Undiagnosed, here to learn...

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Undiagnosed, here to learn...

Postby blue129 » Wed Feb 01, 2012 7:39 am

Hi everyone! I am a 37 y/o female from North Carolina and feel a bit like I'm in an episode of House . For a couple of years now I've had increasing issues with fatigue and memory/concentration. I had bloodwork done in November 2010 and found out my Vit. D was low (14) and likely had been for a number of years. Thought that would solve it, but it didn't.

Then in late June 2011, my body freaked out and I had a whole bunch of symptoms start up almost simultaneously. At first I thought I was having kidney problems and went to a urologist...nope. Then gynecologist...nope. Then primary care...nope. Bloodwork out the wazoo, nothing wrong. Then I started to have some pain in my back (not muscular) so I went to the back doctor and he said I had some strain and degeneration. Aha! That must be the answer! The symptoms went away by September, except for the fatigue and cognition problems (they had gotten much worse during that period, and now went back to their prior level of "off" lol).

Then in early December I noticed the problems starting to creep back in, and by the middle of December they were all back. So now off to primary care again, and he says my symptoms are puzzling and he's not really having an "Aha!" with them, but does mention MS. He orders an MRI with contrast of my brain and it comes back normal, along with all new bloodwork (normal as well).

I ask for a neurology referral and he gladly gives it. I saw her last week and didn't really get a warm and fuzzy from her. She dismissed some of my symptoms as not being neurologic (I respectfully disagree) in nature and has ordered nerve studies that I will have next week. So I don't know what's going on with me, but since both of them mentioned MS here I am trying to educate myself. An acquaintance who has MS also said it sounded similar to what she went through.

Here is the list of symptoms I've been having:

--fatigue

--cognitive problems (short-term memory malfunctions, focus/concentration problems, difficulty finding the right word, having to make effort to do something I would normally do as an almost automatic brain function--like driving or reading)

--frequent, urgent urination

--incontinence (small amounts, this one is new in the 2nd episode)

--bowel problems (it's like the muscles don't work right, consistency is normal but alot of strain--also new for 2nd episode)

--deep spasms in R leg (calf, outside of lower leg, arch). Usually when lying down, but also has happened when seated or standing. Sometimes so severe I get a grade 2 muscle strain.

--smaller spasms or vibrations in both legs and sometimes forearms, followed by sore muscles (when using, not when touching). Sometimes sore muscles when waking, so I think it's happening in my sleep too. Sometimes accompanied by sharp, almost pinpoint pain in the muscle (esp. top of right calf muscle)

--itching. OMG the itching. usually lasts 5-15 minutes then goes away, but occur sporadically like that over the course of several hours. Occurs just about everywhere but around the midsection and butt/upper thighs. Usually with a burning sensation and not relieved by scratching.

--Feeling of pressure/numbness on one particular vertebra--not sure if it's high lumbar or low thoracic (forgot to ask doc)

--waking for no reason/light sleeping (normally not a problem--I think it might be due to the aforementioned spasms)

--numbness/tingling in arms, weakness in hands. Occurs in both, but only one at a time. Sometimes have drawing of pinky finger with it, but rarely. Sometimes arm jerk in sleep too.

--more headaches than usual, and are different from what I'm used to. Most are just headaches, not migraines. I used to have hormone-related migraines but haven't had any in YEARS. The other night had all the hallmarks of one (aura, nausea, vomiting, feeling like pressure was crushing my head/neck inwards but no pain) but it was different than any I had ever had before.

--random electric shock type pains, mostly R chest but sometimes R heel and arms

--visual disturbances. This is really hard to describe, and maybe some of you can help me. I have had floaters, pinpoints, and loss of small field of vision...but I also have experienced another one that I don't know how to describe. It's like when you start to get tunnel vision at the beginning of an aura, but not that pronounced. It's more subtle. Kind of like when you look at really weird carpet or miniblinds and they throw your vision off? Everything is still in focus, but it seems like there's a subtle movement and also shading around the edges of my vision.

--occasional dizziness/loss of balance but rarely and nothing severe

--pain during 1st episode (started in R flank area, then became more generalized in lower back but not muscular in origin) but very little this time around other than aforementioned headaches and very brief shock/pins-and-needles pain

Thanks for bearing with me, and even if in the long run it turns out I don't have MS, I am honored to have "met" all of you and learn about what this diagnosis means to you and your loved ones.
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Re: Undiagnosed, here to learn...

Postby want2bike » Thu Feb 02, 2012 6:09 am

Many things in our enviroment are making us sick. The China Study shows diet is making many of us sick. Changing your diet and getting away from the process foods may help. If you have many amalgam (mercury) fillings that could be your problem. Mercury is the most deadly neurotoxin in our society. We are exposed through dental filllings, vaccinations, and some of the fish we eat. Mercury poisoning has similiar sympthoms as MS.

http://www.youtube.com/watch?v=3obChbjh ... re=related

http://www.youtube.com/watch?v=trWTCEIP ... re=related

http://www.youtube.com/watch?v=XU8nSn5E ... re=related
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Re: Undiagnosed, here to learn...

Postby blue129 » Thu Feb 02, 2012 6:51 am

No fillings and I'm not a member of a Russian crime syndicate, so I'm safely betting it's not mercury poisoning, but thanks! And I generally eat very little processed foods.
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Re: Undiagnosed, here to learn...

