Resolved question:
My fear of ALS doesn't go away even after seeing so many doctors. Can you pleasse advice me if i need to go for further testing
just now when i am typing my hands are shaking/trembling(more shaking) and that makes it hard to type or type wrong words. I type wrong words than back space to correct
I have seen 5 Neurologists on 8 different occasions
One did the EMG of both Arms and legs(needle EMG Clean)
My question is does something like Bulbar onset easy to diagnose by a neurologist or an ENT by doing a physical examination? What i mean by this is that there are 2 forms of Bulbar one is through slurring speech while some rare cases start with swallowing issues. So can a Neurologist tell by looking at tongue or by check jaw jerk for bulbar onset even if its swallowing issues kind ? MY bulbar region was looked at by 4 different neurologists
my last visit the doctor said that bulbar is easy to diagnose on upper reflex test so can this many neurologist miss something like this? doctors from both USA and Pakistan
can you please look through what i have posted and tell me what do you think and if you think i have something like ALS,MS or parkins to worry about?
MY CURRENT SYMPTOMS:
1-My tongue has this buzzy sensation, its not twitching. Maybe more like ZAPS. Sometimes i feel like my tomgue 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
2-Back of my head hurts, also while hurting it feels stiffness and tighness
3-I am biting my tongue a lot
4-when speaking I say words wrong and due to this I am really watchful of what I say and sometimes I speak slower just so I don't say any words wrong,
5-My hands feel clumsy especially right hand and sometimes I get pain and cramps, other times it moves to left hand. somestimes this same same,cramps feeling happens to my pals or wrists
6- I have random twitching that moves around from legs,thighs,arms etc,
7-my tongue feels sore, throughout the day i look at my tongue or move it around my mouth to check for strength. sometimes i think its become fatter or bigger
8-my face, jaw and throat areas feel really stiff
9-my hands are trembling a lot, it makes it hard for me to WRITE OR TYPE. I type a lot of wrong words because my hands are pretty much trembling/shaking
10-Also 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
11-my right hand 2 fingers the pinky and the one next to it feels stiff and clumsy(THIS CLUMSY/PAIN/CRAMPY FEELING HAS ME WORRIED BUT I HAD A CLEAN EMG 2 MONTHS AGO). This thing has been persistent for last 3 plus weeks, sometimes it becomes less
12-my left arm triceps twitches
but i feel like my fingers are stiff or numb, hard to explain more like clumsy
My joints,knees feel weak
My face is sometimes shaking or trembling. I have twitches in left side of neck/throat area. sometimes my lips are twitching
my tongue feels a buzz kind of senseation when inside my mouth
when i swallow i feel like there is a golfball in baclk of my thorat and y slivia kind of slips off it to go. just the weird feeling. And its persistent
TEST RESULTS THAT HAVE BEEN DONE:
I saw an ENT who did the swallow test which came out fine
she put camera through my nose to look and said everything looks fine but i have LPR(Laryngopharyngeal Reflux, i checked on webMD and they said swallowing issues could arise from LPR along other things
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)
VITAMIN B12 was 218(200-900 being normal range)
My symptoms of january 3rd:
my feet get burning sensation
than there are other times my feet feel cold
Sometimes i feel like my feet or toes in general are numb
my legs hurt, around my joints and lower leg and even my thighs(no cramping just pain)
my arms also hurt
my hands feel numb, more going into my fingers
my lips feel stiff and numb
outside side of my ears is also feeling numb
and sometimes i shake a lot, like my hand or leg will start shaking
January 4th:
Pain in my arms
pain in my legs, closer to joins but sometimes it moves down to calf or up to thighs
I feel tremor in my body, sometimes its my my hands where they are shaking and i can't really control it and sometimes its other part of my body, usually it goes away in a little bit
I feel tingling in my feet,toes. Sometimes my feet feel hot other times cold and chills
hand feel a bit stiff and fingers feel numb/tingling feeling
MY lips feel stiff
My shoulders hurt and weak
My arms feel pain and weak
Overall i feel weakness more
My face feels stiff around my neck, it feels numb
sometimes i feel light headed and dizzy
January 6th:
same burning/chills and tingling in feet
pain in my leg and sometimes both legs, around joints and calf but sometimes in thighs too
I had pain in arms and tingling feeling in my hands,
My hands were also shaking
I had pain and stiffness in my shoulders
I had stiffness in my face, sometimes on the face, other times around mouth and neck and even forehead
Sometimes i feel a numbness/tingling on my lip
Than some of these things went away and now i have the following:
I have weakness in my legs, especially the joints and i sometimes feel pain
my feet are tingling/numb
my neck feels stiff
my face and lips feel stiff and lips are feel numb
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January 7th:
I am feeling really weakness in my joints and i feel pain in my knees
My face,mouth and jaw gets stiff and tight for hours. Lay downing helps sometimes
I feel weak
I don't get hungry that much even after 12 hours of not eating or drinking anything
I am really uncomfortable with my Jaw and face being stiff and tight.
Submitted:
4 Days
Category:
Neurologist, Medical
Hello,
Thank you for your query at DoctorSpring.com
I have re-looked at your symptoms and investigation reports.
I would like to reassure that these are not suggestive of any serious conditions such as ALS, MS or Parkinson's disease.
Bulbar onset ALS can be picked up on clinical examination. Wasting of tongue muscles and twitching of tongue muscles are difficult to miss.
