Getting a proper diagnosis

Hi, My husband was ‘sort of’ diagnosed with pd in 2017 but did not start treatment straight away as he preferred not to take drugs for as long as possible however in 2018 there was a noticeable deterioration in his health and general mobility so he started on Madopar, Despite increasing the amount he was taking it was not helping a great deal so he was given a different drug in addition, sorry I do not recall the name, the problem with that was the side effects which gave him an oedema in his left foot and ankle so he was told to come off it gradually and at the same time increase the madopar. that was during 2019. When the swelling went sown my husband was left with hard growths on his heal and foot which we thought must be related to the oedema but when he saw the Neurologist last week he was told they were not related and he needed to see a podiatrist. He was also told by the Neurologist that he may not have Parkinsons but Parkinsonium syndrome instead so he is now having to come off the Parkinsons medication gradually to see what happens, this will take 3 months so by the time he has his next appointment with the Neurologist he will have been off the tablets for 3 months. This all seems very hit and miss to me. In the meantime we have been in touch with his GP and he arranged an xray of my husbands foot and ankle. My husband does have symptoms that people with PD get, the sticking and falling, the stiffness and dizziness, trouble with getting dressed, loss of dexterity etc. So, now we just have to wait another 6 months to possibly get an accurate diagnosis,

Hi @k800mer,

Wow, it sounds like you and your husband have been really going through it. I’m really sorry to hear that your husband has had such a unpredictable journey with his health condition so far. Unfortunately, it sounds like it might be a bit of a waiting game until you get an accurate diagnosis which I know must be really tough for you both.

In the meantime, we have information on our website which might be useful to you and your husband and you can find it here:

You can also give our helpline a call and speak to one of our advisers about what you’re going through so that they can offer you more support on this, give us a call on 0808 800 0303.

Best wishes,