Request for opinions…

    • Anonymous
      November 13, 2006 at 9:01 am

      I just recently found this site. I’m truly looking for some opinions because I really don’t know what is going on with me… I would first start by thanking all of you for your time. Secondly, I realize that these are just opinions and no way substitute a Doctors opinion.

      My story started out during this summer. I fractured and ruptured a disk in my back while working around the house. L4, L5.. I was down for 6 weeks. Litterally down…. After that had healed, I was so cabin crazy that I started many jobs around the house. One of which got me the worst case of poison ivy I’d had since I was a kid. The Dr. gave me a heavy month of dexamethasone to cure it, which it did.

      But since coming off of that steroid, I have never been the same. My heart beats crazy and it beats so hard at times that it’s going to jump out of my chest. The Dr. didn’t seem to think that it was related to the steroids, but it was 2 days after my last dose that it started to occur.

      Then I was at work one day, and I got a numb feeling starting at my right foot, then slowly working it’s way up my right side, my shoulders, arms, neck, face, again very slowly moving from spot to spot. I became very disoriented, I couldn’t type and or speak, so I went to my local hospital. They kept me there for 3 days, they chalked it all up to stress and high blood pressure. Not one time did they actually show that I had high blood pressure, nor was I under a lot of stress at the time, no more than usual that is.

      I’ve kept a headache for almost 2 months now, until now, I’ve never had problems with headaches in my life. I’ve had MRI’s done, MRA’s, CT Scans, Xray’s, multiple Blood Works done, and none have showed anything abnormal. I swear the Dr. thinks all of this stuff is in my head, but I’ve never been one to go to Dr.s and I can’t take many medicines at all, I always get the side effects from them.

      They had me on an ACE blood pressure pill, but it made me sick, so I discontinued it. Here is a small list of my symptoms:

      1. Body jarring heartbeats, along with irregualr beats.
      2. Extreme dizziness when standing.
      3. Pressure in ears when standing, almost feels like my head is gonna pop.
      4. Unrelenting headache, constant 24/7, sometimes worse than others….
      5. Occasional traveling numbness starting at any point on my body..
      6. Disorientation, not remembering names of things or where I’m going, etc…
      7. Muscle soreness in neck, shoulders, head, arms, etc…
      8. Loss of coordination, like going to sit down and missing the chair and hitting the floor.
      9. Occasional vomiting, for no real reason…
      10. General weak and sluggish feeling, and generally feel bad, like flu like symptoms.

      I thank you again for taking the time to read this. I look forward to your responses.

    • Anonymous
      November 13, 2006 at 10:08 am

      hi ge & welcome,

      your symptoms are a little to the side of the fence that tell me it is not gbs. have a neuro do a emg/ncv to be sure. the biggest telling is that it traveled up your right side. gbs is symmetrical. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 13, 2006 at 10:28 am

      Dear Eagle,
      Some of your symptoms sound similar to migraine episodes. You should look up migraine symptoms, because there are different types of it. It may have been brought on by stress. Since you have done all the tests to rule out other things, try to rest and take it easy. You may also be experiencing panic attacks. You will know if its it’s a panic attack by timing the heart pounding. Panic attacks never last longer than 3 minutes, even though it feels like hours. Trust me, I know.
      Good Luck.

    • Anonymous
      November 13, 2006 at 11:08 am

      Eagle,

      This doesn’t sound like GBS, and I agree with Gene, get a EMG/NCV by a good neuro to see what that tells.

      On what part(s) of your body was the CT scan and MRI done?

      Not to scare you, but my cousin had a brain tumor and his symptoms were similar to yours.

      I would suggest a consult for a second opinion with another neurologist.

      Best wishes, and please let us know what happens.

      Suzanne

    • Anonymous
      November 13, 2006 at 1:50 pm

      [COLOR=”Purple”]Hi Eagle and welcome. Depending on how long you were on steroids and the dose, it can take up to a year for some bodies to adjust not being on the medication. Many of the symptoms you describe, especially headache, vomiting, disorientation, and fast/irregular heart beats are symptoms that can occur after coming off the drug. If your doctor doesn’t want to listen to you, I would certainly get a second opinion. Take care, Vicki[/COLOR]

