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Earliest UNDIAGNOSED Symptoms of Parkinson’s Disease???? — 35 Comments

  1. This is an incredible post, DB…very much needed. I look forward to reading about other’s early symptoms of Parkinson’s.

    Early knowledge is so important.

    I do hope that you are feeling better these days.

  2. I’m only just now occasionally seeing a little tremor in my right index finger, but the fatigue and slow walking have been a problem for me for years. Thanks for taking the time to answer, and I wish the best for you as you deal with your Plus symptoms. PD alone is bad enough, so my prayers are with you, for sure.

  3. PD affects each person differently, so you’d expect any undiagnosed symptoms to be different, too. But, hopefully, Marion, we’ll end up with a sense of what someone should be on the lookout for, as different PWP post their comments. I’ve asked just about everybody in my PD blogroll to help out with their thoughts on this.

  4. Good to hear from you Rosemary. My wife and I discussed the answer to your question and we determined that there were two symptoms that had gone undiagnosed for a few months before I went to the doctor to find out what was going on. First, Karrie explained that I was very fatigued and would come home from work and just sit the entire evening. That was so very unlike me prior to 2005. She also said that this tired/fatigue factor showed when we went walking together. I had been an athlete, so my walking pace was always in the lead, with whomever I walked. This last year prior to diagnosis, Karrie said I would lag behind and no matter how she would slow the pace, I was always walking behind her.

    I was at the same time noticing a head tremor that became more and more persistent. Also, when I did physical work, such as shaping the hedges or fixing sprinklers, my arms and hands would feel weak and shake in a fine, regular pattern. I used to wonder if my blood sugar was low, because the shaking felt so odd. I hope this information helps.
    — Patient On-line
    Look up my blog at:

  5. Initially i thought my personal experience with PD began with an uncontrolable resting tremor of my left thumb.

    Looking back, now that I am armed with more knowledge I realize that I did have more PD symptoms that I just attributed to aging (even though I was only 38 when my thumb started to do its thing)

    The two “undiagnosed symptoms” that stick out the most are the “mental fog” and “difficulty turning over in bed.”

    When I first noticed “the fog” I thought I was just being forgetful. Then I realized I wasn’t just forgetting events, or names and faces. I was having difficulty coming up with simple words while I was talking. And, for lack of a better way to describe it, I felt like my mind was swimming through a river of fog.

    As for turning over in bed … my muscles were always sore in the morning (still are) and I attributed that to aging. I was never particularly kind to my body growing up- football, diving out of trees, jumping out of airplanes etc. So, when my muscles were so stiff and I couldn’t roll over in bed very easily, I just attributed it to my body rebelling for all the abuse it had taken over the years. I found out after being diagnosed with PD that it was actually one of the most common “early symptoms” of the disease.

    As a registered nurse I can tell you this: PD is not easy to diagnose. It’s symptoms initially mimic those of several other neurological disorders, especially those of MS and ALS. These disorders need to be ruled out before you can be diagnosed with PD. The good news is that those diseases can be ruled out rather quickly with modern technology such as CT scans, MRI’s and/or PET scans. Unfortunately with PD the changes that occur in the brain don’t show up with any of those scans until very late in the disease, so the diagnosis is usually made by ruling everything else out first.

    I wish you all the best.

  6. Thanks for the link, Bill. I really did enjoy reading your post, and I think it’s a story anyone who thinks they may have PD should read. I waited an excruciatingly long time to get an appointment with the best Neurologist my insurance would let me use, just so I would feel confident with his diagnosis. Since this disease is diagnosed based on the doctor’s experience, it’s super important to go to the right one.

  7. Thanks for taking the time to post, Joe. I, too, have had moments of total mental fog for many years. I really have the problem now to a much greater extent, but it’s been lurking a long time.

    As for turning over in bed, I’ve been sleeping in a recliner for maybe 20 years, both to alleviate severe sinus infections and due to degenerated disks that make lying flat very difficult. I do have trouble turning on my side in the recliner, though, and when I try to do any kind of floor exercises it’s all I can do to turn. Getting back up off the floor is a real chore.

  8. The first thing I would say to a person who feels he or she is getting a runaround from a neurologist… fire the doctor! Go to a movement disorder specialist! These folks are trained to recognize the early signs of what might be PD. Regular neurologists SHOULD be so equipped. My last non-MDS neurologist thought I had peripheral neurology. This was AFTER a PD diagnosis. When I changed insurance and was able again to see a MDS, she told me, “not only do you appear to have PD, but a fairly classical case of it.”

    Check my blog for more about “the early days.”

