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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 06-20-2011, 07:57 PM   #1
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DeniseA HB UserDeniseA HB User
I'm back. progressed a bit. Need some advice

Thanks for taking the time to read my post. Im very scared and alone. I would love to get your opinions on this. I make it in chronological order.

Late March:
- Pain in ankles on waking ( overlooked, I am overweight)
- Off and on vertigo
- Smell strange odors, others couldn't smell

Early April:
- Weird sensation in both legs
- Tingling, kind of numb like feeling in legs
- Stomach pains
- Weight loss
- Constipation
- Sharp pain in buttock
- Vertigo continues

Mid April:
- Came down with virus
- No appetite
- Severe abdominal pain
- GERD - started taking nexium'/ Zantex (little relief)
- Headaches
- Legs shaking/quivering
- Ultasound (normal severely constipated)
- Diagnosis- severe pain due to constipation. Prescribed meds--felt better for 24 hrs
- Also, very dehydrated.
- twitching in legs and shoulders blades only. (thought it was due to virus)
- Internal tremors upon waking
- Wake up out of breath


End of April:
-Cramping of right calf in morning
- Wake up out of breath
-Twitching of legs, shoulder blades continue
-Legs shaking constantly (especially upon standing)
- Pressure headaches
- Daytime sleepiness
- Chest xray (lungs slightly compressed due to "weight")
- Lung capacity test (okay..doc said due to weight)

Early/mid May:
-Internal tremors continue
-Pressure of head, nose, sinus area
-Twitching continued (no weakness yet however)
-Back pain
- Felt a loss of control of right leg for awile
- Xray showed C3-C5 forminal stenosis
- L5-S1 Degenerative Disc Disease.
- Electrical zaps in head- felt like the left side of head was splitting for the right side.
- Involuntary musle jerking ( right leg)
- Went to Sunnybrook ER for second opinion (according to them No forminal stenosis of cervical spine. Early sign of Disc degeneration in lumbar spine. I'm pretty sure is due to weight.
- Electric shock type shock through right leg. Had to dragged my leg around 1 night. That went away. Happened twice.
- Pulsating type feeling up right leg to knee.


Late May:
-Frequent headaches( from moderate to severe to cluster to complex) you name it, I had it.
-Internal tremors continue
- Feeling like a can't breath.
- Sometimes I can't breath laying on back or side.
- Stiffness in right calf
- CT scan of brain normal
- Twitching now spreads to stomach and back
- numbness of left arm (went away)
-Off balanced
- Fingers in left hand shaking
-Heart palpatations


Early June:
-Muscle aching
-Feeling unable to breathe
-Twitching continues (of course)
- Reoccuing palpable lymph node on back of neck
- Spasms and charlie horses on right leg in the morning
- Small twitching I can't feel seen on right calf
- Tingling of face (mainly on left side)
- Feeling off balanced
- numbness of left arm (went away)
- Dizziness

Mid June to Now:
- EMG said to be normal (have not recieved report)
- Twitching now on almost every part of body (arms, legs, calf, shoulder blades, tongue, face, kneecaps, lips,butt..even up my nose.
- Cramp of hands
- Pain in left hand
- Slighty atrophy in hand (could be in my head though)
- Dizzness. especially when sitting down
- Tingling of scalp and face. (very debiliating and disconcerting)
- Loss of appetite.
- Dirreaha (you really didn't need to know that I'm sorry) probably due to Natural Calm and that awesome time of the month!
- Swollen lymph node right side of neck.
- Fingers in left hand continue to shake.
- Feeling a loss of control in entire left arm
- slight pain in entire left arm.


I'm scared I might have some neurological problems. It started with a virus and progressed from there. I've been on boards for both ALS, MS and Lymes. Most saying i don't have it. I'm 22 years old and I'm scared I might die. I can't live like this anymore. I've been to at least 10 doctors. None of have helped me

 
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Old 06-28-2011, 05:10 PM   #2
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Re: I'm back. progressed a bit. Need some advice

ALS has weakness involved. Symptoms don't come and go. USUALLY...the twitching starts after major muscle loss. Weight loss is markable. Yes this sounds neurological but doesn't scream ALS especially if your EMG is ok.

Definitely keep journaling, it helps you and your doctors. Good luck

 
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Old 07-03-2011, 10:48 PM   #3
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Atsugi HB User
Re: I'm back. progressed a bit. Need some advice

Good news. The EMG ruled out ALS.
None of your symptoms sound like ALS.

