Mis diagnosed

Hello everyone it has been a long time since I have written on here, I hope everyone are keeping well and I just want to let you know now I have scan number two so now the doctors are saying I don’t have Parkinson, but don’t know what is wrong with apart from the fibromyalgia and fibroids and also in the line of possibly going down a hysterectomy root, they have started to reduce my medication and god I feel trouble, I am up set for 2 years i have been taking this med and it made a difference and now they are taking it back off me, well I have no high hopes in finding out what I have but I did want to ask if anyone know if I have to pay for my medication if I have fibromyalgia please ,
Many thanks Raz


Hi Raz, I too have been diagnosed for 2 years and am waiting for a second opinion from another Neurologist. Did they do a DAT scan when you were first diagnosed? I thought that was the ultimate diagnostic test? My symptoms dont seem to fit PD but I definitely have something neurological happening. I had fibroids and was going to have a hysterectomy but was so close to menopause that they didn’t operate as they shrunk by themselves. I completely understand your frustration.

1 Like

Hi Raz
If you are on certain benefits any prescriptions you have are free you have to fill in the back of them.
You can purchase a prepaid prescription card. This is a one off payment for the year and you get a card that you show the pharmacist and you don’t pay. This is the best option if you have multiple illnesses and have medication. You can do this one one line.
I am not sure about if you are retired. What you have to pay for.
Hope this helps a little

Hi Julie

Oh I am sorry to hear that you too have been going though all this too, yes I have had 2 dat scans and they both have comeback with I don’t have Parkinson’s , but this time it has picked up some white marks on and around the brain which they say may be as I have migraines, I am turning 42
In November and am really not sure about having the option as worried about been on more medication, how are you doing in your self? It’s in a way nice to talk to someone who has been though a some what same path, I will keep you posted

Take care Raz

Hi Bub1

Thanks so much for the information I have got the pre cars but was just wondering about if I was paying and if I still needed to, I have not retired but due to my health am unable to hold dow a job, thanks again for your help

All the best Raz

Hi Raz
You are welcome.
As I said if you get certain benefits prescription are free together with dental treatment.
I am afraid you don’t get free prescriptions for fibromyalgia (I have it to).
I hope both you and Julie get some answers soon.

Hi thanks so much I hope you are right and we get to find out what we have or don’t have soon, i I think this is the hardest part now, I am sorry to hear that you too have fibromyalgia it is hard to control too, thanks again raz

Hi Raz
I totally get your frustration, I’m signed off sick at present but I just want some definitive answers. My son has become my carer which I dont want, I’ve been given 3 different diagnosis.
It’s a full time job trying to get support. The forum is great for sharing, hope you get some answers soon.

Take Care

Let the docters check your magnesium in your red blood cells. not just in your blood.
next month i start therapie EMDR , i hope it will help me. let you know how it went. succes

Hi thanks so much I will ask them to check that for me, all the best on your new treatment and please do Let me know how it all goes fingers crossed.

Regards Raz

stupid disease… it’s so awful…