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  1. #1

    New symptoms...again

    Seems like there's a plateau of my symptoms. Sometimes for years everything will be steady enough that I feel like I'm improving.

    Then there are years like this past one where new symptoms come on like wildfire and scare the hibbery-jibbery out of me.

    New this round: wobbly walking (complete with wild arm flapping), 'grippy' left hand/arm (it keeps going into this hold- pointer finger and thumb straight, middle finger crooked and hand tucked towards me), random facial tics, spasms in my lower gut that last for hours followed by bowel urgency/pain, biting my tongue/protrusion, inability to hold up my head when tired (only happened twice this year so far), losing my words (can't tell if a word I use is right or not and I reuse lots of words often). Most obvious is my head shaking that I seem to do often now. Many more symptoms appearing now that I think about it- but hesitate to go into it as to fear of being whiny.

    Hubbs is going to school right now so in a year we will have insurance again. I'm so ready- test me, poke me, smear mah bloods- whatever it takes!

    Then sometimes I wonder if I'm making it all up. Then an episode happens and Hubbs gets scared, or my best friend gets scared when they watch me wriggle or bounce around.

    Anyone else have anything like this? How do you, personally, deal with new symptoms? How to help those I love not feel that fear so much when they see me? I am still me- just...shorter and wobbly as of late.

  2. #2
    I am having new symptoms quite often. Just now I have lost a lot of the sensation on half of my butt. Sometimes it is coming back after a while and sometimes it doesn't. It is nothing to do with it, I don't even tell my doctor anymore. The time I lost the walking, I didn't tell my doctor for a year, I forgot it. After trying to find a solution, I have even mailed Wise, I know I can't change it and as long as it is only sensation, I don't care too much. I have to wait two years to see a neurologist anyway, what can he do after two years. I am greatful I can still wiggle my toes, move my ankles and knees, I think I am lucky because it makes transfer so much easier.
    TH 12, 43 years post

  3. #3
    I hear you. Sometimes I wonder what's the point of telling the doctors anyway? Like going to the ER for pain- they do nothing. I know there are doctors out there who care so deeply for their patients- I want to know where they are and I will go to them.

    I'm sorry you are having difficulties.

  4. #4
    Moderator jody's Avatar
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    those are some wild symptoms.
    have you had a MRI of your brain or catscan?
    your biting your toungue, and facial ticks, and losing your words are all symptomes of a stroke or seisure of some kind. even the wild flapping arms could be too.
    If that were happening to me id be at the Er getting the inside of my head examined.
    at the very least seeing a neurologist asap.
    I had symptoms like that when I had a head injury. swelled up brain from a hard impact.

  5. #5
    Quote Originally Posted by jody View Post
    those are some wild symptoms.
    have you had a MRI of your brain or catscan?
    your biting your toungue, and facial ticks, and losing your words are all symptomes of a stroke or seisure of some kind. even the wild flapping arms could be too.
    If that were happening to me id be at the Er getting the inside of my head examined.
    at the very least seeing a neurologist asap.
    I had symptoms like that when I had a head injury. swelled up brain from a hard impact.
    They thought I had a stroke a few years ago- nothing on the scans to indicate one though. Thought I might be having diabetic seizures- but my blood sugar was normal when it would happen. I notice it more when I'm tired, emotionally 'buzzing' or even just need to go to the restroom.

    I've been to the ER so many times. Nothing ever happens. There's a large drug population here and it's hard to be heard over a physicians (well-deserved) fear of supplying a druggie of some kind. I went in to the ER during a seizure and was told to sit down and wait to be seen. Meanwhile I'm lolling my head and can't speak, just dribbling over myself lol. EIGHT HOURS LATER- I am seen and told to go home and try some tylenol. Le Sigh.

    I'm eager to be seen again. Like I said in another thread I have a good doctor right now. She's a GP but I think she's game to get to the bottom of this. It's slow going in this economy and with me gaining/losing healthcare three times over the past two years. Hopefully that's starting to turn around now. This year could be the year that we finally get stable after the economy tanked. We have a lot of hopes pinned on Hubbs schooling. So funny that he has a masters and is going back to school again.

