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Thread: What are these symptoms?

  1. #1

    What are these symptoms?

    Hi,

    The other month I woke up with intense tingling sensations, like cold fire or hot water swirling up and down my arms and legs. My neck had been cocked back, half off the pillow. I almost fell out of bed with extreme shortness of breath, staggering, could not see straight. The tingling has continued since then, and my arms and legs are less sensitive to touch than they were.

    A few days later I noticed a few muscles in my arms and legs were not working. A few days later I noticed my arms and legs had gotten skinnier. When flexing, some muscles stand out much more but the non-working muscles don't do anything. I have trouble walking, and everything feels heavier, even my arms by themselves. I've lost maybe 8 pounds in one month, and that's very unusual.

    For two weeks I was constantly exhausted and could not sweat. Got chills during 85-degree weather. During that time, a "band" of numbness traveled up my body from knees to top of head. For 4 days I could not feel my groin area, front or back. Writing was impossible for a time.

    Now, when I bend my neck down or back, I get instant fatigue, forgetting to breathe, tingling in my belly, with a feeling of relaxing going on inside, and a slight feeling of fever. Sometimes a burp comes up. Always, there's a burning inside my neck, sort of _behind_ my throat. There is a twitching feeling in my calves and forearms. Sense of taste is less, reading the computer is harder, there's a ringing in the ears.

    The symptoms are worse in the morning and get slowly a little better as the day goes on, but as weeks go by I end up with overall more shrinkage in arm and leg muscles, and therefore less strength. I understand nerve damage is basically permanent after an unknown time, until it fixes itself and turns out to have been temporary, except when it stays permanent.

    I'm terrified that this is a spinal cord issue of some kind, and doctors don't know what it is so it stays undiagnosed and untreated, and it's not getting better by itself, and they don't think it's urgent, even though physical therapists won't touch me because they "don't want to put me at risk". When they examine me they see effects that are "not normal and not good."

    Can you advise as to what this might be, and what doctor near New Jersey might recognize this issue and provide some assistance or relief or _something_?

    Thanks in advance,
    Jim

  2. #2
    Jim, that certainly sounds scary and there's too much going on for me to make any suggestions - except one, and that is to get to a hospital where the doctors are savvy about neurological issues. New Jersey has (or is close to) several such centers, if you're able to travel - Rutgers, Duke, Johns Hopkins are all within reach (potentially anway). Best wishes with this, and welcome to the forum.

  3. #3
    Thanks Bonnette. What exactly do you mean by "Rutgers"? In New Brunswick, I know of:
    - Robert Wood Johnson University Hospital
    - Saint Peter's University Hospital
    - Middlesex General University Hospital

  4. #4
    I was referring to the university, proper, in New Brunswick. Medical centers associated with Rutgers doubtless have their own names. You will stand a much better chance of getting an accurate diagnosis if you are seen by people who deal with neurological issues day in and day out. Even if they can't come up with a definitive diagnosis, you'll still be in a much better position to manage your symptoms, for having had many ailments (some of them obscure) ruled out.

  5. #5

    Follow up

    I received the following private message, paraphrased:

    Hi. I just spent 10 yrs of my life trying to find out what was wrong and I finally got tested by a geneticist. There are only a few in the country that specialize in Ehlers Danlos Syndrome, a rare genetic disorder. Please look it up at EDNF.org. I have that, along with dysautonomia and degenerative disc disease. There are other related conditions. Not everyone has all of them so read about each one. A lot of people with EDS also have POTS (postural orthostatic tachycardia syndrome, which can cause dizziness). They checked me for cranial instability. When I saw that with the dysautomia in your post, I had to contact you. So many Dr's don't even know about this condition and it goes undiagnosed all of the time. Good luck, I hope this information helps you in some way.
    It turns out this is exactly what I have. The specialist recognized it pretty quickly. Since then, I've learned a lot more than most doctors know.
    0. It's a disorder of the connective tissue (Collagen). Most everything in the body either has collagen or is collagen.
    1. It's not rare, it's just rarely correctly diagnosed.
    2. Most doctors don't know what it is - neurologists, rehab people, neurosurgeons, rheumatologists, psych people ...
    3. Pretty much every person with the condition has a unique sub-set of possible symptoms.

    In my case, the ligaments in all my joints fail to hold the bones together properly. So, my vertebrae wiggle around too much, compressing my spinal cord, which causes the neurological symptoms. I've lost 20% of my weight, mostly due to muscle atrophy.

    Like the person above, I was found to have cranial instability and was successfully treated for that.

    Also common in EDS is Tethered Cord Syndrome, where the spinal cord is pulled and stretched downward, causing neurological dysfunction, frequently including symptoms of brainstem herniation. I was successfully treated for the TCS.

    EDS is disabling in widely varying degrees, from unnoticed to assisted mobility to feeding tube, and it kinda sucks.

  6. #6
    Jim, I am thrilled that you got a diagnosis quickly, have been successfully treated for some of what's going on, and have learned so much about your condition(s)! Thank heaven for the member who pm'd you! Thank you for posting this update - and all best wishes, going forward.

  7. #7
    I am beyond thrilled that I was able to help. I took a chance reaching out on such an old post. But something told me I needed to reach out and possibly help someone else that may be suffering the same as me for so long.
    Please email about your drs. I saw you mentioned nj and I also live here. I am trying to find dr in the state to treat me. It's been hard finding them.
    I am returning to my geneticist in Baltimore in 2 weeks to have my son evaluated.
    Best wishes ~ kristine

  8. #8
    Quote Originally Posted by Bonnette View Post
    I am thrilled that you got a diagnosis quickly, have been successfully treated for some of what's going on, and have learned so much about your condition!
    Thanks Bon. I still do not have a true diagnosis. The wait times to see the specialists are 6 - 12 months. At the time of recognition, I thought 6 months was way too long, but now it's clear that people go many, many years without finding a doctor who has a clue.

  9. #9
    Jim, I went ten years between onset of symptoms and diagnosis - a very frustrating, frightening time. 6-to-12 months is too long to wait to see a specialist, but yes, that's what we're dealing with in this system. So...my hope is that your symptoms will either stabilize or get better (preferably the latter!), between now and your next diagnostic steps. Keep us posted!

  10. #10
    Super Moderator Sue Pendleton's Avatar
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    Robert Woods Johnson would be the hospital in New Brunswick.

    Jim, glad you have a disagnosis. I was thinking ALS because it seemed yours was hitting everywhere and so does EDS it seems. Hopkins does a lot of genetics testing but I'm sure there are many just as good in NYC. And yes, for non-emergencies the normal wait for an ultra-specialist is 6-12 months. If you go to Hopkins ask to speak to the specific doctor's office. You'll find out what tests to forward, they'll let you know up front any costs so you can compare to your insurance or arrange a payment schedule.

    Thanks Kristine for covering this one. I know more than most specialists when it comes to spinal infarcts but rely on other members for the finer points of TM and MS. EDS? Totally out of my league. Thanks again!
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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