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LeeMcConnell82 last won the day on February 25 2015

LeeMcConnell82 had the most liked content!

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About LeeMcConnell82

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    Advanced Member
  • Birthday 09/10/1982

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    New Mexico

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  1. LeeMcConnell82

    Still fighting for a diagnosis!

    Thanks Dianne. You were always one of the first to respond to my posts : ) Thanks otolorin! Megse, I started Sinemet about one and a half months ago. I have been on it before for a brief period of time a couple of years ago as well. The only side effects I have noticed is an increase in energy and sweating. The sweating is quite annoying as it takes awhile to cool down and stop. Just like any med it will effect everyone differently. If you're starting on the smallest dose then I wouldn't worry. There is very little to no harm that comes with it. Gardner, I have been symptomatic for about 4 years now, but have seemed to hit a small plateau. For the last year I have progressed very little and it seems though I have felt it the doctors can't see it as much. The one thing that caught my attention with my last appointment is when the doc noticed my head was tilted to the right and after the levodopa it was back to normal. I think my progression was in the form of worsening dystonia that may not be as visible.
  2. LeeMcConnell82

    Still fighting for a diagnosis!

    I'm not sure anyone out there remembers me (pretty sure I started out like this on my last post), but I'm back and still undiagnosed. Last time I posted I mentioned I was scheduled for a DATScan. Good news was it came back normal! Though my doctors say there is a chance it might have been a false negative. I am showing a small dopamine deficiency from a spinal tap and was started on carbidopa/levodopa. They also did a levodopa challenge, even though the knew it would work. The doctors are quite sure they have it pinned down to Dopamine Responsive Dystonia or PD. They are still scratching their heads at the progression though. They said I should be further along if it was PD, but will not rule it out. I fell like a new man since I started levodopa just over a month ago. I can now exercise, walk normally, and even run a little bit! I may still be undiagnosed, but at least my body feels free again! I need to remember to get on here more often. It always makes me feel better to know other people out there besides my wife and family care. Have a good night everyone! Lee
  3. LeeMcConnell82

    Finally a diagnosis?

    Christie, Thanks for the welcome back, though I wish there was no welcome back. I will admit, after such a long fight against a functional disorder it sounds much nicer than PD. I will still hang on to that very small chance it may not be, but I feel I am starting to come to terms with it. My Drs hated spending time with me. Probably because I second guessed their methods or reasoning as to why it was functional. Everytime I asked why it was functional disorder instead of PD, all I got was, it's just is. Not good enough for me lol.
  4. LeeMcConnell82

    Finally a diagnosis?

    Cynthia, I am feeling less stressed now and probably even more after the scan. I have done much research in most of the parkinsons sites, but love the people here. Discovery, My symptoms started back in 2010 with mental fog and loss of smell. Then went on to stiffness, pain, gait and balance issues. Then came the resting tremor in my right hand. Now I have developed a small one at the right corner of my mouth when nervous (super annoying). My right cheek muscles often pulls toward my ear, mainly feel it when laying in bed trying to go to sleep. Musicman, Golden is correct. My history with other neurologists have made my case a little more difficult. The fight for what it is has really caused me a headache. I have done the sinemet challenge, but it was ruled out as a placebo effect. This specialist saw PD right away in my handwriting, gait/no arm swing, and the fact that the sinemet did work. Golden, We are not going to stay. It's only a 7 hour drive for us so not that big of deal, plus I'm sure our cat wouldn't like us to be gone for to long. I do however want to go back for the walk, heh when I say walk i mean shuffle. We will eventually move back to Phoenix at some point for the better care, so I'm sure I will be doing something along those lines for help.
  5. LeeMcConnell82

    Finally a diagnosis?

    Ellaangel2, I saw a "MDS" here in NM. She is claimed to be an MDS yet I couldn't find very much info on her being an MDS, just that the hospital said she was one. So I'm not sure if she actually was one. Thank you for your kind words. I know I will be ok, knowing I have support from my wife, family, and you all on here. Lee
  6. LeeMcConnell82

    Finally a diagnosis?

    Dianne, I believe I'm still in the numb stage, but I usually bounce back pretty quick. I will try my hardest to poke my head in and give my two cents as often as I can. I am hopeful I do have some left as well. It will be a few months before I can be scheduled most likely. Takes to much out of us to keep going back and forth to Phoenix.
  7. LeeMcConnell82

    Finally a diagnosis?

    Hello to all! I don't know if anyone remembers me. I was on here a long time ago fighting for a diagnosis of any kind. I was in between being diagnosed with conversion disorder and YOPD. I finally have news after the 2 year fight. I was seen at the Muhhamed Ali Parkinsons Center at Barrow yesterday by Dr. Lieberman. After some physical tests and a talk he finally said what was on his mind (he obviously read my book of medical records thoroughly). He said he is sure I have Parkinsons, but doesn't want to start treatment until after I get a DATscan. So now I wait to be scheduled for that. I must say I am relieved the fight is finally over, but feel the kick in the gut at the sound of you have Parkinsons. Of course there is that tiny possibility the test will show negative results, I still feel for my wife who's dad also as PD. Not only does she help take care of him, she will eventually have to take care of my alongside her own chronic illnesses. I want to thank everyone who helped me get through those two long years and was there to answer any questions I might have had. I know it's been a long time, but I will try to be more active again. Lee
  8. LeeMcConnell82