    I just hope I can stay healthy enough for him to get done with the program and find a new job that he loves. Then we can deal with me- but I come second; I have to First job of mine is to help others, then God will take care of me. He's a cookin a'somethin!

  6. #6
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    If you suspect MS, you can contact the Multiple Sclerosis Association of American to see about getting assistance in paying for an MRI.
    I know it can be frustrating. I have had so many doctors just smile and refuse to listen to my symptoms, and I get highly frustrated.

  7. #7
    I wait it out for six weeks. If a new symptom doesn't get manageable by then, I go to my neuro and see if there's something we can do. Usually the answer is no, but it is so exciting when it is a yes! Finding out there was a medicine for neurological fatigue was like getting my life handed back to me.

    He also is my sounding board for if I should go to a specialist. I have mildly impaired breathing, but not so much so I need a pulmonologist. I am handling my bowels as well as they could teach me, so he didn't send me anywhere for that. He did send me to an neuro-opthamologist when I started losing my color and contrast vision, though, to make sure it wasn't something treatable that my normal opthamologist missed.

  8. #8
    Quote Originally Posted by Tokahfang View Post
    I wait it out for six weeks. If a new symptom doesn't get manageable by then, I go to my neuro and see if there's something we can do. Usually the answer is no, but it is so exciting when it is a yes! Finding out there was a medicine for neurological fatigue was like getting my life handed back to me.

    He also is my sounding board for if I should go to a specialist. I have mildly impaired breathing, but not so much so I need a pulmonologist. I am handling my bowels as well as they could teach me, so he didn't send me anywhere for that. He did send me to an neuro-opthamologist when I started losing my color and contrast vision, though, to make sure it wasn't something treatable that my normal opthamologist missed.
    Your doctor sounds amazing and I'm very happy you have him by your side!
    Is your neuro not considered a specialist with your ins? On our last plan anything beyond a GP (Even OB/GYN) was considered specialist and fell into different pay brackets.

    I remember when I learned how to use my bowels- it was liberating too. I couldn't figure out why it was getting so hard to use the bathroom. Turns out I have been doing it wrong for about 30 years. Now it's a very different experience. I just had to stop using some muscles and learn how to control others as well as dietary changes.

    I love it when simple answers are right there. Complex ones are mind-engaging yet there's nothing like having a problem that is no longer a problem, but rather a chance for change. I like those.

  9. #9
    Sorry, I should have said OTHER specialists. He's a specialist in neurology, but he isn't in charge of treating breathing problems, bowel, etc even though they are neurological in origin. He tells me when I need to go a doctor that specializes in that organ. He jokingly calls himself a 'witchdoctor' because he spends most of his time telling people which doctor to go to, or if they don't need to at this time.

    For instance, he agreed my speech and swallow problems were from my MND, but pushed me to go to a speech pathologist for evaluation. The speech pathologist was able to identify my level of dsyphagia, suggest diet and safety changes, and teach me how to avoid aspiration pneumonia. They documented my swallowing problems, with helps when explaining to my gastro why I can't possibly follow the gastroparesis diet she gave me.

    I have a theoretical GP, but he doesn't do much for me. I get where he's coming from: I either have a new form of a rare disease, or a 1/million disease. (HSP or PLS). It affects me from head to toe, and nearly all my problems are neurological in nature. So other than quarterly checkups of bloodwork, he shoves all other jobs off onto my neurologist.

    This is what an appointment with my GP is like:

    GP: Have you had a fever?
    Me: My spine's thermoregulation doesn't work, so I vary between 91 degrees and 99 degrees regularly, and tend to average at 96 degrees. I'm not sure how I'd know.
    GP: Is your throat sore?
    Me: My larynx is weak, talking and swallowing hurts, it's alwasy sore.
    ... etc

    It would be giggle worthy if it wasn't a sad waste of my time. Most of the time if I meet the "go to the ER if" criteria, I go to the local walk in to see if I really need to. They also wouldn't even think of treating anything other than a cough, but they're real good at telling me if I should be checked for appendicitis or something.

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