    And good luck!

  9. Hi, Rosemary, thanks for visiting me at my blog, and alerting me to this thread. I’d been having trouble with my computer, so I haven’t “seen you” in a while. My PD symptoms–right hand and arm tremors, began shortly after my mother died. I figured it was just stress. But then I got the cramped handwriting, etc, very classic symptoms, so I was easy to diagnose. In retrospect, I think right elbow pain, which preceded the advent of the tremors by years, may have been related. I was depressed and, later, apathetic, too, but so much was happening around my mother’s death, I can’t say how much was the PD and how much was the situation. Take care.

  10. Hi MM! It’s not your computer that’s at fault. I just haven’t been blogging much lately. I do appreciate you taking the time to add your comments here. I had right elbow pain long before the PD diagnosis, too.

    I’m noticing a common thread of high stress jobs or care giving situations. I wonder if there’s anything to that???

  11. Rosemary, can diagnosing Parkinson’s earlier change or control the course of the disease? Your blog has to be of tremendous help to many. I hope you are able to have some good days.

  12. I really can’t answer your question with any surety, Shelia. I do know, however, that being in good physical condition and eating properly are super important for PWP. So, if nothing else, knowing earlier might make the difference in being motivated to get the weight down, eat right, and develop a lifelong exercise habit. Nothing available so far has any effect on the actual Parkinson’s. All treatments are for symptoms only.

  13. Shelia, DH wants me to add that it gives your support group more time to help you adjust, modify future plans, evaluate investments and insurance, remodel house, etc.

    For instance, for the first time in my life, I’m seriously researching Long Term Care Insurance.

  14. Hi Rosemary, Tami here….

    I am now 49 years old, I have had Parkinson’s for 10 years now. And I remember the first symptom … I thought maybe I had some low sugar problem because the inside core of my body felt like it was shaky… the next thing I noticed was a consistent tremor in my left hand when I held the phone to my ear.

    I have found one thing that has resurrected my enery. It is a vitamin drink called Reliv. I found that this drink has given me back the energy I had lost. you can research it online.

    I don’t like to talk about it because I don’t want people to think I am pushing a product. But I am so thankful to have energy.

    Take care, talk to you later.

    Tami

  15. I can remember wondering if I had low blood sugar many years ago, Tami, as I would get uncomfortably shaky at times, but inside, not outside, if that makes sense.

    Thanks for the Reliv suggestion, too.

  16. Yes, I was shaky on the inside then and only on the inside, now I am shaky on the outside too!

    I have had two special brain scans where they actually see how much dopamine I have left …. I go to New Haven CT every other year for this… It is interesting.

    well take care… talk to you later.

    Tami

  17. I think Tami must be talking about a PET scan. From what I’ve read it’s very revealing of the extent of dopamine loss, but not all insurance companies will authorize it. I guess I need to find out if mine will, eh?

  18. Ah, thanks for elaborating, Tami. I’ll certainly be keeping tabs on this SPECT scan. I appreciate the links, and I’m sure others will, as well.

    Hey, the deep breathing sounds like a good idea, and certainly worth trying.

  19. The scaan is called a SPECT scan. here is a link to the site that is in charge of the clinical trial I was in.

    http://www.indd.org/index.html

    Here is a link about the scan…

    One recently completed trial designed to improve the accuracy of Parkinson’s diagnosis was an X-ray study, using a SPECT (Single Photon Emission Computed Tomography) scan to see how much of the dopamine nerve cells were damaged. A SPECT scan looks at the brain function in contrast to a CAT scan or MRI scan which looks at the brain structure. Since the nerve damage is microscopic, the SPECT scan uses small doses of radioactivity to help doctors determine how many dopamine nerve cells are functioning properly. The SPECT scan can also follow the loss of dopamine neurons over time, providing a view of how fast the Parkinson’s is progressing. This special way of diagnosing Parkinson’s should be available for use in most hospitals within the next 5 years.

    Research keeps researching a cure!

    On a side note, I heard and am trying something… if you breathe deep and regular for 10 minutes when you go to bed it is said that the extra oxygen gives you an extra hours benefit of rest even if you sleep just a little. Worth trying.

    Good night.

    Tami

  20. I want to thank Rosemary for starting this thread. It has been extremely helpful, unfortunately I can relate to many of the symptoms everyone has shared but it will get me off my butt to get a better Neurologist!
    Ted C.

  21. I’m glad you suggested it, Ted. It’s been a very interesting thread, and I hope it continues to get comments from other PWP.