Postby want2bike » Thu Feb 02, 2012 9:07 am

Maybe look at what changed in your life at the time you started getting sick. Did you start taking a medication? Did you move to a new area? Did you change your diet? Did you get some vaccinations? What has changed in your enviroment to give you your sympthoms?
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Re: Undiagnosed, here to learn...

Postby blue129 » Thu Feb 02, 2012 9:57 am

Nothing in my environment changed.
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Re: Undiagnosed, here to learn...

Postby want2bike » Thu Feb 02, 2012 11:31 am

Dr. Hyman has an interesting take on disease.

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu
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Re: Undiagnosed, here to learn...

Postby lyndacarol » Thu Feb 02, 2012 6:11 pm

Excellent information from Dr. Mark Hyman!
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Re: Undiagnosed, here to learn...

Postby vcpete38 » Sun Feb 12, 2012 5:19 pm

Where do you live in NC? The reason I'm asking is that Duke has one of the best neurology departments in the country. Last week I had a bout of what turned out to be optic neuritis, which is often a precursor to MS and wound up being admitted to Duke University Hospital to have testing done and get IV steroid treatments.

The neurologist and neuro opthamologist I saw at Duke were both excellent and very proactive. I live in Wake Forest and the 45 min - hour drive was worth it. You may want to look into getting checked out there if you are able to because MS can't be diagnosed with only a brain MRI. I also had an MRI of my spine, a lumbar puncture (spinal tap), and blood work. I go back on March 13th to see the neurologist and hope it's not MS, but it seems to be leaning that way.

Either way, you should get more tests done to rule it out. My aunt has it and says it's important to get on the medication right away if you're diagnosed.

I'm a newbie to this to, but I hope this helps! Best of luck to you.

Vicki
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Re: Undiagnosed, here to learn...

Postby blue129 » Tue Feb 14, 2012 11:00 am

I'm a good hour away from Duke, but my internal medicine doc is with Wake Forest. My EMG/PNCV tests came back normal, my MRI is normal as well. My symptoms are almost completely gone again (except for some cognitive issues and bladder leakage) after sticking around for two months. I have purposely avoided doing anything to treat them, just to see if they would go away again on their own, and they have.

I have a second-opinion appointment scheduled next week with a neuro that's an MS specialist here in my area, just to get his take on it. I know I'm not going to get any diagnosis right now, I'd just like to figure out what the chances are that I might have MS, and if it's not that, then give me a direction to go in to find out what I DO have. The neuro that did my nerve studies wasn't very helpful.
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Re: Undiagnosed, here to learn...

Postby vcpete38 » Tue Feb 14, 2012 2:15 pm

Good luck with your appt for a 2nd opinion. I've got my follow up at Duke on 3/13. They should have my lumbar puncture back by then. Duke is about 45min to an hour away for me to, but it was well worth it IMO.
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Re: Undiagnosed, here to learn...

Postby renee1970 » Fri Feb 17, 2012 11:51 am

Hi I am new here & I have so many of your symptoms. I have been looking for an answer since 2004. Started with a eye examination, I had a Visual Field done for the very first time, they looked shocked when they saw it, I have a Visual Field Defect in my right eye, I never noticed it, I was just in for a routine eye examination to get some more contacts. I was told to go get an MRI which I did, checking for a tumor or MS. Only puzzling symptom I physically felt was burning sensation in my back, like I had a sunburn, never got an answer for that. I have had off & back on again symptoms really starting in 2007 after my son was born. Burning Sensation, Headaches, Tingling in my hands/feet, burning sensations on finger tips or whole hands at times as if I laid them on a stove top burner. My hips/buttocks have had a deep aching pain in them since about 2007 after having my son, dizzy my whole pregnancy, acutul passing out, still get dizzy, not as bad now though. In December my elbow started hurting really bad, has not gone away, has moved all the way down to my hands now, an aching feeling, hurts to just pick a bottle of water up or any motion, feels like something is crawing in my arm & hands now, tingling feeling. Last month I woke up & could not move my left arm, my shoulder hurt so bad, got a cortizone shot, went away after a few days. My left ear I have a hard time hearing out of it, seems clogged. I woke up one morning & could barely walk on my right leg, I limped for days then went away. I forget everything, I mix up my words, a little bit of incontinence about 3 times a month. In 2009 I found out my cousin, my moms sisters son whom is my age was diagnosed with MS, very eerie feeling when I heard that.........

I have had xrays, mri's, evoked potentials, cat scans, blood work............Last Brain Mri was in 2009, Last Mri of the Upper & Lower Thorasic Spine was in 2011, Last Mri of Lumbar Spine was in 2012, just a few weeks ago, Last Cat Scan 2011, Last Evoked Potential 2011, I have had 2 never conductors tests, last one was in 2011, All tests were Normal, Except:

Lumbar Spine, mild disc bulge, on disc L4-L5.........that does not account for all my symptoms..........I have seen 5 neurologist, one specialized in MS, Orthopedics, Rheumotologist just last week whom states he thinks I have Fibromyalgia because they cant find anything else wrong..........he did not test or anything, just assumes I have that. So now I'm doing Physical Therapy, I'm frustrated because I want to know why I have to do Physical Therapy, why am I having these issues & they cant see them from any test run, 2 bad hips, 2 bad arms & hands!!! Now for my back which I do not feel as much pain in at all. These have all crept up on me just this year. Alot of my symptoms are not symptoms of Fibromyalgia. Why not do another Brain Mri since my last one was done in 2009 or even a lumbar puncture. Very frustrated here. I am 41 by the way.
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