And this is why we keep suggesting Physiatrists

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And this is why we keep suggesting Physiatrists

Postby euphoniaa » Sun Jul 22, 2012 8:30 am

Subtitled: Part 2 of “Ho-hum, another day, another doctor, another diagnosis” (although I guess most of my diagnoses are still pending more test results).

However, I have to share my story about my latest visit with my Physiatrist on Friday, to encourage those who are having trouble getting diagnosed with anything to make an appointment with one. Mark Lavelle knows what I’m talking about (Hi Mark!).

I know the definition has been posted before, but these guys are Physical Medicine/Rehab doctors – neuro, muscular, skeletal, spinal doctors. They’re not just looking at the neurological signs of your complaint. And mine is amazing. He recognized my Dad’s Peripheral Nervous System (PNS) issues years ago and sent him for genetic testing – dx was HNPP. His investigation of my finger tremor 9 years ago resulted in EMG tests, brain MRIs, and a diagnosis of both MS and HNPP.

This month I’ve been having all kinds of both new & chronic pains, jerks, twitches & spasms in my right leg (the non-MS one), which actually keeps dropping my leg out from under me, so I went to him again. I’ll tell you, I don’t know why I shouldn’t just make my annual visits to him instead of my neuro.

Anyway, this is an example of a great diagnostician. He immediately pointed out that my left leg exhibits the obvious hyper reflexes of MS. We already knew that. But my right leg is almost the opposite; it’s way more complicated, and he suspects much of it will turn out to be the peripheral nerves from HNPP (Hereditary Neuropathy with liability to Pressure Palsies), even outside of my other complications.

Also, my knee was chipped in high school, and I’ve had that kneecap taped into place. And the pressure of the cast caused a varicose vein from hell. And I’ve had bursitis in my right hip. And the doc confirmed Piriformis Syndrome (or Piriformis Palsy) in my lower leg – a dx that a PT had given me a year ago. (This is my sciatic nerve (a peripheral nerve) getting “strangled” by my piriformis muscle – hence a “palsy”). None of this is from MS.

During the EMG tests of my right leg, he kept shaking his head and muttering that pretty much every signal/reflex shows up as abnormal. That’s me. So, he could go with the current multitude of diagnoses and tell me I’m hopeless, but no, he said it looks like I have a problem with my lower back as well (I hadn’t mentioned my back a single time). So, now he’s sending me for an MRI of my lower back next week, and also of my C-spine due to previous whiplash episodes (it hasn’t been filmed since 2003), and a leg x-ray. He’s trying to identify something that’s at least treatable.

So…like I always say, “It’s not always MS, it’s not always MS, it’s not always MS.” And, “Why don’t you try a Physiatrist?” And, “If MS disappeared from the earth overnight, I doubt that I’d even notice!” :smile:

Good health & good humor to all!

***************************************************************
Below are links & info.
Piriformis Syndrome from Wikipedia:
http://en.wikipedia.org/wiki/Piriformis_syndrome

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Physiatrist info from the organization site:

http://www.aapmr.org/patients/Pages/default.aspx

"A physiatrist, or rehabilitation physician, is a medical doctor who has also completed residency training in the medical specialty of physical medicine and rehabilitation (PM&R). This physician is a nerve, muscle, bone and brain expert who diagnoses and treats injuries or illnesses that affect how you move. The physiatric approach to patient care looks at the whole person and not just one symptom or condition. Rehabilitation physicians do not perform surgery."


Some of the conditions physiatrists treat:
Brain
Traumatic Brain Injury – mild to severe
Postconcussion syndrome
Hypoxic brain injury
Stroke/Cerebrovascular accident
Post operative brain injury (function)

Spinal Cord Injury
Traumatic SCI
Nontraumatic SCI
Post-operative SCI (function deficit)

Central Nervous System
Parkinson’s
Multiple Sclerosis
Dystonias
Leukoencephalopathy
Autoimmune (lupus)
Infectious Encephelopathy

Myopathy
Muscular dystrophy
Myotonia
Myopathy associated with disease or medication

Neuromuscular/ALS
Amyotrophic Lateral Sclerosis (ALS)
Post-polio
MyAsthenia Gravis

PNS (Peripheral Nervous System)
Peripheral neuropathy
Isolated nerve injury/dysfunction
 Bell’s palsy
 Peroneal Drop foot
Carpal tunnel syndrome
Cubital tunnel syndrome

Plexopathies
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: And this is why we keep suggesting Physiatrists

Postby MarkLavelle » Sun Jul 22, 2012 10:03 am

euphoniaa wrote:So…like I always say, “It’s not always MS, it’s not always MS, it’s not always MS.” And, “Why don’t you try a Physiatrist?”
Geez! Talk about a broken record... :wink:

I'm convinced that some of us have been put on this earth just to give doctors something interesting to do. :roll:

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: And this is why we keep suggesting Physiatrists

Postby Jewels70 » Mon Jul 23, 2012 7:39 pm

Thank you for your experience, I'm going to look into this It has t been long for me compared to others but I can't sit back and do nothing. I never heard of a Physiatrist until I joined this site. More research. To do. Thanks again.
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Re: And this is why we keep suggesting Physiatrists

Postby euphoniaa » Tue Jul 24, 2012 5:40 am

Jewels70 wrote:Thank you for your experience, I'm going to look into this It has t been long for me compared to others but I can't sit back and do nothing. I never heard of a Physiatrist until I joined this site. More research. To do. Thanks again.

Good luck with your continued search for answers, Jewels! As an FYI - keep in mind that physiatrists may not specifically call themselves that in the phone book, for instance, but will be under something like mine is - "Physical Medicine and Rehabilitation." I think that's because it's easy to confuse with titles like "psychiatrist," and it's also more descriptive.

I was referred to mine 9 years ago by my GP, so you might even ask one of your doctors to recommend someone. That's when I saw the term for the first time - on his paperwork. I tried to see if there was a list of them on their organization site, but I can't get the link to work this morning.
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: And this is why we keep suggesting Physiatrists

Postby Jewels70 » Tue Jul 24, 2012 8:42 am

Ok that's good to know. Thank you again. It's worth a try anyway.
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