    By all means, find a Neurologist who is experienced with diagnosing Parkinson’s and has a lot of Parkinson’s patients. Better yet, if you can, go to a Movement Disorder Specialist.

  22. Excellent post Rosemary and interesting comments as well.

    It is important to pick up the signs as many doctors being under pressure with too many patients often miss them.

  23. Jackie, you’re so right about doctors who don’t take time with each patient. Some, I’m sure, really are that busy, but I prefer doctors who make me feel unrushed. There is no way to easily diagnose PD, so the diagnosis depends on the doctor’s expertise.

  24. I have enjoyed both of them, but I haven’t much lately. I guess because everything is on a pretty even keel right now.

    Take care, I pray you sleep well or at least rest…

    Nice chatting…. Tami

  25. I don’t know if you have enjoyed the benefits of “Ask the Doctor” through the National Parkinson’s Foundation … but it is awesome.

    I put the link below…

    Tami

  26. It’s been awhile since I spent much time at that forum, Tami, but I’ve been impressed by it, too. Have you checked out the Nutrition one and the Speech one, too??

    Your link got cut off, so here it is again.

    Ask the Doctor

  27. I went today and took a look at a lot of the posts there. I’d forgotten just how good a site that is! Glad you reminded me.

    YOU take care, too, Tami.

  28. How about the olfactory sense?

    My father and I both have PD. In retrospect we both realized that we lost our sense of smell about 5 years before we had any other symptoms.

    Seems odd, but I know the Pennsylvania Hospital Center for Parkinsons and Movement Disorders was running a study on this last year.

    My sense of smell is so non-existent that I have to keep a canary in the kitchen just to detect for gas leaks 🙂

  29. You are right, Tom. Losing the sense of smell is one of the early symptoms for many PWP’s. My mother had Senile Parkinson’s, and she lost the sense of smell many years before it was obvious that she was deteriorating mentally.

    I followed your link back to your blog, but I couldn’t see any posts. Is it a new blog, or is there a problem?

  30. I’ll add your link to my sidebar, and we’ll all look forward to seeing your blog develop. Yours is the only bog I have seen for Young Onset Parkinson’s (YOPD).

  31. Hi Rosemary-

    Thank you for this thread. I’m still undiagnosed and 36 years old. I’ve had these same internal/shaky tremors many of you have experienced for over 2 years now- explaining just as I read here, I feel shaky on the inside, but it can’t be seen on the outside. Just over a year ago my symptoms progressed to include new twisting in my toes and fingers (Dystonia?). Swallowing difficulties started about 6 months ago, and last month I added a visible left thumb tremor (at the base of the thumb) that will have the phone whacking me in the ear if I try holding it with my left hand- ha!

    I’ve seen 4 neurologists in the 2 years now, who’ve decided I’m just suffering from severe stress/anxiety because I’m ‘too young’ for these ‘problems’ and because my symptoms aren’t visible and/or believable to them (yes, one neuro lady doc told me she would have to ‘see’ my twisting toes to believe me as she was sure I am researching this up on the internet and in need of serious ‘mental therapy to learn to accept my denial of my severe anxiety issues’). When I went back to my primary doc after seeing her, he told me he was sure I was just ‘doctor shopping’ now and he didn’t want to see me back until after the first of the year. Can you believe these doctors exist? They do!!

    But, I’ve had heart problems, autoimmune diseases, vitamin deficiencies, Wilson’s disease, hyper/hypo thyroid conditions, and MS all ruled out- clean/negative/normal on all accounts- ha! Last week I found a new primary doc who told me he believed me and quizzed me if I’d ever been through a PD exam/work-up. I’ve started Requip and he wants me back in January! The Requip I think is already helping!

    General neuro docs just are not equipped in my opinion to ever diagnose a patient with a MD.

    The early symptoms people have shared here on your thread are my life. I started having severe migraines at 13, writer’s cramping at 17, at 29 my migraines abruptly stopped as my sense of smell diminished rapidly. I still have some smell, but not like I used to. The stiffness and pain began after the birth of my son when I was 31 and that’s when I got my first diganosis – ‘Fibromyalgia’. I’ve lived with that diagnosis for 5 years now and with new symptoms developing (above) over the past 2 years, I know that Fibromyalgia was a misdiagnosis.

    Sorry for my long post.

    Thank you again for your thread, I will read away and see what more great posts I can find here and maybe my words can help other undiagnosed people suspecting they have PD know they are not alone and that they should never give up until they find that doc that is committed and wanting to help them!
    CD

  32. Thank you so much, CD, for taking the time to write your full story. Your quest for help is bound to be of help to someone. Please come back any time. I look forward to your comments.

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