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Have You Ever Heard of Parkinson’s PLUS?? — 6 Comments

  1. Thank you for that link on Patients like me; it was the first time I found a person who had the same symptoms as me including finding a term “hyposomnia” which six doctor’s haven’t seem to have heard of. Reading down one woman’s list I was going “That’s me” (next symptom) “That’s me! I exist!” (sorry, just when you tell doctors symptoms and they say stuff like “That’s impossible” or “I’ve never heard of that” you get a bit “do I exist?” – thanks so much.

  2. I’m glad you found some comfort in knowing you are not the only one with your set of symptoms, Elizabeth. I’ve been really impressed with how well that site is put together, and how useful I’m finding it to be. I am a little confused about one thing, though. Are you a Parkie, or do you have MS?

    Oh, and I noticed on one of your blog posts that you read Wheelie Catholic, too. Isn’t she fantastic? Reading about people in similar situations, who are making the best of it, is a real inspiration.

  3. I am an unknown mystery neuro thingy – and will be getting a MRI in a few months (remember this is Canada – free but SLOW) – The onset of symptoms seemed to severe for most neuro but are definately neuro – so there may be two or more conditions (which sounds like winning two lottos at once?). I have 5 specialists, no three can agree on anything as yet. One thinks I have MS “for certain”, another thinks I do not, but that a) something is causing my nerves in my lower body to die and b) something else is blocking my neural pathways but IF it can be found, that can be reversed. So, I am interested in all Neuro because they seem to be less talked about, less blogged about the sort of “silent” members (because you aren’t going to see a neuro person in a wheelchair racing in the paraolympics exactly).

    I can give you the whole long list if you want. I am interested because I want to understand ALL the different conditions whether I have them or not.

  4. Oh My! Months????? I would die of absolute impatience if I had to wait that long!

    I have Peripheral Neuropathy, too, but it’s not bothering me, except for making the walking a little harder. Of course, it could be part of the Sleep Apnea and the elimination problems, but there’s not going to be any way to tell where the PD symptoms end and the PN ones begin.

    By chance, have you had Gastric Bypass surgery or lost a great deal of weight in a short period of time sometime in your life? I ask, because our older daughter was almost paralyzed almost two years after her surgery, and still has problems related to it.

  5. Ah Peripherial Neuropathy, is that what it is called. My neurologist seemed to be on speed, talked very fast and while it seemed to be clear in the office once we left it was sort of the realization that either way it would be months more of tests before any treatment is attempted. I was recently told that I should have a complete dianosis within 2 years or so (seriously, they weren’t joking).

    Yes, I lost massive amounts of wieght in a short period of time several times in the last 5 years. Was a corrolation connected?

    What concerns me are the number of people I have run into (in my city) who have what I would consider very severe conditions which at the end of the day are labelled “undiagnosed” including one man who has creeping paralysis from feet up – it is now past his waist. Undiagnosed?

    How long was your PD diagnosis if I can ask – I notice that on the Patients like me some people have a very rapid onset of symptoms and diagnosis – which seems to be not medically acknowledged here.

  6. You say there are others nearby with severe neurological problems, too? You may have been exposed to some environmental toxins. We live within a quarter mile of the worst EPA site in our state, so that was the first thing the doctor checked. I had to keep all urine for 24 hours for that test. Have you done that yet?

    Our daughter was in and out of the hospital something like 60 days last year, dealing with her PN and problems with the Groshung catheter they used to get her nutrition level back up. So, PN may well take a lot longer to diagnose than PD. I don’t know about that. But two years! Makes me glad I don’t live in Canada, and sorry that you do. Have you considered getting an appointment with Mayo, or some other recognized center in the US? I know the cost would be high, without insurance, but maybe there are other ways to get help with such an appointment.

    You’ll want to read the Mayo findings on Gastric Bypass and PN connection. Her problems showed up almost 2 years after she had lost all the excess weight.

    As for the time lag between onset and diagnosis? Once my symptoms were recognized by my Orthopedist, and he sent me to my Neurologist, it was just a matter of months. The Neuro actually said he thought it was PD when he watched me walk, but he did a bunch of tests and used the Sinemet Challenge before giving an official diagnosis. I can look back, though, and see that I had the beginnings of all this at least 7 years ago, maybe more.

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