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Thread: Burning pain in head - can't even cry

  1. #11
    Distinguished Community Member Sunshine's Avatar
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    Yes, insist on an appointment this week. Tell secretary you are rapidly worsening. Good luck. Clear those what if thought out, theyre likely not true, but will exacerbate everything inside of you.

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  3. #12
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    In most places the Doctor has the results of an MRI very quickly, and if the person reading it sees something really troubling, they often get in touch with the Doctor the next day. I don't know if this is true where you live.

    Just wanted to say that as far as ALS goes that was a concern in my case. However, my Neuro told me that I almost had too much going on for it to be ALS. When it turned out to be MS it fit the pattern of a person with MS who has a lot going on in their body. I have seen people in wheelchairs who did not have all the symptoms that I have. I had a very thorough Neurologist and he did a cervical spine MRI and there it was, plain as day. Back then I could not have been diagnosed with a brain MRI. There were some very small spots in the brain, but they would have been unable to say definitely MS.

    When the cervical spine MRI was done, like you it was on a week-end. The radiologist called my Doctor on Monday and the Doctor called me.

    I am somewhat like what Agate was describing. I freak out when new symptoms popup. Try not to do that if you can help it. For me it is easier said than done. I will be glad when you get the results of the MRI. In the meantime, keep in mind what my Neurologist told me about ALS. He said he had considered it and ruled it out due to me having so much going on in my body.
    Last edited by Virginia; 06-10-2019 at 02:00 PM.
    Virginia

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  5. #13
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    I'm surprised that no one has suggested migraine Headaches?

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  7. #14
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Catdancer View Post
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    I'm surprised that no one has suggested migraine Headaches?
    That’s why we need you so much....Catdancer!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  9. #15
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    Quote Originally Posted by Catdancer View Post
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    I'm surprised that no one has suggested migraine Headaches?
    Good point. Complex Migraine headaches maybe...
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #16

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    Thanks so much for all your support, everyone.

    Well, my MRI was negative. I guess that it's unlikely to be MS given that my last negative MRI was in 2006. I was thinking it was earlier as I thought I had not had symptoms since 2004 or so, but guess it was 2006. It seems very unlikely that it could be MS 13 years after the last negative MRI, and I definitely first started having strange symptoms since I was 1998, mild initially. Actually everything between 1998 and 2006 was mild compared to now, and again, I had no symptoms between 2006 and now.

    I'm extremely scared this time, though, because of this leg weakness and shortness of breath, which I never had years ago. And, I also have twitching here and there all over my body. The breathing thing comes on out of nowhere, is bad for a few minutes and then seems to lessen for a while. I've also had a feeling of my mouth and tongue being numb/large, which also comes on and usually goes away after a while (that symptom is happening right now).

    I went to the ER yesterday because of this breathing problem....I kept trying to breathe as it felt like I wasn't getting enough air, and I ended up hyperventilating - I thought I was dying, having never hyperventilated before. Ended up calling 911. My BP went up to 200/100, and my heart rate went to 129. They gave me Atavan, and I came out of it. I insisted that they let me see a neurologist. They sent one down who basically told me I was an anxiety case. Anxiety made it worse, but something else is the root cause, and I'm really terrified. It's not normal to feel so weak that you cannot keep standing up and to have this come out of nowhere at the end of April and just worsen and worsen.

    I know that because I had a milder flavor of this before, it would be hard to say that this part b version could be ALS as I know it's unusual for ALS to remit at all, and those neuro issues I had 14+ years ago were largely sensory. This actually started sensory (tingling,burning,numbness), too, and I still have some sensory symptoms, but right now, not really. It's weakness, twitching, and the breathing constraint that's not really at the chest level but more at the sinus level - yet sinuses are totally clear.

    At this point, chasing a diagnosis is futile. I want help with the breathing - it's the worst of it. I actually cannot sleep at night - not at all because when I finally doze off, I awaken with a start to this breathing discomfort. They gave me Xanax at the ER, and I used it last night to sleep - first time I slept more than 2 hours a night in days. Yet, I'm also afraid of it since I'm worried it is restricting my breathing at night, and I'll be too out of it to realize and wake up. I'd like to know what's going on when I sleep - if I hesitate breathing or what. I know anxiety over the breathing issue makes the breathing issue worse, but I can't help it....

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  13. #17
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    Hootswithowls, sorry everything is so hard for you right now. Did they do both MRI of the brain and Spinal Cord? Also, you could get to the bottom of the breathing problem, I think, with a sleep study. My brother did one and he said there is nothing to them. They were able to tell him a lot of information regarding what was going on with him at night. They would know exactly what you are doing when the problem starts and what happens during the problem. He saw a Neurologist to have his sleep study done. I hope you will talk to your Neuro about getting this done.

    Please continue to keep us informed, and continue to let us know how you are feeling.
    Virginia

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  15. #18
    Distinguished Community Member Sunshine's Avatar
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    Start where you are.
    Right now, start with the breathing. Get the anxiety piece under control. Here is a meditation I want you to try by Tara Brach. It is a 4 min meditation. Get something you can sit on comfortably in a quiet room away from hub bub. Dont worry about doing it right or wrong, Just follow her lead. If you like it, I will send you an 11 min one. These meditations calm me down and bring be back to the here and now, out of the depressing past of loss, and the scary future of what if...

    Her voice is amazingly soothing. If you like it, go to her webiste at TaraBrach.com. It is free, ou dont have to make a donation. Some are for sale. Many are free. She is an amazing instructor. It will help you regardless of the nature of the physical causes of your problems.

    practice this meditation 3 times a day. More if you want. When you find your mind wandering (as all minds do), notice it by saying to self, “I am thinking” and then float away from the thoughts and back to the meditation.

    https://hwcdn.libsyn.com/p/5/7/7/577...162ec58e49d3ca

    You will calm down the part of your brain that is emotionally aroused 24/7 which can only worsen your symptoms. Trust me on that.

    In the meantime, keep a log of your symptoms,,,get a second opinion if you do not think your docs are up to the case. Stay here , we will help you navigate and ground you. We have all been through something like this...I know I have and am.

    PS re your worry about breathing, go see a pulmonologist . One with a heart, not just a brain.

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  17. #19
    Distinguished Community Member agate's Avatar
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    HWO, I hope that you've gone over any medicines you're taking (including OTC meds) and investigated whether any of them cause breathing problems. Many drugs do have effects on breathing.

    You might want to check your environment. If you're in the same situation most of the time, that shouldn't be too hard. Could there be something in the air you're breathing that is harmful? Even something like a humidifier that isn't cleaned regularly can cause problems. A neighbor of mine had to have special HEPA filters in her apartment for quite a while because mold was discovered there.

    By now you're probably calling me a dimwit and wanting to scream that you tried all of these measures long ago.

    But I thought it wouldn't hurt to bring them into the discussion...
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  19. #20
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    I think everyone would be surprised to know what the new sleep studies are showing about breathing and what happens in the body during the night. I was kind of amazed when my brother got his results. Somehow, I had gotten the impression that HWO's breathing problems are a lot at night. My brother just walked in, took the clothes he normally sleeps in, a tooth brush and any medicine he normally takes, went to bed at usual time, got up at usual time and walked out. Got the results at next Neuro appt. He said the room was really nice and set up just like a nice bedroom, with separate bathroom. Furniture was nice. I think it was a Pulmonologist who sent him for this, but was done in a room the Neurologist office has set up for this.
    Virginia

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