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Old 12-03-2012, 11:55 AM   #1
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Question Need help with getting diagnosis

This post will probably be a mile long, so I apologize in advance. I'll try to start at the beginning and keep it short. I am having a bit of an "off" day so I apologize for misspellings, etc. okay, so far I have been diagnosed with migraines, TMJ problems, fibromyalgia, and hypothyroidism. I have been going to doctors for about ten years now trying to get a better answer for all the strange problems I have that come and go and seem to be adding up more and more lately. I see a rheumatologist, a regular doc, have an appointment with an ENT for the pulse-type sound I hear in my right ear, and just recently "fired" my neurologist, whose answer to my question as to whether I could have MS was " I'm pretty. Good at spotting MS". No tests, no anything. The following is a list of my symptoms, some come and go and some are there pretty much all the time, some get worse at times and better at others.

Dizziness
Migraines
Major fatigue
Fatigue and cramp like pain in arms and legs
Trouble going up stairs because of leg weakness and pain
Trouble holding arms over head due to pain
Memory loss
Hearing goes in and out without explanation
Pulse sounds in my right ear 24/7
I can be standing still not doing anything and just start falling backward or to the side
Stuttering that has just started the past 6 months
Strange lymph node swelling that comes and goes
Trouble swallowing
Sometimes i have "off" days where I even forget how to work the television remote control
Cannot concentrate in projects
I have had a few incidents where it felt like I was walking on air or walking sideways when I wasn't.
Confusion, I.e. forgot how to get somewhere that I go on a regular basis
Word finding difficulty
Problems understanding speech
Random shooting stabbing pains in different parts of my body
Arthritis in knees and ankles
Muscle spasms
IBS
Strange rashes
All over random itching for no apparent reason
Night sweats
Recurring red bumps over nose

I think I got them all, but my memory is not that great especially when certain symptoms are not present at the time.

 
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Old 12-03-2012, 01:15 PM   #2
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Re: Need help with getting diagnosis

Welcome!

It would appear that you could have 2-3 different problems presenting based upon the list of problems you noted. Based upon your neurologists answer to you, kudos for firing them because you need the testing. Start with an MS Specialist and run through the gauntlet of tests required for the diagnosis. No one test is specific for MS. Along the way you might be referred to another specialist to attend to the non-MS possibilities. You might need to finish with the referral first or you might be able to continue the diagnostic process. In the end, though, you should have a definitive diagnosis.
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MS onset circa 1977
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Last edited by MSJayhawk; 12-03-2012 at 01:16 PM. Reason: add

 
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Old 12-03-2012, 03:09 PM   #3
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Re: Need help with getting diagnosis

Thanks, msjayhawk, I had thought about going to an MS specialist. Sometimes I try to dismiss the symptoms hoping they will go away and I out off what I know I should do. I just feel like they look at me like I'm insane sometimes when I read off my crazy list of symptoms! I will keep plugging along though.

 
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Old 12-03-2012, 03:16 PM   #4
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Re: Need help with getting diagnosis

I think many Msers felt that way during their earliest symptoms. When you go to an MS Specialist- a good one- they treat you with respect and you do not feel like a nut case. limbo land is stressful and you want to exit it as soon as you can. Just keep plugging along and you will reach you answers. It seems easy to quit when the symptoms "disappear", but when and if the return they often return with an even bigger impact. in the long run, get your answers as soon as possible so that you can make strategic decisions about what you plan to do.
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Old 12-03-2012, 07:19 PM   #5
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Re: Need help with getting diagnosis

Since you are having so many problems and some issues with memory, I would start keeping a symptom journal. Write down when things start, how long they last, if anything helps (laying down? Advil? Cold water? Sleep?) keep track of how often they are happening..

This is all helpful when you go to the next doctor who wants to know "whats going on".

Im sorry you are feeling so badly. I kind of doubt that this is all going to result in a MS dx; however anything is possible. 75% of the things you listed arent actually MS symptoms, but could be caused by the stress of all that you are going thru. Which is real. Very real. I dont dismisss stress as a reason for symptoms!

You defintaely need to find a good doctor. MS cannot be dx by looking at someone. I work 50+ hours a week, drive 300 miles a day, have a high pressure job and work around professionals all day long. At night, I run my household, take care of 3 kids and a husband and on weekends basically spend the entire time catching up on much needed sleep. No one outside my family knows I have MS, but I have over 70 lesions up and down my brain and brain stem...and I occasionally limp from fatigue and foot drop, but people write it off as Im being clumsy. Let them think what they want. Ive been on every MS med known to man, and no one in my medical team questions if I have MS or not....the point being, your doctor should be shot for making that comment.

Good for you for firing him!

Please find a good doctor...call the MS society and get a referral or shout out here and ask if anyone knows one close to your proximity. But, please get an opinion which is based on testing, not guessing!

Feel better soon.
Nikki
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Old 12-03-2012, 08:05 PM   #6
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Re: Need help with getting diagnosis

I was diagnosed with RRMS in 2003, my number one complaint was headaches 24/7, i also have fibromyalgia, and here i am almost 10yr later and still 24/7 headache. But i will tell you that i was sent to one of the top neurologist in my state, along with symptoms consistent with MS, 4 tests were done. MRI is pretty good showing the "white spots" as i call them on the CNS, visual evoked response test, i have to admit not a fun test when your head always hurts, WBC's in spinal fluid is a positive too. My advice to you is to find a neurologist who specializes in multiple sclerosis to ensure that right help can be given to the proper diagnosis

 
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fibromyalgia, lupus, migraine, multiple sclerosis



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