    • Anonymous
      November 13, 2006 at 7:49 pm

      GE,

      Let me start off by saying that so many of us know how discouraging it is when doctors ‘minimize’ symptoms, or dont quite believe or understand what we are telling them. I think, those of us who are truly suffering and having to deal with these symptoms, need a doctor who will say “Hey, I can see you are worried, I BELIEVE you, I KNOW that you know your own body, and therefore I am going to do my best to help”.
      😀 (Ok, ok, so that is my fantasy ….. :o). Often the worst feeling is NOT knowing what is going on with our bodies, and it is often just such a relief to hear a medical professional tell us that they do believe and will try and help us ….. even if they dont know … I really dont care. Just lets get to the bottom of this.
      I think one thing that stands out for me is that you have the numb feeling moves from spot to spot. I really didnt have that experience. Mine was numb, pins and needles, but at the same time hypersensitive with incredible pain all over, initially in my neck and upper back.
      The reason I vomited, if that is what it was, was because my muscles were so weak they couldnt acutally swallow properly. I was also very aware of what was going on and not disoriented, and actually was laughing with friends over the phone because I sounded so silly slurring my words. I’m just going over what my symptoms were, and each case of GBS is different.
      I am also surprised, and its a great pity, that they performed so many tests on you and not try a spinal tap, especially since you were in the hospital for 3 days.

      All I can say is that you need to find a doc who is willing to listen and try and work with and for you. This is, for some, no easy feat, but look at it this way ………. This is your life! if you see them, you pay money! Let them earn that … so says me the biggest wimp on the earth :o. Please keep us updated on what is happening, even if it turns out not to be GBS.

    • Anonymous
      November 14, 2006 at 12:01 am

      Be careful of constantly spouting off symptoms. As was said before, doctors do tend to minimize if they have no reason to think otherwise. It does not seem to be GBS as per your symptoms but you need to rule out other causes including
      1) stress – not knowing what is wrong can cause havoc
      2)depression – depression doesn’t always take the form of lying in bed feeling sorry for yourself. There are a lot of people out there who get up every day and deal with their lives but seem to manifest these symptoms
      3)VITAMIN DEFICIENCY – there is a lot of sense to the idea that some of us are not getting the proper amount of vitamins/minerals and it does affect us negatively.

      I only offer this as an option as I have dealt with this with family members in the past and their symptoms appeared to be alleviated by vitamin supplements.

      Hope you find an answer.

    • Anonymous
      November 15, 2006 at 8:52 am

      Thank you all for your responses. I was out of work once again yesterday due to severe headaches and went to another Dr. to ask for something to ease the pain. This Dr. pretty much told me that I needed to go to a neuro ASAP. So i’m set up for mid Dec. for an appt. Whatever is wrong with me is hardly tolerable.

      Not knowing what the true problem is, wears on me worse than anything. anyone have a suggestion to get rid of this constant headache?

    • Anonymous
      November 16, 2006 at 5:03 pm

      Dear Grounded Eagle:

      I too had a spinal fracture at L4 about 15 years ago when a cliff face collapsed around me and I fell about 65 feet onto a pile of jagged rocks. I also had symptoms very similar to what you described. The problem was a leak of cerebral spinal fluid through an unhealed fracture or a microfissure in the repaired spinal bones. The loss of spinal fluid pressure can explain pretty much every symptom you described. I’m not a doctor and I could be wrong, but those symptoms sure sound familiar…..in a bad sort of way.

      Lee

      P.S.

      Acapulco cliff divers are a bunch of sissies. Any fool can survive a fall if you land in water. It takes a special type of fool to survive a fall onto jagged rocks.

    • Anonymous
      November 30, 2006 at 2:23 pm

      [QUOTE=Lee Spurgeon]Dear Grounded Eagle:

      I too had a spinal fracture at L4 about 15 years ago when a cliff face collapsed around me and I fell about 65 feet onto a pile of jagged rocks. I also had symptoms very similar to what you described. The problem was a leak of cerebral spinal fluid through an unhealed fracture or a microfissure in the repaired spinal bones. The loss of spinal fluid pressure can explain pretty much every symptom you described. I’m not a doctor and I could be wrong, but those symptoms sure sound familiar…..in a bad sort of way.

      Lee

      P.S.

      Acapulco cliff divers are a bunch of sissies. Any fool can survive a fall if you land in water. It takes a special type of fool to survive a fall onto jagged rocks.[/QUOTE]

      I had my Neuro Appt yesterday. He ruled out any MS or GBS with test results. He also said i t was unlikey that I had a loss of spinal fluid, most symptoms pointed to it, but he was almost certain that wasn’t the case. Thanks for the heads up on that, I made sure to bring it to his attention.

      I will give a complete update in another post when time permits.

    • Anonymous
      December 2, 2006 at 2:10 pm

      Lee – That sounds so painful! I cringed when I read your post!

      GE – Please do keep us updated. It’s interesting to me to hear about other rare illnesses, even when they don’t relate to GBS.

      Shannon