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Melissab

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About Melissab

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  1. Rick, best of luck with DBS this week!!!
  2. Stump, you are right; sorry for the mix up but thanks for the correction! Yes, I am right handed but tremors are on left. My concern was the shaking foot on right side!
  3. I was diagnosed with early onset PD a few months ago. Always, my tremor has been left side only and that's also where the MDS notes rigidity and bradykenisia. I am only on amantadine. I've noted my right foot tremoring a few time but usually it was after exercise so haven't thought much of it. Today on my way to work,while driving, my right foot was quaking on the gas pedal and I couldn't get it to stop without moving my whole leg away. I really hope this is coincidence and not progression. In my left side, my hand is most affected, so is it even normal to "skip" to another limb when it does start to progress?
  4. I am newly diagnosed with early onset PD (38 years old). For some time before my diagnosis I had vivid dreams of trying to run but being unable to move my legs quickly enough. Since diagnosis I have had several dreams of similar nature and even some of falling and being unable to right myself. I'm not concerned about these dreams, as my dreams are almost always vivid and somewhat scary, but I find them interesting, both in that they preceded a diagnosis and that they continue. Anyone else?
  5. How did you talk to others?

    Thanks to all for your comments. Even a week later, I feel better overall. A therapist is a good suggestion that I should probably look into more. I appreciate all the suggestions and support!
  6. Official diagnosis today

    I'm an avid runner, have been for years. It's actually one way I realized something was going on...I was so tired and just felt stiff and like my legs wouldn't "go". I plan to keep this up especially now! I do a low impact weight class a few times a week as well.
  7. How did you talk to others?

    I was just diagnosed less than a week ago at age 38. After a year of every test under the sun I was just relieved to have a name to call what was going on and "proof" that I wasn't crazy. My husband was with me at my appointment and I told my three closest friends (also coworkers) who knew of everything I'd had going on. I did not tell my mother as she is dealing with terminal brain cancer and struggling with guilt over leaving her family, but I did tell my sister. I presented to all of these people my immediate reaction, which as I said was relief. But now, a few days later, reality is setting in. The what ifs, the life I'd had planned both professionally and personally, worries that I have no way of knowing if they'll come true. And I feel like I can't say how scared I am because everyone thinks it's no big deal-I made it all seem ok. My husband tells me not to worry because things could be fine for a very long time, and no one else has mentioned it at all. On top of that, I don't want to be the needy friend-the one whose mom is dying and who now has this disease. I guess I am wondering how you talked to people early on about what you were afraid of and how you let them know how to support you. I fear this will be a lonely road. While my symptoms are mild now, it doesn't releive the worries.
  8. Official diagnosis today

    Thanks everyone for the welcome! I'm still trying to wrap my head around this and what it could mean. It's good to know there is someplace to go that people get it!
  9. Official diagnosis today

    One month exactly into my 38th year, I got "the" diagnosis and to be honest, I feel so relieved. I started this journey a year ago (officially) thinking I had MS and after all the tests, scans, pokes and prods, a handful of neuros and other specialists, and after finally seeing a wonderful MDS at Northwestern Medical Center, this is the card dealt to me. I told her I would hug her if she could just give these things a name. She said my stage is mild but I do have tremor, bradykinesia, and rigidity. I was truly beginning to think I was going crazy. For now, we will stay away from any meds other than Amantadine to help me fight sleepiness in the daytime. It will be nice to have somewhere to "go" and I look forward to getting to know all of you better.
  10. Diagnosed today

    Today I finally got confirmation from a movement disorder doctor at Northwestern Medical (clinic that Dr. Razak heads) and I loved her. She spent nearly 90 minutes with me and after she easily diagnosed me with bradykinesia, rigidity, and tremor she said I fell in the "minor" category for now. She did offer Datscan and genetic testing but for now I'm holding off and she was fine with that. I'll start amantadine tomorrow but for now I'll stay off all other synthetic dopamine meds. Thank you Dr. Okun for encouraging me not to give up. I was so sure I'd be told I was crazy. It is so worth it to see specialists in the area; the neuro I've seen is so well respected in the field of MS but this just wasn't his area and I am thankful he also referred me on! I feel like I know what I'm fighting now and that actually feels great!
  11. Worth it to pursue this?

    Thank you so much! Can I post a few very short clips for you to weigh in? This one is my foot cramping: This is my daily tremor: This is while walking:
  12. Worth it to pursue this?

