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Avatar universal

Cybercondriac or Just tired of the Health care System, and now taking control of my own health?

I have had a nagging problem for 4 1/2 years.  I have a pain that goes through my arms and legs, an aching dull pulling pain.  Doctor DX me with Fibromyalgia after complete blood panel, ANA, CPK.

9 months ago it took a turn for the worse, I started getting tingling in the hands and feet.  I went to the doctor who said that the neuropathy was not a symptom of the FM, and suggested to go to the Neurologist.  After a visit I was told that my symptoms were less of a nuisance than the treatment for the symptoms (NVC and EMG).  He could not make a DX, just that I had a wasted muscle in foot and an Ulnar nerve problem.

After being prescribed Cymbalta for "Prehiphrial Neuropathy" I changed Doctors to try to get real answers.  New doc looked me over and ordered MRI Brain.  Study came back normal.  

3 weeks later my back went out, called office and asked for Muscle relaxers and Pain med.  Was told that I had to come in.  Doc checked me and said I have a problem after checking my Legs and feet.  (Hyper reflexia and Babinski's in right foot)  Ordered L-Spine MRI.  Findings were Degenerative discs with bulging, I thought Ah Ha! there it is.  Doctor said no it’s not the cause and ordered a C-Spine MRI.  After Results came in the impression was 2 bone spur complexes possible pinching the axial nerves, I thought Ah Ha again!, but no was told that was not it.  So now the doc is not sure what to do, so I found a new Doc....

After visit with new doc (he was the first that did a real thorough evaluation of my entire body) and reviewing all of the charts, said that I need to go to a University level clinic to be evaluated.  I definitly have a Upper Motor Neuron problem, and mentioned Stroke, MS, or other Neurological Disorder.  

So Here goes my Cyberchondriac tendency, I looked up all of my symptoms in the last 5 years, and the closest match is MS.  So I placed a call to the Mayo clinic and they did a phone "interview process"  asking age, symptoms, etc. I received a call back 3 days later telling me I have an appointment scheduled for multiple test over a 4 day period.

I was starting to think that my assortment of symptoms was a sign of being a hypochondriac until reading up on the psychological  process that MS sufferers go through during a DX.  So here goes my list -O- symptoms, I hate to have an incurable disease, however It would be worse to live a life suffering and it being dismissed as some personal weakness or is just imaginary!

1998 – Vertigo (1/2 the year – both real vertigo and general dizziness)
1999 - Smelling imaginary Kerosene (Phantosomia) (12+ Times a year)
2000 – Sudden hearing loss, lasting less than 2 minutes with profound ringing in ear (12+ times a year)
2001 – Acute Constipation resulting a Fissure and has repeated itself 2-6 times a year since, regardless of diet!
2004 – Headaches, followed by a BIG ONE that resulted in a CAT scan to R/O Stroke, aneurism
2004 – Pain in Arms and Legs
2005 – Fatigue, enough to cause me to stop and rest most of the afternoon was shot daily
2006 – Numbness in Hands 4/5 Digit
2007 – Difficulty holding arms over head for more than 2 minutes – fatigue?
2007 – Sever pain in feet followed by pins needles, lasted 3 weeks (now pins and needles often and loss of sensation)
2007 – Severe pain in left side of neck, pulsating throbbing that lasts about 5 minutes at a time
2007 – Vision Fuzziness/blurriness during the Arm/Leg pain times, or fatigue times – I have Keracotonus – so I assume it was that?
2007 – Decompression Sickness “The Bends” Type I from Scuba Diving– only effecting left index finger.
2008 – Trembling in hands and feet, feels like walking on a trampoline when on stairs at times
2008 – Buzzing in head and arms/legs (about 10-15 Hz?) notice it in jaw at teeth chatter.
2008 – Difficulty swallowing (Like I stutter, or forget how to swallow when swallowing liquids or nothing – also makes a clicking noise now – like a bone is popping)
2008 – Right Leg is heavy ½ - ¾ of the time, seems stiff and have a limp ½ the time.
2008 – Problem with short term memory, even important things seem to slip my mind after the fact
2008 – Problem with words, specifically speaking words that are more complex in description or idea.  Seem to type them ok?
2008 - Right foot can’t tell difference between hot and cold, both hurt.

So you tell me, am I a Cyberchondriac or taking a logical approach to this “premature, uneducated, self DX”

Thanks for any response, I know a lot of you have been here and done this :)
12 Responses
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428506 tn?1296557399
Hi,
If you can get into a regular opthamologist b4 Mayo, I'd do it.  They might be able to tell you if your vision problems are retinal or not.  A lot of times, neuro eye problems can not be seen by a regular eye exam.  I'd think having that info before you get to Mayo would be a good.

Best of luck!
Helpful - 0
Avatar universal
Update:

I have recently had some new things happening..  

1. Fasciculation in the heavy right leg, calf to ankle and inside of foot, constant for the last 4 days.
2. 3-4x Increased floaters in my left eye, and darker area (comes and goes - almost lattice looking)
3.  Dizziness when moving my eyes, kind of flashing when moving - or loud sounds.

