Need a Diagnosis

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Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 5/6/2010 11:51 AM (GMT -6)   
  Have been experiencing symtoms for going on three yrs..and haven't been able to work since Sept 28/09.Now am having muscle spasms that make my body jerk.... can't sit stil, hand tremors, and trouble walking. Symptoms started in feet.. numbness, tingling and pain. Then stabbing pains and they started to move up my left leg. Had numbness from waist down in first episode ...sept28.. (both legs)with lots of pain and weakness. was sick for 8 wks, then it subsided a bit. Second episode..jan16/10 invovled arms,shoulders,neck, upperback and face. Muscles tightening, tics,electrical pains in cheeks,gums,and tounge... pressure in the middle of forehead.Stabbing pains also in head and face. Bands of tightness around upper arms,breathing difficulties, swallowing difficulties, tightness around ribcage and stomache. numbness in all areas, tingling and a few brief periods(never more than 1/2hr) of blurry vision,wavey lines, flashing in peripheral with extreme headache following. Think I have had every symptom possible. Have had mri's ct scans and spinal tap..all coming back fine...except for inconsequentsial lesion ...?...on mri of spine. Tremors,jerking(muscle spasms) and difficulty walking started the end of march.. very weak all the time and very scared. How can nothing show up... am waiting now to be reffered to a new neurologist.. think the old one was a quack... (he did mention once that my reflexes were brisk). Have some good days tho and sometimes feel like I'm not sick but it doesn't last for long...
  Does anyone have any ideas for me... Maybe some other testing that I should have done,or maybe not MS.... anything would b appreciated.. 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 5/6/2010 6:12 PM (GMT -6)   
Make sure you see an MS specialist.  Your symptoms are certainly disturbing.  You can call your local chapter of the MS society for a list of MS specialist in your area. 
 
Ask for evoked potentials.  That is a test of the central nervous system.  It will tell if your CNS is working normally.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/6/2010 6:20 PM (GMT -6)   
Hey Abbey,

Sorry to hear that you are experiencing so many symptoms. If your spinal and MRI's show no indications of MS, I would recommend also getting tested for Lyme Disease. I share many of the symptoms that you describe and have been dealing with Lyme Disease. Your symptoms do seem consistant with MS. Have you considered getting a second opinion from a neuro that specializes in MS?

Hope you get some answers real soon.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 5/11/2010 12:22 PM (GMT -6)   
Thank you for your replies... truly appreciate any thoughts and suggestions.. am at my wits end..
Am waiting for my primary doctor to now refer me to Toronto... I live in Windsor, Ontario... The doctor I asked for is my cousins neurologist.. He's a teaching doctor at toronto western hospital and they have teams of doctors who try to figure out what is wrong... I'm sure I'll see a MS specialist there.. I have considered Lyme's disease, but just assumed they would run a bunch of different tests from the spinal tap fluid, and I don't think they did.. but he was looking for ms.... when I went to him for the results he said to me that he sees no signs of muscle or neurolgical disease... this is exactly why I considered him a quack... I actually laughed at him... he could see that I was having trouble walking & the tremors in my hands...and I've had sooo many nerve symptoms it's not even funny... but he never wanted to hear what type of symptoms I was having.. Saw him for 7 months and he only asked me at the first visit what symptoms I was having...and wouldn't even then let me fully discribe everything !!! He said the way I was walking didn't look like MS and he had no idea what was wrong with me, but would apprecieate it if I would let him know ...what it is when I get a diagnosis... lol...
I never had the bullseye of lyme disease and I don't ever remember having a fever... but it could be possible that I did at some point. Something else that I ran into on the internet was CIDP.. which really sounds like me also, but it says no cranial nerves are invovled.. and I'v obviously had those problems.
there was a couple of things that really caught my attention tho ... it starts in the feet and gradually ascends up and you have abdominal fullness and bloating .. which I had.. and a feeling like the bowels were straining... but thought that was muscle spasms..(is this something that happens with MS??) haven't seen alot of talk about this anywhere except CIDP and it really caught my attention... this happened to me during the first attack on sept 28th...and had it off and on for 3 months... my stomache would get so bloated sometimes that my skin hurt, but CIDP is found in the blood work and the spinal, but not on mine?? I do know that diagnosis can be a very long process tho for Ms or anything else... but why??? is it because it takes awhile for the scar tissue to build up to show lesions ???
I know when I go to Toronto they will test me for everything... and hopefully I'll get some answers
Am starting to have exteme tiredness with episodes of feeling like a zombie...and some confusion starting.. just wondering about other things that this could be and am really concerned about why tests show nothing ...
Thank you sooo much for the feedback
sometimes need to vent txs

Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 5/13/2010 3:35 PM (GMT -6)   
Good luck with everything, sounds very scary and frustrating. We are thinking and praying for you!
-Tertle(Andy)


Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 5/14/2010 11:00 AM (GMT -6)   
   Thank You Tertle... Greatly appreciated...

nypromoter
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/16/2010 6:43 PM (GMT -6)   
fibromyalgia has everything you are talking about. My wife has a lot of problems with FM and has developed lesions but not the lesions locations that occur with ms. And if doctor tells you that fibromyalgia is not real, run get out there and find a real doctor. My wife is on full disability.

Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 5/18/2010 10:16 AM (GMT -6)   
   Really.... I'm surprised. I have looked at fibro too and never seen any mention of nerve pain symptoms.. The reasons why I'm not considering Fibromyalga is because I'm not tender to the touch, when say.. my legs hurt, because I 'm not having joint (arthritis pain), and because of the nerve symptoms I have ... shooting, stabbing, tingling ect. I also have nerve pain in my head and face ... one of the main symptoms when i went to emerg was tingling on top of my head, my cheek, lips and under my chin. I also had a creepy crawly sensation at the top of my forhead, besides everything else through out my body. I just assumed this is why they all decided to start looking for MS. I don't have anything else that goes along with Fibro either, like IBS, no rashes ect.  Does you wife also have the blurry vision problems?? I sometimes get tingling in the corners of my eyes (on the inside ) too.. None of the doctors I have seen have ever mentioned fibro to me.
   I'm also having a new symptom with an old pain that scares the crap out of me... as soon as I lay on my back (only in my bed ) I start getting this really deep burning pain in my left leg, from hip to knee, then it goes really numb and usually wakes me up, but now if I move my leg I get this excrusiating pain in the muscle.. like it's ripping.... omg, horrible pain.
    I'm very happy for the insight about fibro, because i'm sure I don't know everything about it.. I know it can be very dibilitating and I hope your wife has found some relief... chronic pain is never any fun, no matter what disease you have. I'm also greatful because these are the types of responses i'm looking for, anything to shed some light.. and of course because, I'm undiagnosed I sometimes need to vent... lol
     Thank You for your reply 
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