Dr's dont know?

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Jellyfish
New Member


Date Joined Mar 2011
Total Posts : 5
   Posted 3/25/2011 8:45 PM (GMT -6)   
Hi there, a month ago i was a healthy active mother of two and wife. Went to bed and when I woke my life as I had known it was taken away from me...
I had no balance, i couldnt walk, and numbness, and pain. (thought it was the Flu!) So My Husband took me to the ER because as the day went on I got worse. Oh and I took a Hot bath thinking that would help BAD BAD Idea! Couldnt even get out of the tub.
So anywho once the ER seen me I was admitted right away and spent the wekk on the neuro floor at the hosp. Had many tests done. MRI's Cat scans EMG's the works. ass the week went on I couldnt walk at all so the Dr had a walker and a wheel chair delivered to me. PT started in the Hospital and did the steriods... 4 bags a day! I once had the same steriods years ago when I had lost my sight in my lt eye they called it Optic neritis sp? (that lasted 8 weeks very scarry!) That was in 2005... MRI showed nothing so they sent me on my mary way, As the years went buy I would have siatica in both legs tremor in both hands all the time so I had to quit working in the OR. any way to sum it up I would have weird stuff pop up and go away...
Ok back to Now... Got out of the hosp. took my Wheelchair and walker home had no answers to why in the world this happened, Oh and I was sent home with all kinds of Pills! skull   Baclofen 10 mg 4 times a day (does NOTHING!), Oh the fun one was Prednsone Yeah! 5 weeks of that one! percocet for pain, what ever! just makes me dizzy.
Ok moving on ... There are so many things messed up right now My relexs, going to the bathroom. Or should I say Not going!
I live in north FL after 2 mo of the worst pain ever! Non stop Clean MRI's My dr calls today and say he cant figure it out! How do you go to bed fine then wake up like this I said oh I forgot! I have 100% muscle atrophy so the PT is no help my hands look like skeliton hands with skin drapped over them.
So I have a app at mayo clinic in May! Or I can go to UBA in Alabama. i dont know where to go what one is best. I dont know what to do for this pain in my Feet feel like walking on glass or a flame tortch buring me. Shooting pain all over like being zapped! Oh and I can sit and watch all my mucsles all over my body twitch and jump all over.
I am just at a loss I was told by Dr here I have Probable MS. I know about MS I have a good friend who has it and I have it in my family However... That gets me nothing and nowhere.
Ok this is really Long and I am sorry and if you have took the time to read this all, Your an angel! Thank you! Any advice or questions? I didnt put everything because then it would be a book.

wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/25/2011 11:26 PM (GMT -6)   
Oh baby, I'm sooo sorry...have they done a lumbar puncture?? That would have been one of the first things I would have done...have they also done an MRA? It's a special MRI of brain with dye looking for anuerysms,spinal fluid leaks, increased intercranial pressure...have they done any blood work for auto immune conditions,bleeding disorders, bleeding factors/clotting factors? You need the whole gammit baby-tell the neuro to admit you and do an lumbar puncture with all the other tests and treat it aggressively, the more aggressive the better your recovery. You could have an acute attack of MS, and may have mild symptoms all along and never known it...the also need to test for other neuromuscular disorders like: lou gehrigs...he/she as a neuro Dr. Should know those names and tests to do. I would also say if he says no, threathen an atty if permenant damage comes out of this and/or find another neuro NOW and /or another/better hospital that teaches/research and go to their ER! Please, be pushy/complain-you should have never been discharged with no clear diagnosis/plan of care!! I'm so sorry for your present health problems, I will keep you in my prayers! Please, keep me posted!! Amy jo

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 3/25/2011 11:40 PM (GMT -6)   
Your frustration is certainly understood. Unfortunately there are so many diseases and conditions out there that it can be very hard to track them down, and add to that the prevalence of world travel now what were once highly exotic diseases can be brought to our door step only adding to the difficulties of figuring things out.

