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  • 7 month puzzle- Can anyone solve?

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    Old 03-18-2007, 03:09 PM   #1
    zandvoort
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    Question 7 month puzzle- Can anyone solve?

    Within 4 weeks in Sept and Oct 2006, almost my entire body became numb (still is). I am fully functional, just feel an odd tingling. Started in the extremeties and is everywhere except the front of my trunk (including my tongue!). Once something got numb, it stayed numb. I am often weak (climbing stairs, swimming, standing in place, after taking a bath) but not fatigued, intermittent urinary incontinence lasting several days at a time, flashing in peripheral of left eye, feel off balance and lately dizzy when I move my head quickly. Ever since my face went numb, I have had pressure in my ears like on a plane but no hearing loss. Had one episode of banding around my waist from diaphragm to naval. Night time and early morning is the worst, often have burning in arms during the night. I pass all the neurological office exams, I have had 2 MRI series, and an emg, all negative. Blood tests for all the obvious, Vitamin Deficiencies, thyroid, liver, lyme, immune issues, etc are negative. I am otherwise very healthy, 42, active. Started night sweats in last month or two so hormones may be on the move. I have been to a rheumatologist and 2 neurologists, one an MS specialist. I am being told to learn to accept and live with what is happening until something measurable shows up somewhere or it goes away. I am doing ok with the acceptance but if anyone has ideas, I'd be glad to hear them. I went to a naturopath who thinks I may have an issue with my natural cortisone systems but I do not understand what that means.

     
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    Old 03-19-2007, 10:11 AM   #2
    Lebnin
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    Re: 7 month puzzle- Can anyone solve?

    Hi Newbie, You can have a lyme test thet ends up negative. I had two negative test before I went to a Lyme specialist. He tested with different labs and did other tests. He diagnosed me with chronic LYME. Anyway, others on this site can explain better than I . My suggestion is make appointment with a specialist. The one I see is in Hampton NH. probably about a 2.5 hour drive from you. He has a web site. I just read I'm not supposed to list so I pulled it. You must search with internet explorer or it won't come up. If you need the number let me know.

    Last edited by Lebnin; 03-19-2007 at 11:02 AM.

     
    Old 03-19-2007, 10:18 AM   #3
    michael178
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    Re: 7 month puzzle- Can anyone solve?

    Unfortunately, by the time you are done, you'll hear a lot of things you do not understand, eventually you might start hearing about genetics and will have to be a real lab geek to even start understanding. Good luck. Medicine is a baby science. And it is harder the closer to the head they get (not many of us will allow them to poke around our brains to see what is going on)

    Last edited by michael178; 03-19-2007 at 10:19 AM.

     
    Old 03-19-2007, 11:42 PM   #4
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    Re: 7 month puzzle- Can anyone solve?

    Quote:
    Originally Posted by zandvoort View Post
    Within 4 weeks in Sept and Oct 2006, almost my entire body became numb (still is). I am fully functional, just feel an odd tingling. Started in the extremeties and is everywhere except the front of my trunk (including my tongue!). Once something got numb, it stayed numb. I am often weak (climbing stairs, swimming, standing in place, after taking a bath) but not fatigued, intermittent urinary incontinence lasting several days at a time, flashing in peripheral of left eye, feel off balance and lately dizzy when I move my head quickly. Ever since my face went numb, I have had pressure in my ears like on a plane but no hearing loss. Had one episode of banding around my waist from diaphragm to naval. Night time and early morning is the worst, often have burning in arms during the night. I pass all the neurological office exams, I have had 2 MRI series, and an emg, all negative. Blood tests for all the obvious, Vitamin Deficiencies, thyroid, liver, lyme, immune issues, etc are negative. I am otherwise very healthy, 42, active. Started night sweats in last month or two so hormones may be on the move. I have been to a rheumatologist and 2 neurologists, one an MS specialist. I am being told to learn to accept and live with what is happening until something measurable shows up somewhere or it goes away. I am doing ok with the acceptance but if anyone has ideas, I'd be glad to hear them. I went to a naturopath who thinks I may have an issue with my natural cortisone systems but I do not understand what that means.
    Hi, after reading you post I thought I was reading mine. I have almost identical problems. My patchy numbness started in my big toe and has gradually moved up my legs to just under the knees then it started in my left little finger and moved to my wrist, I also have patches on my scalp and my tongue, torso and back. I have been through numerous blood tests and the Neurologist and Rheumatologist cant find the cause. Its a mystery but the numbness continues to worsen so much so that now it seems to be weakening my muscles and I am finding it difficult to walk in a straight line. I have had this for around 10 years now and what ever it is I am fearful of what my future holds especially now that my muscles are now involved.

