Resently diagnosed with PD in skull

[Krispet]

Hi.

In january I was diagnosed with PD in skull. I am 45 years old. Had zolodronic infusion 2 Month ago and still feels a strange feeling in my when I try to sleep. Its like a sort of short dizziness that goes on for seconds - goes away - and come back shortly after. This feeling goes on in a while every time I og to sleep.

Have anyone expiried similar?

And How long before medication worked?

[Gretemie]

Hi Krispet,

I was diagnosed with PD in my skull last year, I am 47 years old now. My doctor is not a fan of zoledronic so I am treated with risedronate instead. I had to take 1 tablet each week for 3 months and my AF levells were better.

This dizzyness you describe, I have it too from time to time. Usually when I've had a stressy period. So it has more to do with tensions in my neck and skull base, I think.

It could be that your blood flow is a bit hindered by the deformations in your skull?

Do you have other complaints, pains, things you experience? I am curious because there aren't many people with the same condition as you and I. And the doctors say I musn't start imagining pains and discomfort but I assure you, I don't. My doctors never had a patient with PD before me and yet they think they know what I can and cannot feel.

[Krispet in reply to Gretemie]

Hi Gretemie.

Thanks for your response. In my country there are only 25 People diagnosed with PD. Mostly elderly, and nobody with PD in skull as far as I know.

I feel lower back pain, and have been told that PD is in my neck and left eye region. My doctors Will not recognize that my symptoms when I Lay down is connected with my PD in skull, althoug as you decribe, they have very little expirience with the disease. It is frustrating that they wont listen.

I went to the doctor more than 2 years ago because of my symptoms. I was told that it was stress related. After 2 years i finally got a MRI scan that showed a large area in my parietal bone. A biopsi was taking and they concluded PD. I was treated in january. My bloodtest and ALP was normal.

Still I have the same symptoms everytime I try to sleep. The doctors says that it is anxiety, But I know that it is not the cause. I was very worried in december, because the doctors thougth that What they Saw on MRI was cancer, But before and after I am okay. I am convinced that there is a connection between my symptoms and my PD, But nobody seems to care.

I hoped that my symptoms would disapear with the medication and that it was due to the High vascularity in PD area, But I dont feel any changes.

Sorry my bad english😊

[TSanders02251960 in reply to Krispet]

what country are you in Krispin?

[Krispet in reply to TSanders02251960]

Denmark. It is a very rare disease in Skandinavia

[TSanders02251960 in reply to Krispet]

it is rare in the united States as well, that's why the docs are confused about it

[TSanders02251960]

I have not experienced that. I have pagets in my right hip and femur. I had a Zolendronic Acid infusion last November 2nd. I hope you start to feel better. It was explained to me that it takes 6 months for the medicine be at its peak in your body. So hopefully you will feel better.

[Krispet in reply to TSanders02251960]

Thanks for your reply.

Okay. Maybe i have to be more patient. 😊

[TSanders02251960]

I too, had doctors who didn't know what to do with me because they were not familiar with Pagets disease but instead of getting me to a specialist they just said they didn't treat it, or one doctor gave me a pill, that I found out when I found a specialist that it wasn't doing me any good.

I totally understand your frustration with Doctors not believing our pains, even though they have not seen or treated Pagetts nor do they know enough to treat someone with Pagetts disease.

[Krispet in reply to TSanders02251960]

Can you feel any changes after zolodronic ?

I am beeing treatet by the Best specialists in my country - But as I wrote ealier there are only 25 People diagnosed. And they have a difficult time ansewering my questions.

[TSanders02251960]

I do feel changes from the Zolendronic acid. At first it took away all of my pain and I was feeling great, then the arthritis pain became worse of course when the weather turned cold her in Michigan, but the pain in my hip from the Pagetts disease has been much better and all over uckiness I had is gone, and the fatigue is a little better. I have hope now which is good. The infusion made my bones feel tighter.

I am having a test in the next two weeks that will show if I am in remission, I am hoping for remission, the Pagets was making my right leg bow so it is now shorter than the left leg and I have a lift in my shoe, I also have been diagnosed with Peripheral Neuropathy and am dealing with balance issues because of that.

I did meet a woman last year who has Pagets in her skull, she also has the rash on her skin. She works with a Doctor at Cleveland Clinic,

Wishing you luck and less side effects.

[Krispet in reply to TSanders02251960]

Sounds great. I am so glad to hear that you are doing better and that the medication works. I cross my fingers for remission👍

Thank you for replyes.

Best wishes

[Krispet in reply to TSanders02251960]

Hi TSanders

I also have the rash on my skin. It has started after getting the infusion. Mostly it is in my chin. Anyone expirienced similar?

[TSanders02251960]

The bone scan I had, my skull in the front lit up, but Dr. Henry Grady Bone lll, said that the MRI showed no damage to the skull. so I was lucky with that, so glad I was able to get into Dr. Bone when I did, he ordered the infusion and I know some don't like the infusion idea, but I do not know where I would be now with out the infusion.

[TSanders02251960]

I have not, sorry to hear that.