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bluebottle

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PALS
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uk
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england
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england
Hi I am new and only sure that something is not right. I have seena neurologist and had EMG/NCS but awaiting results although I was told I definately don't have a neuropathy. I have very weak legs with noticable muscle wasting. I twitch in the lower back and people keep asking me if am cold :? I get really quite tired - mentally and physically, although that could be just about anything! I have lost weight but suspect much of this is because I have lost so much muscle mass. I have a good appitite but two sizes smaller now. My thyroid is absolutely fine but I am producing too much thyroid hormone. My creatinine is very slightly elevated. I know you are not doctors and not seeking a diagnoses - but my question is how long to get a diagnoses, whether any more tests likely and whether I should be here?
 

Al

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Hi bluebottle. Welcome. If you're seeing a Neurologist about a possible MND then this is as good a place to be looking for information as there is. Usually an MRI is done to rule out tumors and possibly a lumbar puncture and if still no diagnosed then possibly a muscle biopsy. There are people here that still do not have a positive diagnosis after a few years. The MND's and their variants can be tricky to diagnose.
AL.
 

bluebottle

Active member
Joined
Mar 12, 2008
Messages
36
Reason
PALS
Diagnosis
09/2008
Country
uk
State
england
City
england
Thank you Al for your welcome. Thank you for your advice too - after the EMG the neurophysiologist said she would write to my neurologist and ask him to look at my back.

Sorry - another question, Is it possible to have MND or one of its varients but have no neuropathy on EMG testing?
 

Al

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PALS
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Country
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State
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NW of Toronto
I believe there are a few on here with clean EMG's and still have major symptoms but no specific diagnosis.
AL.
 

bluebottle

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Reason
PALS
Diagnosis
09/2008
Country
uk
State
england
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Ah- sorry to be a nuisance - from what I gathered the nerve conduction test was clear, just a bit of sensation nerve lost in the lower leg. I was told I definately don't have a neuropathy. I then had the EMG to test but at the end of that test did not get told I definately don't have a whatever but told that it would be necessary to investgate my back. Sorry may have confused things by using the wrong terminology. Is it possible to have MND but with a clean NCS? Is the normal route, if there is one, to have a back examination if there is anything on EMG? Thanks
 

Al

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Joined
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Messages
7,960
Reason
PALS
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Country
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NW of Toronto
No problem. Most docs rule out the back stuff first then do the EMG NCV. I would think it was a good sign they are looking at your back.
AL.
 

bluebottle

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Messages
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PALS
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09/2008
Country
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thank you just read your story - an inspiration - i am, just hanging on, in the emergency service
 

Bobby C

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Joined
Dec 31, 2007
Messages
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Reason
PALS
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12/2007
Country
US
State
Texas
City
Austin
The tests I went through: Vitamin B-12 deficiency - normal. MRI: brain and lumbar to rule out connection to previous surgery connections - normal. EMG and NCS, MRI on cervical region to rule out cervical spinal stenosis. Second opiinion (recommended by first neuro). Many many more blood tests, Athena Lab included. Neuromuscular specialist: Repeat EMG and NCS. Spinal Tap. Other blood tests. Glucose testing for diabetes revealed glucose intolerance. After all this, diagnosis: she thinks it is PMA (prgressive muscular atrophy.) Almost complete loss of balance. Severe weakness in left leg, some in right leg. Muscle twitching, upper and lower. No pain. Wear ankle/foot braces. Assisted walking with cane at first, now walker. Use electric scooter when longer distance is involved. Rilutek side affects caused neuro to tell me to stop taking it until I see her at the ALS Clinic again (this will be quarterly the rest of my life.) I see her again Wednesday, March 19, 2008.

I hope this info helps.
 

bluebottle

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Joined
Mar 12, 2008
Messages
36
Reason
PALS
Diagnosis
09/2008
Country
uk
State
england
City
england
Thanks Bobby for your reply. My goodness you have really been through the medical tests mill- it was exactly that I was hoping to avoid. So far I have had blood tests with some abnormalities, raised TSH (twice and rising), raised creatinine (very slight) slight amemia, and raised protein - again very slight. All of these tests will be repetaed again soon. I have very noticable atrophy in my legs. So did your EMG show no neuropathy but a myopathy? It was only 6 weeks ago I had the test and just getting impatient for something to happen - it just seems to take an age - how long did all your tests take before you had a diagnoses?
 

Bobby C

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Joined
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Messages
40
Reason
PALS
Diagnosis
12/2007
Country
US
State
Texas
City
Austin
Hi again. My tests went from April 2007 through December 2007. Seemed like a long time, but I have read many posts where some have gone l, 2, or 3 years before getting a DX. I was lucky to get a good neuro the first time. She gave me a referral for a second opinion at the University of Texas Health Science Centerin Dallas. There, the neuro guessed right - motor neeuron disease. Then to the neuromuscular specialist at the UT San Antonio Health Science Center's ALS Clinic. No neurophy. Just some wasting of the muscles. No pain. Pain with this condition would be a double whammy. But not a week goes by that I don't see some one much worse off than I am. My wife of almost 55 years has been a "tower of strenth" to quote Lou Gehrig. Also the children - one son and two daughters. Our oldest daughter has decided to learn how to drive the motor home so that she and her husband can accompany us to my wife's family reunion at Lake Seely, Montana in August.
 

bluebottle

Active member
Joined
Mar 12, 2008
Messages
36
Reason
PALS
Diagnosis
09/2008
Country
uk
State
england
City
england
\\\ah so I am a complete novice at just 8 weeks then = OK need to be patient. Can I ask another question - just now I am starting to have a sensation like a very rapid heart beat under the skin by my thigh muscle - is this a sign that the muscle is waking up and attempting to try and do soemthing - this is in my first weak leg?
 
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