choice. Jan

[Legs-alive in reply to pollybanana]

Thank you so much for your reply I absolutely get you & I think after 9 years of tests including the lumber puncture & 9/10 coming back inconsistent or clear I just feel like I’ve had enough & really don’t see the point in having them anymore. I’m used to my life as it is now tho & every time they mention another test I dread it then get my hopes up hoping they’ll find something only then for it all to come crashing down again when they don’t. This is my ataxia specialist in Sheffield requesting these tests as well as the others I’ve had there & before hand.