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could this be ALS?

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Old 01-10-2015, 02:25 PM   #1
mohsenali1983
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Default could this be ALS?

First of all i want to thank the community for helping people like us who have questions. I know its not easy as some of you can't speak,type etc,,

1-my 3 big concerns are feeling weakness in my joints. Like when i walked the one mile sometimes i would get off path a little. Is it normal to not go 100% in straight line when walking or jogging?

2-and my throat with food getting stuck. Or atleast that's the way i feel

3-Also when i am talking, sometimes i just don't know what to say and i have to stop think about what i was saying and than talk. I just started noticing that today. Its like i am talking and all of the sudden i have to stop or i forgot what i was talking about. Or don't know what to say next. Its like words might be coming out a little harder

I went to see a Neurologist on friday here are the test she did

1-She had some sort of a vibrator and she put them on my ankles,kness/joints and elbows and asked me to tell her when i stop feeling the Vibration

2-She hit me with a small hammer on my knees,ankles,elbows etc, i didn't notice much but i did notice my left knee jerked a little.

3-She did not notice any muscle weakness(she was a tiny women so not sure how much pressure could she really put on me)
4-she didn't notice any Atrophy

5-She didn't notice any twitching
6-she did my eyes exam and made my follow her finger with my eyes

7- she made me walk on my toes, but i wasn't balanced a little(is it normal to not go straight when walking on toes?

8-She did the same asked me to walk on my heels and there i could go a bit straight with more balance

9-she asked me to stand on toes and that was hard
10-she made me stand on my heels which was impossible, i could stand on heels but had no balance

she made me walk in a straight line with me feet one after the other and that was kind of hard. I can walk but going 100% straight wasn't easy

She told me she don't think its ALS. She said i scored 21 on my Anxiety test which is high. She did schedule a EMG for monday(yes quick service)
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Here are some questions i have for community:

1- how does clinical weakness start? do you just one day wake up and can't lift your foot or can't use your leg? or does it start overtime of feeling weak in feet or leg? For me personally i am feeling quite weak in my knee and joints on my legs. I just walked about a mile and half a feel a little better

my left thigh is twitching on and off
my left foot is tingling/twitching on and off

2- this has me really worried and i forgot to ask the doctor(she did check my tongue though)

I feel like my face,cheeks and area around my chin is stiff/numb
I feel like i have trouble swallowing, i feel like when i am eating something there is some piece of whatever i am eating that gets stuck. But in reality i don't think anything is getting stuck. Like if i notice something or feeling of something stuck i drink water and feel better

sometimes i feel like there maybe a LUMP inside

3-sometimes my left hand starts to twitch and my right hand has tingling feeling. But nothing is permanent. it comes and goes

MY EMG is schedule for lower body both legs and one arm. Should i also do it on the other arm just for peace of mind?

also during EMG can they check out the throat area through emg test?


I read online that a lot of these could be stress related or anxiety related?

Any replies and feedback will be appreciated and i want to say Thank you and God bless in Advance

Thank you and i hope there is a cure for this very very very soon
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Old 03-18-2015, 09:47 PM   #2
mohsenali1983
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Default Worried about ALS or Bulbar please read this, Thanks

My issues started on January 3rd 2015, And here are the Symptoms:

1- My face, mouth and jaw gets stiff and tight for hours. Lay downing helps sometimes. when i am talking, sometimes i just don't know what to say and i have to stop think about what i was saying and than talk. Its like i am talking and all of the sudden i have to stop or i forgot what i was talking about. Or don't know what to say next. Its like words might be coming out a little harder or Harder to pronounce. Sometimes I notice I my face is trembling/shaking

2- My tongue has this buzzy sensation, its not twitching. Maybe more like ZAPS. Sometimes i feel like my tongue is growing in size. This way i will bring my tongue out of my mouth to see if its bigger or smaller and i try to check the movement of the tongue. My tongue feels Sore or weird. I am biting my Tongue more often, and it feels soar and has a lot of cuts on it.

3- My hands feel clumsy especially right hand and sometimes I get pain and cramps, other times it moves to left hand. sometimes this same, cramps feeling happens to my palms or wrists. Hands/fingers feel stiff and clumsy. When I am typing on keyboard i type a lot of words wrong only to hit back space and do it again, I am starting to notice this happening more and more. This clumsy/stiffness feeling just feels weird. Both my hands are Trembling and Shaking a lot sometimes

4-- I get random twitches throughout the day on different parts of my body. Sometimes its thighs,joints,calf,triceps,lips,tongue,under my jaw around throat. These twitches are real and easy to feel and see but are not persistent, so it can last for 2 minutes or 2 hours

5- I notice that the tongue makes more saliva or maybe I am focusing too much on it, but even when i don't focus on it sometimes it still makes too much saliva IMO. I am always swallowing or trying to swallow it or spit it out. I am saying words wrong and biting my tongue and inside of my cheeks a lot, And overall my swallowing doesn't feel normal


6- Sometimes Back of my head hurts, also while hurting it feels stiffness and tightness, this same feeling goes to mouth,jaw,neck and throat area

7- Feeling weakness in Legs, Joints, Arms, and pain in both legs numbness and tingling feeling in my feet, burning sensation in my feet, than at other times my feet felt so cold and numb especially around Toes. Cramps in Feet, legs, Calf and both hands

I am really worried about Bulbar Onset
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Lap work done

Clean EMG of both arms and legs. By spots i mean how many different area the needle was inserted in. The Neurologist who did the EMG has 46 years of Neurologist experience but he isn't ALS specialist. but he said he has done enough and seen enough cases of als during EMG and otherwise

4 spots on right legs
3 spots on left leg
3 spots on right arm and
5 spots on left arm

None was done around Bulbar region.