I am trying to decide if I should go to the ophthalmologist this week, or wait since I am having the work up at the Mayo next Monday.
Helpful - 0
Avatar universal
Thanks Maggie,
My last appt with the PCP he mention that there is a definate problem in the Upper Motor Neuron area. So I did a little more research - the term Upper Motor Neuron Disease is specifically talking about ALS, PLS etc..  I wanted to get an answer, however I dont think that was what I was looking for.  I think I'll just stop looking until I see the Mayo, I probably will drive myself crazy trying to figure it out.  Ill post my findings in a couple of weeks.  
Helpful - 0
Avatar universal
Your writing is very logical and concise. And you have documented symptoms per your other doctors. I think it is very courageous fo seek answers. And I also think it helps to cyber-surf to educate yourself. Good luck. Since you have the insurance, ask them to run any and all tests for mimics as well as for MS. Good Luck, pleae post and let us know how it goes. Some people have good luck with Mayo, others haen't. Maybe just which docs you see.

Maggie
Helpful - 0
Avatar universal
Thanks Elaine,

They are an in Network Blue Cross PPO provider for me, so it might be worth a shot.  I have only had extensive blood panels with ANA and RH as well as CPK, each time they are normal.  The Neurologist that I am seeing is Dr. Jonathan Carter, he seems like his speaking engagements is in favor of the early detection and treatment of MS.  Since I cant get and appointment elseware as soon as the Mayo, Ill give it a shot..  Ill let you know how it goes.

Thanks again  :)
Helpful - 0
Avatar universal
Have you ever had a Western Blot blood test for Lyme disease?

Elaine
Helpful - 0
Avatar universal
Well, since you asked about the Mayo Clinic, I think I should tell you my husband, Craig's, experience.

Nov.2006.  Went to the Rochester Minnesota Mayo clinic.  Went to see why he lost 40 percent of his spine due to spine osteoporosis at the age of 47.  After two weeks of tests, they came up with no answer.  They said they had never seen 40 percent bone loss and had nothing to say.  HOWEVER,

The doctors at Mayo did say that they documented Craig's inability to lift his legs when lying flat and loss of motor function.  They said he most likely has a neurological disease and COME BACK WHEN IT GETS WORSE.

I would recommend staying away from Mayo if you will be paying cash or alot of out of network money expense.   They also have a position of not recommending treatment of MS with drugs in the early stages.

Sorry to not have anything good to say about them.  I think Mayo is conventional medicine at its worst.

Elaine
Helpful - 0
Avatar universal
Thanks Kathy,

I have a few short weeks until I hope to learn something that is of value - or that I can do anything about :)  

Has anyone here had experience with the Mayo Clinic?  I am wondering what to expect.. Thanks for everyone being so kind, It's nice to have a place where eveyone seem eager to accept, and understand..
Helpful - 0
405614 tn?1329144114
You're welcome to go check out my journal; What I've lost due to Health Issues tells more about my story, and my timeline of health issues for my next neurologist is there, too.

I've found that you can make changes if you do them one at a time.  Like, leave the mayo off the burger.  Get used to that.  Leave the cheese off.  Try a whole wheat bun.  Try adding tomato slices, lettuce, etc.  Try using ground turkey breast instead of ground beef.  You get my drift.

Wishing you the best,

Kathy
Helpful - 0
405614 tn?1329144114
Hey, Big Guy!

You communicate your problems quite well on paper.  You can take the paper with you and refer to it so you can clearly state what you've been going through.  You might still run into people (doctors) that don't understand, but by then you have practice and get even better at telling your problems, and you will find the doctor that listens and understands and helps you find answers.

That's the theory, anyway.  Just kidding, it has really worked out for quite a few people.  I'm still working my way through Limbo Land (the undiagnosed).  Try being an overweight woman; people thing you suffer from anxiety or depression and discount your symptoms.

I am finding strength from the wonderful people on this board.  There is such a wealth of knowledge and experience here, as well as caring and compassion, that I've been able to continue on my quest for answers.  I continue to believe in myself and my right to answers even after two neurologists have dismissed me.

I hope your appointment at the Mayo clinic brings you closer to real answers.

Kathy
Helpful - 0
Avatar universal
Thanks,
Its difficult to talk to people about the problems - seems like no one understands.  I get so frustrated at times, and tend to respond to questions like "what's wrong?" with an aggrevated "nothing!"  I always end up being the bad/grumpy guy cause I dont share enough of what I am feeling.  Im a pretty big guy 6'0" and 240lbs, and to say Im very tired, feeling week, or I ache - comes across in pretty pathetic sounding.  Alot of people have told me it been my choices in nutrition / physical routine / stress and I need to make changes.  The problem is, I can't get out from under the symptoms enough to make a change!

Oh well,
Thanks for listening...
Helpful - 0
198419 tn?1360242356
No TC - Very logical.  Not hyper or cyberchondriac.  I'm so very glad that a lot of the problems were documented by Docs.

Welcome to our group.  I'm sure a lot will have something to say.  In the meantime, please review our healthpages located in the top right hand corner of the page.  There is a lot to be learned from them.

Glad you found us.  Glad too that your appt is lined up.  I think the way you described everything here is very logical and would be a great way to describe to the Docs there in this manner.

NICE job!
Hope you stick around!
be well,
-SL
Helpful - 0
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