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    Old 07-05-2014, 08:49 AM   #1
    WithGrace
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    Smile Unfortunate or a blessing in disguise

    Hello to all
    I have had some unfortunate events for the last 3 days and now thru talking with my best friend I've found a hospital in my city that may be able to get me tested sooner. So here's the most recent events:
    Over the past week I've been having a lot of pain in my left jaw shooting down thru my chin and my left arm is mostly numb and feels like dead weight when I lift it to catch my balance. So, Thursday night the kids and I were downstairs watching DVDs and I got up to hit play but I collapsed in front of the tv. My arms and legs were numb and when I reached out that left arm to grab the edge of the tv stand I realized it too late. Thankfully I didn't hurt myself (yet) & after a few min I crawled to the sofa. I started to wonder should I go to the hospital but doubted it because the ER doesn't always know how to define what's happening. I've been a few times over the past year and been diagnosed with flu from muscle spasms, stomach virus from the dizziness and it's not a stroke from numbness. So I was he hesitant. The next day my legs ached and felt like lead. I could barely walk. It was the 4th of July & my son's birthday so, I felt really bad that I couldn't be apart of it. His dad (my ex husband) was able to plan a great day for him & took the kids until that evening. By that evening I figured out how to push thru the symptoms with my legs and I thought I'd be ok. I was helping light fireworks but somehow I lost balance and fell while lighting one. Now, today my ankle is swollen and feels broken. I decided I will go to the hospital of course because now I can't walk on it. I got a call from my best friend and I remembered that she was diagnosed with Guillain–Barré syndrome at a hospital here. She explained they did a spinal tap & MRI and refused to let her go until they found out what was wrong. They saved her life. So today that is where I am going. Besides telling them my ankle is broke any suggestions on what to say?

     
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    Old 07-05-2014, 11:47 AM   #2
    MSJayhawk
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    Re: Unfortunate or a blessing in disguise

    WithGrace,

    If you have a journal or summary of your symptoms, share those. When my right arm fell useless I went to the ER of the university hospital at the University of Kansas. My future MS Specialist was on call the time I went. It was a blessing for me because he immediately thought MS and arranged an appointment for me the following Monday (it was a Saturday). I did not know what to say except what was happening. Later we did a forensic review to determine the objective evidence for onset.

    Falling can really hurt you physically as well as demoralize you too. Falling is something I hate and I try to always have a cane, walker, etc. with me depending on how I am doing that day. I hope this hospital helps you. Please note that the spinal tap is not a specific test for MS and the MRI is not either. They are simply tools your doctor uses. If the attending neurologist or neuro on call is not an MS Specialist, I would not bother seeing them (my personal, non-medical opinion).

    I will add your needs to my prayers. With the heat of summer, please take care to stay cool. A slight rise in core temperatures can slooooow down or stop your electrical messages from getting to and from your brain.
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    Old 07-05-2014, 03:18 PM   #3
    WithGrace
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    Re: Unfortunate or a blessing in disguise

    I'm here waiting to be seen. I told the triage nurse about the numbness in my arms & legs. Looks like this will be a long wait but the patient chairs are made to be very comfortable. So, hopefully this part is over soon.

     
    Old 07-05-2014, 05:47 PM   #4
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    Re: Unfortunate or a blessing in disguise

    WithGrace,

    I am glad you have gotten that far! The chairs at the MS Clinic I go to are quite comfortable too! LOL. However, they are too low for me. I sit in an area with higher seats and a table which are comfortable too.
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    Old 07-07-2014, 10:54 PM   #5
    WithGrace
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    Thumbs down Re: Unfortunate or a blessing in disguise