A Barium Swallow test was done and ENT said it was normal

She also put a Camera through nose to check back of throat and that was normal too. She said i have LPR(Laryngopharyngeal Reflux) Symptoms for LPR are very similar to ALS swallowing issues or bulbar issues

Symptoms of LPR from WebMD:
With LPR, adults may have heartburn or a bitter taste or burning sensation in the back of the throat. But they are less likely to have such classic signs of GERD. More often, symptoms in adults are vague and may be easily confused with other problems. The most common symptoms include:
Excessive throat clearing
Persistent cough
Hoarseness
A "lump" in the throat that doesn't go away with repeated swallowing
Other symptoms may include:
A sensation of postnasal drip or excess throat mucus
Trouble swallowing
Trouble breathing
Sore throat


Other blood work:

Vitamin D was 11.3(normal range being between 30-80)
my Vitamin B12 was 218(200-900 being normal range)
A1C(blood sugar test) 6.0(normal range is 5 to 6.4
wbc 12.3(normal 4-10.5)
RDW 16.1 H(11.5-14 normal)
segmented % 76.6 H (42-74 normal)
segmented # 9.4H(1.70-6.70 normal)
monocytes% 4.2L(4.50-12.30 normal)
bilirubin, total 1.5H(0.3-1.0 normal)
GGT(GGTP)71H(9-64 normal)
LDH 116L(140-271 normal)
(FT4 INDEX)CALE 5.1h (1.1-4.6 NORMAL)
TSH 3RD GENERATION 6.520h(.0340-5.600 NORMAL)
VITAMIN D25 HYDROXY 11.3L(30-100 NORMAL)

In total i have seen enough doctors for a lifetime

4 Neurologists in New orleans and 1 with 50 plus years of experience and his specialty was bells pasly other with 46 years of experience and 2 other in 20 plus years of experience

2 neurologists in Pakistan
1 Neurosurgeon in Pakistan(even though it wasn't his field he still did a minor physical of bulbar region and said everything is good)

4 ENT's but only one of them i saw for ALS, and she is the one who did the swallow test and put camera through nose among with physical examination

one GI doctor and been to Er twice

seen my PCP twice for als fears and once for swallowing issues

Each and everyone of them said its anxiety and prescribed medicine
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most of you read will think what can we say to convince you that the doctors who have been trained to figure this stuff out hasn't been able to do


so any feedback will be appreciated

Thanks, i recently got married on october 18th, 2014 and thought of leaving my wife has me so scared

what do you guys think?
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Old 10-05-2015, 11:54 PM   #3
Tb12
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Default

Hey there,

Any more updates on your journey? We have very similar experiences.. Would love to hear a update?
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Old 10-06-2015, 07:05 AM   #4
mrsD
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Quote:
Originally Posted by mohsenali1983 View Post

Vitamin D was 11.3(normal range being between 30-80)
my Vitamin B12 was 218(200-900 being normal range)
A1C(blood sugar test) 6.0(normal range is 5 to 6.4
wbc 12.3(normal 4-10.5)
RDW 16.1 H(11.5-14 normal)
segmented % 76.6 H (42-74 normal)
segmented # 9.4H(1.70-6.70 normal)
monocytes% 4.2L(4.50-12.30 normal)
bilirubin, total 1.5H(0.3-1.0 normal)
GGT(GGTP)71H(9-64 normal)
LDH 116L(140-271 normal)
(FT4 INDEX)CALE 5.1h (1.1-4.6 NORMAL)
TSH 3RD GENERATION 6.520h(.0340-5.600 NORMAL)
VITAMIN D25 HYDROXY 11.3L(30-100 NORMAL)

In total i have seen enough doctors for a lifetime
Welcome to NeuroTalk:

I see some problems with your blood work.
Your B12 is very low. That range is over a decade outdated and has not been updated to the new low of 400pg/ml.(US units)
Was your result done in Pakistan? If so they may be using different concentrations to report.

Your TSH is high, and suggests hypothyroid issues.
Your A1C suggests you are on the way to insulin resistance and perhaps Type II diabetes.

Your white counts are a bit high too, suggesting a low grade infection.

Here is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

I would start taking oral B12, in its activated form, ASAP.... 5mg of methylcobalamin on an empty stomach. Get retested in about 3 months, and if you are at 1000 or above, you can reduce to 1mg daily, to maintain. Stop any B12 supplements a week before testing or your result may be falsely high.

Low B12 causes balance problems and other neurological signs often before anemia becomes present. It may show as an elevated or very high normal MCV in the blood work as a flag to investigate.

Low B12 can come from a mutation called MTHFR (10-30% of adults may have this), use of some drugs (metformin and acid reducers), autoimmune disease (damage to intrinsic factor in the stomach), or diet (Veganism).

People with the MTHFR mutations who have one gene that methylates, manifest their low B12 later in life.

Hypothyroid patients may have an enlarged tongue. Burning mouth and tongue are often signs of low B12.
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