Am I going mad?
Hi there,
I've stumbled here looking for advice if I may?
I'm a 38yo woman, wife, mother and step-mum. I work full time as a legal secretary in Sydney Australia. I have Hashimoto's Thyroiditis (thyroid autoimmune disease). About 2 years ago, I notice a tremor in my left pinky finger. It can get quite annoying and family members and friends have noticed. I went to my doctor and ended up having to push to see a neurologist as it kept getting written off as nothing. I went to the neurologist who also said "Your MRI is clear, you're fine, it's stress". I left feeling dejected as I know how my body reacts to stress, this wasn't stress.
Well, fast forward 2 years, I've since moved back to a major city where I saw my old physician. He sees all my family members, he said "it's nothing, you're fine, it's just a tremor some people get sometimes". I don't feel fine!
Along with my tremor, my legs are now cramping constantly where my feet turn in and my toes either curl under or up, my joints (shoulders, wrists, fingers, hips, knees and ankles) are SO stiff and sore, I have random muscle twitches (like a tick) mostly down my left side, a tremor in my jaw that is constantly there (a recent trip to the dentist and she straight up asked "Do you move your jaw a lot?"😉 I'm exhausted and lightheaded a lot and my balance is terrible. I could go on, but I think you get the picture.
I feel like I'm going mad and like I'm over reacting, then I don't because the cramping is getting quite painful. I want to go back to a different doctor and get another opinion but then I'm afraid I'll get told again it's nothing.
What would you do if you were in my shoes?
Any advice would be very helpful.
I really appreciate you taking the time to read this.
Batty
Sounds like Parkinsons in some form to me. I would go to the best university hospital near you and ask to see a movement specialists. I saw 15 different neurologists before getting an accurate diagnosis. Movement disorder specialists are better than regular neurologists at diagnosing young onset Parkinsons. I didn't even have tremors, but the diagnosis of parkinsons was correct.
- Thanks so much for sharing here. I can imagine you're going through a lot of feelings right now, but I'm glad to hear you're advocating for yourself.
Asstated, seeing a movement disorder specialist (MDS) is an important step in getting an accurate diagnosis. If you need help finding an MDS, we have this article which links to a provider finder: https://parkinsonsdisease.net/answers/find-a-movement-disorder-specialist. I hope this helps! Please keep us updated if you can. - Chris, ParkinsonsDisease.net Team No you are not mad and not batty. I spent 10 years going from doctor to doctor and no one ever piecing my symptoms together. I do not have the typical outward motor symptoms of PD. I have many of the non motor symptoms. Constipation, night cramps, muscle cramps, idiostatic hypotentions, dizzyness, balance issues and a continuous throbbing all over my body to name a few, along with left side tremors. I also suffer from severe spinal arthritis. After three years I finally found a good primary doctor. Gave him a list of all my symptoms/problems and he immediately sent me to a neuroligist who diagnosted me with PD. Along the way I was given too many medications ( my initial meds were too high a dose for me which gave me side effects that mimic PD symptoms and more meds were prescribed. Last year I finally weened off all those meds and now just take sinemet and gabapentin) The right doctor and correct meds make the world of difference. Be your own advocate You know your body. don't give up or get discouraged.
Cmarie, I am so happy that you found the right doctor to prescribe the right medicine for you to feel better. As you are aware, not all medicines work the same way with all people. Like you did, Parkinson's individuals should seek out the correct medicine for their situation. Consequently, I went to a Neurologist that specializes in movement disorders was beneficial for treating Parkinson's and medical management issues. I also agree that you need to be your own advocate an not being discouraged or giving up. Wishing you the best, Marc M., Moderator, ParkinsonsDisease.Net