    I wanted to add an update to this post especially to help those who are frustrated with their neurologist. I apologize in advance for the long post.
    I was admitted into the hospital here on 7/5 after a CT scan in the ER, the complaints of numbness and the evidence of breaking my ankle by a fall. The ER Dr said he was more concerned about my other symptoms and felt the ankle break was almost minor. As I mentioned in my earlier post on this thread, I came to this hospital after the advice of my closest friend. Well, it's day 3 here and they have done several tests, a lumbar puncture, 2 brain MRIs and finally a brain and lumbar MRI with and without contrast I have seen 3 different neurologist. They are all working together and I've even had students observing the Doctors. The thing I want to point out is that the first neurologist, a woman, suspected there was a thyroid issue and ordered the repeat brain MRI this time with contrast. Her reasoning was so she could better see the "spot" she was concerned about most. Well, in the mean time I was already told by an attending neurologist, a recent graduate I assume, that the first brain MRI was excellent and nothing was found on the MRI but rather high protein was in the lumbar puncture. The next day, I saw a new male neurologist and he said among other things that the spot was likely the cause of my migraines and not a shock to see as people with frequent migraines have many spots. He said he "was not impressed with the spot and still searching for an answer" to my symptoms. The spinal tap was performed on day 1 by the attending neurologist. Neurologist #2 said he was running more tests on the sample and wanted to be sure the results are clear. As usual they are trying to rule out all the other more rare possibilities. However, he clarified that the excellent MRI report had come from the radiologist and it wasn't until the neurologist themselves reviewed it that they found the spots. That made me wonder why was I even told it was excellent and nothing had been reviewed? Moving along, neurologist #3 is an older Dr. who took her time getting to know my history, repeating back to me my family history of unique and rare neuro disorders and also conducting finger tests and reflex and sensory responses. She finished and asked me did any tell me about the details of what they are seeing so far? I answered, no and she proceeded to explain that she believes I have MS and I'm suffering from my first attack but that she is waiting to see more results from the puncture and she ordered the full MRI with and without contrast.
    It's been quite a task to get thru these past 3 days. I think I see now why patients get delayed diagnosis and wonder for years what is really happening. It's taken several MRIs just to get here and I don't have an answer yet but the Dr ordered the steroid treatment to begin while I continue to wait in limbo. I've been lying flat and they've even given me caffeine pills but my head still hurts badly when I sit up. Yet, somehow thru it all I still find amazing grace and feel protected. It's a blessing to be in a facility with so many caring hands. I hope every one searching for answers can find this same peace and assurance. In time....
    <3 WithGrace

     
    Old 07-08-2014, 07:49 AM   #6
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    Re: Unfortunate or a blessing in disguise

    WithGrace,

    In 1982 during university fall break my Neuro arranged for me to come in for 3 days of testing to get through everything. I saw probably 15 guys and gals in white coats every day for 3-4 times a day. The university teaching hospital is good. That said, not every neuro who sees you in the setting is on track to be an MS Specialist and you obviously met some. With any luck, your time and place in their experience will provide a blessing to others down the road.

    It is true that migraines can cause lesions, but they are generally quite small. The difference between a clear and an abnormal MRI is clearly one dependent upon experience. Some younger doctors with little or no experience may lean on the Radiologist, but if the Radiologist lacks MS experience, the detour back into limbo land can become a long term wandering.

    I am glad you had some doctors who shined brightly. When my mom was diagnosed with Parkinson's, it was when she fractured her hip in a fall. She had turned around too quickly and lost her balance. She was seen by the orthopedic surgeon and a neuro who was a PD specialist. The PD neuro told her she had had PD for many years. Had it not been for the fracture, we would never have known. Sometimes being in the right place at the right time can be a blessing onto its own.

    I certainly hope your ankle break heals quickly and completely. The trauma of the break may cause further MS symptoms to present.

    It sounds like you are dealing with an LP headache. Keep lying flat and taking fluids. The caffeine is useful too. Stay strong and thanks for sharing!
    __________________
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    Old 07-08-2014, 12:31 PM   #7
    WithGrace
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    Re: Unfortunate or a blessing in disguise

    JayHawk,
    Thanks for the tips on the LP headache. I just met with the 3rd neuro and the 2nd neuro as well as several students who were present. She explained they are very interested in my case because of the family history. Like you said, this will be a blessing to others down the road.

     
    Old 07-08-2014, 03:43 PM   #8
    MSJayhawk
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    Re: Unfortunate or a blessing in disguise

    WithGrace,

    I imagine that you will have many interested doctors!
    __________________
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