     
    Old 03-20-2007, 04:57 AM   #5
    zandvoort
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    Re: 7 month puzzle- Can anyone solve?

    Jollygirl50- Wow! I cannot even tell you how much your post means to me. My problems started last July in my right big toe and then my right pinky finger in early September. But by mid October, it was everywhere. It sounds like I progressed faster than you did but it is nice to hear you have been dealing with it for 10 years and you are still functioning. I too worry about the future. I've re-defined what 'normal health' is for me to keep my sanity but when a new symptom develops or an old one gets suddenly worse, I get kind of crazy until I can live with it for a bit and add it to my definition of 'normal'. Ten years of searching must have brought you a lot of information. If you have any more to share, I would love to hear it!

     
    Old 03-21-2007, 11:40 AM   #6
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    Re: 7 month puzzle- Can anyone solve?

    Hi Zandvoort, It somehow helps knowing you are not the only one with this problem. Unfortunately 10 years of searching and my doctors have come up blank, all she says is that my nerve endings are dying and it is highly unlikely the feeling will return. She thinks my body is attaching itself and that is why my nerves are being slowly destroyed. I have another appointment on the 17th April. The Rheumatologist wanted to try cortisone 20mg for a short while to see if that would help, but since the problem to date hasn't interferred too much in my life, any benefits or improvements probably would not be noticable. The other medication I think was called Plaquenil which would need to be taken over a longer term 2-3 months but once again I didnt think any benefits would be obvious, at least at this stage and maybe it wouldnt have any benefit anyhow. So sorry that's all the information I have. I'm still searching. Perhaps it is some kind of virus I picked up, or another doctor thought I had been poisoned with some kind of heavy metal (lead, mercury etc) or perhaps a pesticide, if so it may have happened years ago, or perhaps it is a rear allergic type reaction to a medication that set it off. It is a mystery.

     
    Old 03-22-2007, 10:20 AM   #7
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    Re: 7 month puzzle- Can anyone solve?

    What did you have an MRI of? You can have all kinds of amazing problems with Spine issues. Has anybody at least looked at your C-Spine?

     
    Old 03-22-2007, 01:14 PM   #8
    zandvoort
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    Re: 7 month puzzle- Can anyone solve?

    Thanks - What's a C-Spine? I have had MRIs on brain and spine but I know not lower spine. I am not sure what part of spine. Can you elaborate?

     
    Old 03-22-2007, 08:53 PM   #9
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    Re: 7 month puzzle- Can anyone solve?

    Sure, no prob...

    C-Spine is the Cervical Spine which is your neck. T-Spine is Thoracic Spine which is your upper half of your back. L-Spine is your Lumbar Spine and the lower part of your back and the S-spine is Sacrum Spine which is basically what you sit on.

    There are 7 vertebra in the c-spine, 12 in the T-spine 5 in the lumbar and 5 in the sacral.

