at my wits end do i have yopd? can datscan confirm once and for all?

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in an effort to keep this as brief as possible...

26 m in the pnw.

symptoms are hard to describe i feel rigid and stiff and my balance feels off. i dont fall or anything. legs feel wobbly and heavy. when i extend my arms my forearms and biceps shake and feels like there is some resistance. when i bend my neck down and chin touches my chest and then i move my head back up straight feels like an invisible hand is pushing my neck down as i move my head back straight.

just a general feeling of shakiness esp in shoulders even at rest (cant see). internal tremors and when i get nervous feels like my whole insides are shaking too.

clean mri, clean gastric emptying study, clean basic blood tests, normal stool tests, normal endoscopy no ulcer celiac h pylori. normal basic neuro clinical several months ago. no emg or nerve study yet. normal heart tests ecg etc

basically i am asking could this be yopd? any ideas? family is also at wits end and think its all in my head. can a DATSCAN confirm yopd once and for all?

grandpa had essential tremor or pd or both not sure.

drugs

several times domperidone and zofran in the summer

amitriptyline 20 mg for several months

colchicine 20 mg for several months

currently no meds

thank you!

0 likes, 3 replies

3 Replies

  • Edited

    Hi Mike,

    I'm sorry to hear this and it is understandably an anxious time for you and your family. My husband has had almost all of your symptoms and also the same test with the same results. He has at times a very shaky foot and his hand tremble especially his index finger. He wakes up at times in cold sweat and also feels an internal tremble and hot/cold patches.

    His father has PD and he fears this is what he also has.

    However, he has for the last three weeks taken Sertraline (50 mg) this has made a difference and he also seen a CBT therapist. It's not great but it has helped. Sorry going on but I want to try and put your mind at rest that this sounds like high anxiety. The balance could be an ear problem (which he also had)

    I called the PD helpline and although they can not give medical advice they were so good.

    We are not out of the woods yet, but there is a light at the and I am sure you are okay. It's just a really stressful time time. So try CBT and I hope all goes well.

  • Edited

    sorry to hear you are in such a state. you look to have done everything you can with the medical side so why not take things a little more into your own hands. you describe yourself

    as physically weak so try to build your stamina and strength. gentle exercise very regularly will help with balance and general well being. start gently with seated exercise and work up to a proper regime. make sure your diet is good. vitamin c and d are very good and I make sure my husband also has a good multivitamin. Your physical health must be worked on in order for you to positively identify what the problem is. take time off from worrying and get fit physically silky and mentally. the internet will give you advice on general fitness and wellbeing and brain games to sharpen your thinking. Stop the worry and tests and do something yourself to address this situation. The best of luck it will be hard work.

  • Posted

    I have the same. Pushed to the back of the queue due to the virus situation. I've been 2 years in waiting. From a good job to 'nothing', Typing now with one finger. Try simple tests e.g. cleaning, manual work, walking, excercise. My consultants unfortunately don't know what's wrong with me? I've taken every conceivable drug available with no effect. Keep up the fight. Look up 'ultra sound'.

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