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Old 05-23-2012, 04:38 PM   #1
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Looking for answers

I have posted this in the MS forum as well. I am looking for some perspective on this whole thing and trying to figure out what my next step should be.

For years I have suffered with all kinds of symptoms, mostly to be told by tons of doctor's "you're anxious, you're too stressed". I admit, I have anxiety, but I do not feel that anxiety can cause all this. Most days I do not feel overly anxious but I will admit, some days the symptoms I am having do cause anxiety/panic.

Most days I am in pain, usually my legs, sometimes my hands and sometimes all over. It hurts to get out of bed in the morning. I can barely put weight on my feet/legs and I have to hobble in pain for a while before walking. Over the years I have had various odd sensations,uncontrollable itching (nothing there) tingling in face, hands, legs, bouts of vertigo, nystagmus, oscillopsia, lightheadedness and dizziness, brain zaps, exhaustion (not the tired feeling like you need a nap, although that happens too, but a feeling that you are tired right into your bones and that if you don't lie down you will just fall down) weakness and most recently, jerking muscles, tremor, zaps in my body, muscle cramping and spasms (some are painful, some just look odd) a feeling like my phone is on vibrate in my bra, painful skin (painful to the touch in some spots and once all over like I had a sunburn but nothing was there).

I have been blown off by Drs. more than I can count so when my latest Dr. noticed hyperreflexia with clonus in both arms and legs she sent me to a neurologist. I had my appt with him yesterday. It was a total waste of a day off works and the gas money it took to drive the 1.5 hours to get there.

He asked my symptoms, wrote them all down. He then looked in my eyes, tested ONLY my knee and bicep reflexes (which were hyperreflexive with clonus), had me stand, walk, close my eyes, poked me with a pin in hands and feet and then declared me normal, nothing wrong. He then said he has no idea, I wouldn't need an MRI and that it could be anxiety and that I should seek counseling. UGGH! He said, could be fibromyalgia (without checking any tender points) and gave me a prescription for Gabapentin and instructions to come back in 3 months. I asked if the zaps and jerking could be caused by Epilepsy ( I was epileptic as a child). He said no, if it was epilepsy you would be unconcious. This is when I realized I really didn't trust him as I know that there are myoclonic and simple partial seizures that do not cause unconciousness.

Now don't get me wrong, I do not want a horrible disease, but I do not want to continue in this state of misery only to be told I have a mental health problem. Today I am in so much pain I am nauseous, but I don't trust that Dr so I am wary of just taking the pills when I feel like his info is outdated.

I guess my only question is does anyone have an idea what this could be (I get that you are not Drs. but you guys have been there, am I barking up the wrong tree here? Should I just ignore all this mess or is there a benefit to pushing to find out what it is? Has anyone taken Gabapentin (I think that is how it is spelled) and what are the side effects? Is this just anxiety/stress?

 
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Old 05-23-2012, 10:29 PM   #2
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Re: Looking for answers

I'm not sure I can be much help, but I know what it is like to have so many reading your question, but no one leaving a post back. I think I would Call my primary Dr. And ask for a referral to another neurologist for a second opinion. This one just didn't seem to be a right fit for you or maybe not anyone. Hate it when a Dr. Doesn't listen to me - it's my body. I know it best!
You can put gabapentin in the search at the top of this page, and it will bring up posts about it. Should be able to find answers to your questions in those.
I know you don't want to have a serious illness. You just want to know what is making you feel this way. We all deserve that!!
Hugs and best wishes in your search......

 
Old 05-24-2012, 03:19 AM   #3
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Re: Looking for answers

I know how frustrating not getting a diagnosis can be it took 8 years to get mine, and many times I felt like giving up. Keep going you will get there. The problem with a lot of these conditions is that they are similar and difficult to diagnose.

A lot of your symptoms sound like mine, I have fibro, osteoarthritis and something else they are still trying to work out. My rheumy is great an kept investigating but my previous one was awful. Get yourself a doctor you feel comfortable with, one who listens that is half the battle. Your pain is real it is only why is uncertain.

Best of luck
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Old 05-24-2012, 03:20 AM   #4
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Re: Looking for answers

I know how frustrating not getting a diagnosis can be it took 8 years to get mine, and many times I felt like giving up. Keep going you will get there. The problem with a lot of these conditions is that they are similar and difficult to diagnose.

A lot of your symptoms sound like mine, I have fibro, osteoarthritis and something else they are still trying to work out. My rheumy is great an kept investigating but my previous one was awful. Get yourself a doctor you feel comfortable with, one who listens that is half the battle. Your pain is real it is only why is uncertain.

Best of luck
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Old 05-24-2012, 07:53 AM   #5
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Re: Looking for answers

I experience alot of what you do. I was diagnosed with Fibro and doctors still not sure what else could be going on as tests have come back normal. I have had tons of MRIs done and don't have MS. I do have a cyst inside my spine that they have no idea why or if it is causing alot of my zapping. My neck and face go numb and also feel tingling.

You are your best advocate and keep going to doctors til you find one that will listen to you. HUGS!!

 
Old 06-03-2012, 05:36 AM   #6
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Re: Looking for answers

The search for answers and a Dr that'll listen is a frustrating journey most of us with FM have gone thru. It took me about ..ummmm.. crap I forgot how many years..at least 8 or so to find a Dr that would listen and even then it took 2 years of testing to rule other things out before he diagnosed me with FM.

Have you gone to a Rheumatologist yet? I'm sure by now you are sick of drs, but if you haven't been to one I'd recommend it.

 
Old 06-04-2012, 06:02 AM   #7
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Re: Looking for answers

Not yet, multiple Drs have done blood test for arthritis, but so far ALL tests have been normal. Thanks for your reply. It helps to know that other people can commiserate.

 
Old 06-04-2012, 06:07 AM   #8
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Re: Looking for answers

Every single Dr. I see, for the past 12 years tests my thyroid and it always comes back normal. I am seeing my newest Dr. in a couple of weeks, she is finally back from maternity leave. I am hoping to get some shred of hope at this appt. So far she (and her associate that took her appts while she was gone) are the only ones who have taken me seriously without completely blowing me off in the first 5 minutes saying that I am just stressed. Even my best friend is now telling me that I am just stressed. UGGH! Not to be rude to people, but some days I wish my loved ones (well not my kids, they are always loving and tolerant of the days I don't feel well, but they are 12, 8 and 6) but especially my close friends and hubby (who says with exasperation "what's wrong with you now!", when I say I feel sick) could just feel this bad for even ONE day and understand what I am going through EVERY SINGLE DAY!

 
Old 06-04-2012, 08:00 AM   #9
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Re: Looking for answers

Hi TMF...I hope you get an answer soon! I know how it can be trying to find the right doctor. I was at first dx'd with RSD and after reading up on it decided to go to a Rhuemy and finally got the correct dx of Fibro. Both are bad to have and meds similar but at least I know I can get a better handle on the Fibro. Once again good luck with the new doc and welcome to the boards. Lots of great help here...keep us posted!
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