Bad news (which you already knew): Every bit of your described symptoms are directly or indirectly caused by obesity.

Fortunately, obesity, no matter what caused it, is always totally reversible.

 
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Old 08-27-2011, 12:08 PM   #4
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FastUno HB UserFastUno HB User
Re: I'm back. progressed a bit. Need some advice

Obesity, how silly.

You HAVE Lyme, listen to the previous posts. Also read book called Cure Unknown by Weintraub.

 
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Old 08-27-2011, 12:43 PM   #5
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Re: I'm back. progressed a bit. Need some advice

I would do my best to get to HOuston to see Dr. Stanley Appell. If anybody can diagnose ALS he can. The twitching you continually mention, particularly even up your nose, is often anm indicator of ALS. My husband was diagnosed with ALS in 2004. One of the first things the neurologist looked at, even though he had muscle twitching(fasiculations)from tiny to looking like snakes under his skin, all over hius upper torso amd beginning in his calves--the neurologist wanted to see his tongue and up his nose. He did have them there. We hadn't noticed. He did the obligatory tests to rulw out Lyme's, etc.--then sent us to Dr. Appell. He's supposedly one of the best--if not THE best-in the world at diagnoseing. Look him up on the internet. It should give you cointact info for his dianostic clinic. At his clinic we did see people your age and younger there. I am not trying to scare you--but it seems as if no one is listening to you and truly considering this as a diagnosis because you don't 'fit' the usual criteria. I think you deserve --good or bad--to be heard and get a proper diagnosis. I pray it's not ALS--but if it is--there's lots of support out there and believe me--knowing is infnitely better than not knowing.

 
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Old 08-27-2011, 01:30 PM   #6
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DeniseA HB UserDeniseA HB User
Re: I'm back. progressed a bit. Need some advice

lol yeah, I don't believe that ALL my symptoms have to do with me being overweight. but I don't think that it helps. I had an EMG done back in June and it came back negative. Results were "unremarkable." Lyme test came back negative as well. However, i did test positive for H pylori. I stomach bacteria that can cause a wide range of symptoms. I took a 7 day intense treatment for it. I actually feel worse. I'm getting retested for it on Monday. I don't know. I could be something else that is causing my problems and they just so happened to find the H Pylori, cause I don't feel much better. I had a brain MRI (without contrast) done. It came back normal. So, MS is taken off the table.

 
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Old 08-30-2011, 11:16 AM   #7
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FastUno HB UserFastUno HB User
Re: I'm back. progressed a bit. Need some advice

Check out Dr Dave Martz's story on ALS, do a search for "Dave Martz ALS"

 
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Old 08-30-2011, 11:23 AM   #8
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DeniseA HB UserDeniseA HB User
Re: I'm back. progressed a bit. Need some advice

Why though? I don't have ALS. Thank goodness.

 
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Old 09-01-2011, 05:17 AM   #9
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Re: I'm back. progressed a bit. Need some advice

He was dx with ALS but received treatment for LYME. Now he has improved significantly. It appears that your LYME test must come from certain labs.

Lyme is possible. I have a friend who insisted it was lyme when I was have neurologicall problems. For me, I was dx with MS. My friend still thinks I have lyme. The Lyme's diesease believers are VERY passionate about it. It's a misunderstood disease, testing gives many false answers (both ways).

As to ALS. I doubt it, but I would repeat an EMG in 6 mos to a year. I have heard of a clean test then on the next test problems were picked up or have progressed. Same with MS. It may not be detectable on a first MRI. When they do the MRI make sure it is ordered with and with/out contrast. Repeat that test in 6 months. Also, MS lesions can be found in the cervical scan so I would do that also.

Keep journally...see a internist...stick with neurological. Good Luck finding some answers...don't let anyone tell you you are crazy

 
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Old 10-16-2011, 06:42 PM   #10
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Re: I'm back. progressed a bit. Need some advice

Hi DeniseA, how are you doing now? I feel like you're my twin with all of your symptoms.
I've been going through EVERYTHING you have, since around mid-July. I'm so tired of all thi pain. Like you, I have yet to receive a diagnosis.

How are you feeling now? Any updates?

Were you on any prescribed medications on or around the time your symptoms began?

 
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