    Referral to Neurologist

    Stump, I would be careful with your neuro sending you to someone she is buddies with. I had this issue and took a year and half to get passed it. I know all drs are not like this, but need be sure. I was told I had about 7 different things before she settled (PD was one) with conversion disorder. All her buddies didn't do exams and just said what she said. After a l dopa challenge and change in insurance I have answers. Of course I knew it was PD long before I saw the Nuero. I would just ask to go straight to the MDS.
  9. LeeMcConnell82

    Mild cognitive impairment

    Colleen, Welcome! I am unfortunately not on any meds right now, so no luck with meds causing it. I have had a very difficult year and a half with the drs. I was just diagnosed almost two weeks ago by an NP (was clinically diagnosed previously by an L-Dopa challenge). I go see another dr on Monday and my Neurologist appt. is on June 26th. New Mexico doesn't have a lot of quality drs. I blame my attitude strictly on PD, well that's what I tell my wife >: / Thanks for the warning on azalect too Johnny, I am going to ask for the sleep study referral on Monday. Luckily they just started doing home sleep study tests. Would much rather do that! My dad has a cpap and loves it. Sleeps so much better and doesn't toss and turn as much. I am hoping I can start meds and get a cpap this summer at some point. Thanks mentioning about the impulsiveness and how you deal with it. I have not seen much problems with impulsiveness. My main thing is I can't plan anything. I get aggravated when my wife asks me to pick what we are going to watch on tv. Even when it is a choice between two shows which we are obviously watching both.
  10. LeeMcConnell82

    Mild cognitive impairment

    Big ring grinder, I can only hope that stuff works on me as well as it works for you. My wife is going to get me some soon to try. I also need to get a sleep study. My snoring and restless keeps the wife up. Seeing as she is the one bringing home the bacon and keeping our health insurance going, she needs all the sleep she can get. My father in law (who is also a PWP) takes the melatonin + velarian root and seems to help. I have also noticed a huge change in my irritability. I get mad at everything and argue with everyone. I used to quiet and reserved, but now I have developed foot in mouth disease as well. It's hard keeping it under control sometimes. My wife is getting used to it a little and just ignores me. That's my cue to apologize and shut my trap. Beaus mom and discovery, I want to try luminosity. I can't afford it right now, but soon I hope too. I have heard good and bad things about it (mostly good). I will definetly try to get that 30% off as well. Coach, like you that is the toughest thing right now. I can deal with the pain, stiffness, and the other slew of problems, but this cognitive stuff is so aggravating. I really feel bad for my wife as I forget everything and my attitude is sub par at best. She is understanding of what causes it so she just lets it go.
  11. LeeMcConnell82

    MDS appt and still feel like no answers

    Mom When I hear about an "MDS" not doing certain things (like yours and the one I saw) it seems to me they are not an MDS or don't practice as one. It may be different everywhere, but what I have read is that an MDS gives the patient an hour or more and does everything from a lengthy physical examination to spends time with the family answering questions and helping them out as well. I can understand them not giving people that much time if it is for a second opinion, but they need to do the physical exam. I was told I didn't have PD by two neurologist and an MDS. I got my levodopa challenge and it worked very well, even though I was clinically diagnosed they still didn't think it was PD. After getting new insurance a NP diagnosed me just last week. Don't give up, they will eventually find out what's wrong with you. It can be a long and tough journey, but the people on this forum will help you through it.
  12. LeeMcConnell82

    Mild cognitive impairment

    Hello all, I searched for a topic on this issue and was unable to find one. Maybe I'm blind or one doesn't exist. I was told I have mild cognitive impairment after a cognitive function assessment. I am finding it more and more difficult to do basic everyday things. Driving is a horrible idea for me unless absolutely necessary, which is mainly done for doctors visits. I seem to forget what is next me instantly after looking in my blind spots while switching lanes. Is there a good way anybody out there has found to reverse this. I know it can be done. I have tried reading, but that only aggravates me as I don't understand a lot of what is being said. This is the most annoying symptom and the one that is not easily dealt with. Anybody relate or have suggestions? Lee
  13. LeeMcConnell82

    I'm at a loss

    Hello everyone! Just an update. I saw an NP yesterday and told her most of what was going on. She became very agitated that they ignored a clinical diagnosis. She did say I have PD but need the second opinion from a neuro to confirm it. I go on June 26th to the new neuro. Amazing what an insurance change will do for you. She wouldn't give me any levodopa which i understand, but she did give me some mild opiates for the pain till the neuro. Hope everyone is well!
  14. LeeMcConnell82

    31 with possible PD symptoms?

    Dr. Okun thanks for the reply and would like to give you an update I have profressively been getting worse. Much harder to get out of bed now days. I recently had a cognitive function assessments. The results were mild cognitive impairment. Soon after this test my PCP tried me on mirapex which had a small affect on me. I asked to be placed on carbidopa levodopa. He put me on 10/100 only at night seeing as he thinks it's function disorder as well. After a few days i was able to move slightly easier in the mornings. I took it upon myself to try taking a dose during the day with good results. I am still on one pill a day which i take in the afternoon so I am able to work out and feel good for about 4 or 5 hours. I have been told be others on the forums that this is a good sign it is PD. Luckily I am getting all new drs due to insurance change. How should i approach the new drs and can I have your thoughts on the carbidopa levodopa working and also with the MCI?
  15. LeeMcConnell82

    I'm at a loss

    I took the PAI RBANS Trail Making Test VSVT None of those mean anything to me either lol. The person that did the exams was a fellow. The other person that was there I guess to train him? Was only there for the initial interview and when they "revelead" the results. She barely even talked. The gentlemen that administerd the test was barely paying attention when he didn't have too. I'm really not worried about and feel the test means nothing other than my congnitive function is mildly impaired.