     
    Old 03-23-2007, 06:50 PM   #10
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    Re: 7 month puzzle- Can anyone solve?

    i was going to ask the very same question as PD above.the c spine is the actual neck area.so they just did the brain and part of your spine?did they actually use any contrast(dye?)the C spine is in the neck then the chest area is called the thorasic,then after that(the low back) is the lumbar,then around the and just above the tail bone is the sacral region.

    i really do think at this point you really need to see an actual neuro SURGEON.a neurologist is great for headaches and the more minor type neuro issues but you really are having some very pronounced neuro issues and a NS can really help to identify a possible source.i also think you really do need a full spinal MRI and possibly a brain MRA which is done the same exact way as an MRI,but the changes are at the tech end not anything you have to actually do,this type of scan actually just highlights only the arterial structures within the brain and nothing else.it just gives a much clearer pic of the arteries which can,in certain areas be completely obscured from view upon MRI,since MRI basically lokks at the more soft tissue type structures,this would be one of the best ways(other than an angiogram)to really obtain the best possible look at the arteries in your brain.there could possibly be many different types of malformations within the arteries or branched off into a smaller artery within your brain somewhere which could concievably cause the type of symptoms you are having.just a few possibilities here.but a full spinal MRI since you are not having any real luck with anything else as far as identifying any real key areas as a possible culprit would most definitely be something to really do at this point.

    just where did you have that EMG done and what were the results?do you have actual copies of your test results?if not,get them from your doc or the place where the tests were performed.the thing about any specialist and even primary docs in some cases is they will not always tell you about every single finding on the tests themselves.some neuros just because they don't really know certain types of symptomology with regards to what a certain finding may mean to someone like a neurosurgeon who just understands certain things sooo much better,will sometimes not bother to even tell you about a particular finding only because THEY feel it isn't really pertinent to what your symptoms are,but to a really experienced NS,it would tell a whole different stroy to them.you know what i mean?not every specialist will even have the same actual level of expertise when it comes to specific types of conditions,trust me on that one.i saw three seperate NSs for opinions about my cavernoma within my spinal cord and beleive it or not i got three totally seperate differing opinions with reagrds to what they are,what the real risks are and if surgery was actually even something i needed.it was really unbelievable,but this is the way most specialists actually sre.they will all have differing experiences so they don;t always trhink the same regarding the very same types of conditions,this is why you need more than one opinion.you also need a look at what the MRI findings actually were for yourself.you would be just shocked at what some docs will with hold from a patient just because they do not think it is important.it really is sick.

    i have had to have a total of 16 MRIs and other rad and magnetic tests along with several angios for all my conditons,mostly c spine,and i can tell you even the interpretations of the radiologists who actually read your films are only as good as the overall knowledge and experience of that rad who is reading them.this is another reason most neurosurgeons want to see your actual films and not so much your rad report.any NS who relys solely on that rad report is someone you really do need to run out his office from,asap.

    but you DO need to really see a good neurosurgeon for the best possible,most knowledgable help here and obtain the MRA and the full MRIs.you just really need to be thorough here in order to find the actual Dx of your symptoms,really.there is just alot of testing and rule out and basic detective work that can go into any actual Dx,been there,done that one to death.good luck and please let us know how things are going,K? marcia
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    Old 03-24-2007, 08:33 AM   #11
    zandvoort
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    Re: 7 month puzzle- Can anyone solve?

    Thank you Feel Bad. Your advice is very helpful and I will look for a NS. I love my Neurologist. He spends 2 hours with me at a time and I would hate to have him feel I did not have confidence in him. On the other hand, your point is well taken about all physicians having different backgrounds and experiences and even he said 'if you go to a baker, you get bread'- meaning that his specialty is MS. I cannot decide if I am adopting a healty attitude in learning to live with this or if it is denial. But I know I feel much better when I do not focus on it like I will have to do to find a NS and start again with someone new. Thanks again.

     
    Old 04-04-2007, 09:20 AM   #12
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    Re: 7 month puzzle- Can anyone solve?

    I cannot find an NS that will talk to me. They all say just follow the Neuro. So I will. I am doing really well with acceptance, I think- I just want to be sure that waiting to find out what is wrong is not hurting me.

     
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