    Quick update and more guidance appreciated. I saw the MS neuro today and almost immediately he seemed put off that I was asking about Parkinson's. I wrote down all my symptoms and when they started, frequency, and whether they were present when I first saw him. He looked at the list and asked if I'd read up on Parkinson's and for how long I'd been doing so. Pretty apparent to me that he was leaning toward this being in my head before he assessed me. He ran me through a battery of tests. He saw the tremor and I know I had a blank stare though he didn't mention it. I'm tired today. He was curious about my acting out dreams but other than that not impressed. He did not ask about my foot cramps or dizziness or dry eyes. No questions about slowness. When I walked for him he said my gait was fine (but I haven't had problems there) and he commented that my tremor wasn't present when I walked and that it normally would be if it were Parkinson's. Truth be told, I could hear them discussing this and I froze up with embarrassment. Today when I was walking with my husband I had a very noticeable tremor in my hand. I told him people had commented on my lack of arm swing which he said he saw but it wasn't extreme. in the end, he said the symptoms I told him of were consistent with Parkinson's but he didn't feel much rigidity (isn't that a separate category from bradykenesia? I personally could see that my left hand had stop start patterns with the finger taps. The limb twitching he said was not related nor are the two episodes of sleep paralysis (which I know but thought I should mention anyway). He said he wouldn't put me on levadopa but that I could see a specialist (which I do have an appointment for three hours from home). I left with another script for a MRI which I don't want and the same feeling I always get which is that I am crazy. So based on what he said should I just stop? I don't want to waste people's time. I'm tired of taking off work for appointments with no answers. I'm beginning to think I am indeed crazy. I took a video of my hand during my walk and am considering sending it to him and also letting him know that I didn't appreciate being talked about like a science experiment/child who was making things up. I should have advocated more during the appointment and I'm mad about that. I want to insist on a l-dopa trial before an MRI...is that too much to ask?
  13. I am 38 years old and for the last year have been dealing with mystery symptoms that seemed unrelated and took me down the path of being tested for MS (all MRIs and lumbar negative), all forms of food allergies, etc. my symptoms a year ago that initially lead me to a neurologist were some tingling in my right hand and arm, fogfiness, and insomnia. Over time, other symptoms that I had at the same time began to over ride those original concerns while the arm tingling went away (and now I wonder if that wasn't just purely coincidental). Here's what is going on now: Left hand tremor that I've had for years and only occurred very rarely is now daily. Not all day, but definitely daily. It's always at rest and my hand wants to form a "c" in which the tremor is a pill rolling action. Clinically diagnosed with IBS constipation variety by a GI who now wants colonoscopy and upper scope. I'm an avid runner and have had great difficulty getting going now. My shoulders feel so rigid especially in the morning that I often can't run. I did mention last year to neuro that sometimes my feet just don't seem to want to move at the speed they should, but I can't say anyone has noticed this beyond me. Typing is harder. My left hand sometimes doesn't move fast enough to catch what I'm trying to do and then I have typos. Not always, but often. I'm catching myself blankly staring into space especially if no one is talking to me. If I'm not having a conversation I blink maybe 3 times a minute. My sleep is awful. I wake up about 4 hours into going to sleep wide awake and can't go back to sleep. Or I kick and wake myself up. I'm so sleepy during the day I can hardly stand it. I'm in a professional job where I can't be off the mark. I've had left arm shoulder pain. No reason or injury. This is off and on for several months. Sometimes wakes me. I've had noticeable reducement in my left arm swing. It isn't like it doesn't move at all, but less. And if I think about it, I can make it swing. I've always had very low bp. Everyone chalks it up to being a runner and no one has ever thought it strange that I've gotten increasingly dizzy upon standing. The other thing I did mention to neuro but we never discussed was that my foot arch cramps (more easily on left but sometimes on right) with my little toes curling painfully under and my big toe pointing up. This usually happens if I move my foot a certain way (exercising often does it). Very painful. Newest are these quick, painless muscle contractions I'm getting in my legs and arms. People can actually see my limbs jerk and it occurs a lot. I haven't read anything to find this related to PD though? So here's the issue. My neuro (MS speciality) is seeing me in a few weeks but I'm certain he'll think I have this all in my head. I once asked about PD and he said without further discussion that it wasn't likely. I've made a separate appt with a Movement disorder doctor at Northwestern but that's after the other appt and it's three hours from my home. I do t want to go that far to be told I'm making this up, that my symptoms dont match up, that it's functional. I'm just looking for your opinion if I should pursue this or if that's likely what I'll be told. Thanks so much for any help!
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