I do not know anything about UBA in Alabama but I do know quite a lot about the Mayo Clinic having been to the one in Rochester, MN and also having a couple of family members who have been there as well as several friends.

Sadly while I did not get any answers for the main reason I went there, many other people I know have. One of them, a wife of a distant cousin, had suffered from various ailments for over 20 years, and it was to the point doctors around here were ready to diagnose her with Munchhausen Syndrome. Well before doing that her doctors decided to send her to the Mayo, and it took a couple of weeks of tests up there but they ended up finding out what was wrong with her and she is doing very well today. That was about 10 years ago and since then the only ailments she has had is things like a cold or the flu.

The Mayo, while no one can promise results, is worth going to none-the-less.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 3/26/2011 12:07 AM (GMT -6)   
MS can be difficult to diagnose since it needs to meet certain criteria. One of the foremost being episodes that are separated by time and space. If you have family members who have it, I'm sure that the doctors must suspect it. The MRI's may or may not show lesions and a lumbar puncture may or may not show some of the markers for MS, but they are also markers for other pathologies as well.
Do you have a history of back problems? I assume they did a full MRI series on all areas of your spine? If not, I would suggest they start there.
As far as Mayo Clinic goes, I have heard both good and bad things about it. If you live close to UofA, then I would start there and find what neurologists who specialize in neuromuscular disorders or MS clinics and make the earliest appointment that you can make.
The muscle atrophy can be recovered but you must work to restore the muscles. While PT isn't helping you get on your feet, at the moment, I'm confident that they are keeping the joints and muscles from further atrophy and locking up. Stick with it, even if what they are doing isn't feeling good or showing you results at that moment. It will be helpful to you later.

Good luck
Sandi

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/26/2011 10:57 AM (GMT -6)   

 

 Dear Jelly,

     Good morning  :-)   Welcome to the Healing Well Community. My name is Dani and it is very nice to meet you. As you can see, we have a great support group here.

     I am very sorry for all you have had to endure through. I can tell you are fed up with it all. Who could blame you? You are doing everything you can. I do hope that either hospital is able to give you a diagnosis. You deserve to know what is going on with your body. To get proper treatment.

     As Jim said... and I know this is the last thing you want to hear... Many illnesses and diseases are unknown. I hope that is not the case for you. You deserve a chance to have your life back! I am one of the "unknown". I am one of the "Idiopathic". We know what damage is being done to my body, in fact track the damage. Just no cause to be found. I really hope this is not the case for you! Like I said you deserve a chance to fight what is happening to your body! It is just that sometimes, for what ever reason, there is not a clear "answer".

     Again, it was very nice to meet you. We hope to hear from you again. Please let us know how your diagnostic weeks go at the Mayo Clinic. Hang in there and stay strong!

*hugg*
  dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 3/26/2011 11:20 AM (GMT -6)   
Have you seen a vestibular specialist? It would be great to know what is causing the symptoms initially, but treating vestibular issues can improve a lot of the other symptoms.
An ENT can run basic tests like caloric & hearing & such, but a vestibular specialist will run much more extensive tests to figure out what factors set off the dizziness/imbalance. Oftentimes dizziness can be acute & sudden onset. The VT tests try to recreate the cause of your dizziness.

I went through a LOT of tests before I finally saw a neurologist from Mayo who sent me to a VT for testing. I went through VT for several months. I couldn't believe the difference! My hearing improved, the slight slur in my speech disappeared, my headaches went away (they were caused by eye strain from me compensating for the dizziness), balance improved a lot, nausea resolved, etc., etc. Even my IQ went up, the neuropsychologist hypothesized that since balance is so important, my brain reassigned knowledge parts of my brain to help out with the balance. Once my balance improved, they got to go back to their original function.

I truly hope you find some answers as to what the cause is, but vestibular therapy usually can make a huge difference in quality of life while you're waiting. If you do have MS, VT can be a great option. In fact, they started me on it, b/c they thought I might have MS. The tests eventually came back negative for that, but the VT was also helpful for the condition I did have (Chiari).
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