waiting for definitive diagnosis and need feedback.

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waiting for definitive diagnosis and need feedback.

Postby scaredtd » Wed Jul 17, 2013 10:18 am

hi all,
I am waiting diagnosis. 2 doctors have suspected ms but am in the process of getting tested. I have been searching for answers for 12 years.
I went to my PCP for years, complaining of "episodes", the term I coined. I just felt horrible. during these times I could not function. extreme fatigue, "brain paralysis" severe arms and neck pain. clenched fists while sleeping. waking up sore. Then the episode would pass and I could function again.
these cam about twice a year or more, lasting weeks then months.
I now have more physical symptoms then I can list. pins and needles in my feet, (no diabetes) twitching fingers and tremors on my right arm.
the most uncomfortable is a tightening of my neck and esophagus, fluttering in my chest, pain in my throat and a burning feeling under my breast bone. not heartburn.
when these symptoms happen I et a strange buzzing tingling in my brain, head. feels like a electrical storm in there.
then we have the neurological symptoms that scare me most. I can converse with people, I sound normal. My analytical brain works.....but I have severe deficits, like not being able to gauge amounts, do simple math, read, understand a television program. put groceries in the wrong cupboards. not feeling efficient.
I used to be.
could I have had a stroke?? TIA's??? or does this fit with MS?
I am a fiftiesh woman, who has had hyperactive bladder since my late 20's. still do. but as all these symptoms, they wax and wane, come and go.
I am not fond of doctors, not a hypochondriact,. My PCP who took over this practice knows me for 5 months only and thinks I have symptoms of dissosiative disorder. never had any mental problems before.
But he agreed to refer me to a neurologist.
any feedback would be appreciated.
peace
scaredtd
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Re: waiting for definitive diagnosis and need feedback.

Postby euphoniaa » Thu Jul 18, 2013 11:05 am

scaredtd wrote:hi all,
I am waiting diagnosis. 2 doctors have suspected ms but am in the process of getting tested. I have been searching for answers for 12 years.

could I have had a stroke?? TIA's??? or does this fit with MS?

any feedback would be appreciated.
peace


Hi scared & welcome! I noticed your post had no replies, but I think that's because we can't really answer your main question -- we're not doctors. :smile: You have a large assortment of miscellaneous symptoms, and many seem neurological, but most neurological conditions share many symptoms. In 12 years, someone should already have checked you for stroke/TIAs, and, if they suspect MS, they should have done MRIs. I hope the neuro finally does that.

As for MS, all of us have our own unique assortment of weird symptoms, so comparing ours to yours doesn't help much either. And there's no sure fire test for MS anyway. Sorry. :sad:

In my case, I was 52, with the same sort of history of waxing and waning weirdnesses that you do, but had finally developed a healthy routine that made me feel stronger & healthier than I had in my whole life. And I had alleviated or adapted to most every symptom. And then...a physiatrist (a physical medicine/rehab type doctor) did a quick neuro-type evaluation and sent me straight for brain & C-spine MRIs, where we found my brain was jammed full of classic, MS-specific lesions. Instant MS diagnosis.

Although I've progressed some in 10 years, I'm doing okay and still working full-time. It wasn't the end of the world at all! So take a deep breath, relax, make yourself at home here, and wander around the forum. There's plenty of information to go through, although you don't have to buy into every one of the ideas we come up with here. :-D Take your time and feel free to ask more questions.

Good luck and keep us posted!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: waiting for definitive diagnosis and need feedback.

Postby scaredtd » Fri Jul 19, 2013 7:59 pm

thanks for the reply eupho,
I guess we will wait and see.
I am seen by a different doc at nearly every visit. so continuity of care in non-excistant for me.
I also tend to avoid doctors....but symptoms have been worsening and I can't ignore anymore when I start twitching and dropping stuff.
I'll keep you posted.
peace
scaredtd
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Re: waiting for definitive diagnosis and need feedback.

Postby CaliReader » Fri Jul 19, 2013 8:35 pm

A couple pieces of advice.

First, when talking to doctors, if you have a lot of symptoms, choose 3-4 to talk about. Also, especially with a neurologist, choose muscle control symptoms rather than pain or tingling or buzzing. You mentioned dropping things. That would be the sort of thing they would notice and care about. I learned this the hard way. Lots of conditions cause pain. Fewer cause failure of muscle control.

Keep your cool if you can. The articles I've read explaining the MS diagnosis process say that psych issues are one of the most common things that look like they might be MS but turn out not to be MS. Don't waste time being unhappy about suspicious doctors. Just point to the symptoms that are most likely to be only caused by neurology problems, and demand that they give you the right blood tests and MRI's to show MS.
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Re: waiting for definitive diagnosis and need feedback.

Postby scaredtd » Sat Jul 20, 2013 9:55 am

it feels like tightening of muscles....neck, shoulders upper back, arms... then pain so bad. like I just exercised like crazy, sore...but didn't.
bumps that are not tender on the inside of my elbows that come and go.
sometimes I feel I can't continue. not depressed, more frustrated and scared. find my self just crying and not sure why.
I have known something is very wrong for a very long time....but doctors have not been able to tell me what is happening.
every doctor has a different opinion.
One said I had black mold toxicity, another said a systemic yeast thing, another interstatial cystitis, sleep apnea, whatever specialist seems to diagnose his specialty.
I can't possibly have all these separate things when all symptoms happen together.
Unfortunately, I am very sane. and tenacious and curious and smarter then the average bear, so I will not give up.
but somedays, I want to.
peace,
scaredtd
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