Also, movement of palate and pharyngeal muscles can be easily examined. Gag reflex and jaw jerk are also useful.
Normal EMG is also unlikley in ALS, so, you need not worry about ALS at this stage.
Vitamin D level was low and am sure you have taken the supplements.
Your symptoms can be explained on the basis of anxiety and benign fascicluations.
I hope it helps.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist
Hello and thank you for your reply, I just have few more questions to what you answered, if you have some time and don't mind answering them i would really appriciate it
Question #1:
Would Bulbar Onset be caught Via physicial examination even if its not the slurring kind but have to do with swallowing problems?
Question#2
Would Bulbar symptoms be caught on Limb EMG of both arms and legs?
Question #3:
my tongue feels weird, I still have normal movements but the endge of my tongue feels weird. Like a Zap or Buzz type senseation. I am just really worried. It feels like something is there on my tongue like a bruise but i don't see it
Question#4:
I saw an ENT who put the camera though my nose to check back of my throat, she also looked at my tongue. I also had a Swallow test where she asked me to swallow different liquids,berium pill and alka selter and while i drank/swallow she took xray. She said I have LPR(Laryngopharyngeal Reflux)
she said back of the throat looks fine/normal and so did my swallow test
so is this all in my head that i have swallow problems? also seeing like 6 different neurologists and having an EMG\, wouldn't someone have caught something like Bulbar by now?
In Your Opinion do i need to get an EMG of the tongue?
a neurologist i saw recently said that i will need a MRI of bulbar region to check for Bulbar, is he right? i thought only an EMG is needed. But he himself didn't say i need one
would a swallow test or having put a camera into my throat shown something if it was there?
You in your long career have seen cases like ALS, what is your honest opinion on this matter after seeing my reports and reading mu symptoms
Thank you again for your reply
Thank you for getting back. My replies are below:
1. Yes, physical examination would usually catch bulbar onset ALS in people with swallowing difficulty too.
2. For bulbar onset, we also do EMG of tongue and chin muscles, in addition to limb EMG. For diagnosing ALS, abnormal EMG findings should be present in at least in two regions (out of bulbar, upper and lower limbs).
3. It is not suggestive of LAS or any other serious neurological disease.
4. Yes, any abnormality would have got picked up by now. EMG of tongue and chin muscles may be done to be sure.
5. MRI of brain is usually done to exclude other causes of swallowing problems such as brain stroke or tumor.
6. As I said, I do not suspect ALS in your case. They are possibly due to anxiety and benign fasciculations.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist
Hello and thank you for your reply, I just have few more questions to what you answered, if you have some time and don't mind answering them i would really appriciate it
Question #1:
Would Bulbar Onset be caught Via physicial examination even if its not the slurring kind but have to do with swallowing problems?
Question#2
Would Bulbar symptoms be caught on Limb EMG of both arms and legs?
Question #3:
my tongue feels weird, I still have normal movements but the endge of my tongue feels weird. Like a Zap or Buzz type senseation. I am just really worried. It feels like something is there on my tongue like a bruise but i don't see it
Question#4:
I saw an ENT who put the camera though my nose to check back of my throat, she also looked at my tongue. I also had a Swallow test where she asked me to swallow different liquids,berium pill and alka selter and while i drank/swallow she took xray. She said I have LPR(Laryngopharyngeal Reflux)
she said back of the throat looks fine/normal and so did my swallow test
so is this all in my head that i have swallow problems? also seeing like 6 different neurologists and having an EMG\, wouldn't someone have caught something like Bulbar by now?
In Your Opinion do i need to get an EMG of the tongue?
a neurologist i saw recently said that i will need a MRI of bulbar region to check for Bulbar, is he right? i thought only an EMG is needed. But he himself didn't say i need one
would a swallow test or having put a camera into my throat shown something if it was there?
You in your long career have seen cases like ALS, what is your honest opinion on this matter after seeing my reports and reading mu symptoms
Thank you again for your reply
Thank you for getting back. My replies are below:
1. Yes, physical examination would usually catch bulbar onset ALS in people with swallowing difficulty too.
2. For bulbar onset, we also do EMG of tongue and chin muscles, in addition to limb EMG. For diagnosing ALS, abnormal EMG findings should be present in at least in two regions (out of bulbar, upper and lower limbs).
3. It is not suggestive of LAS or any other serious neurological disease.
4. Yes, any abnormality would have got picked up by now. EMG of tongue and chin muscles may be done to be sure.
5. MRI of brain is usually done to exclude other causes of swallowing problems such as brain stroke or tumor.
6. As I said, I do not suspect ALS in your case. They are possibly due to anxiety and benign fasciculations.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist
Hello and thank you for your reply, I just have few more questions to what you answered, if you have some time and don't mind answering them i would really appriciate it
Question #1:
Would Bulbar Onset be caught Via physicial examination even if its not the slurring kind but have to do with swallowing problems?
Question#2
Would Bulbar symptoms be caught on Limb EMG of both arms and legs?
Question #3:
my tongue feels weird, I still have normal movements but the endge of my tongue feels weird. Like a Zap or Buzz type senseation. I am just really worried. It feels like something is there on my tongue like a bruise but i don't see it
Question#4:
I saw an ENT who put the camera though my nose to check back of my throat, she also looked at my tongue. I also had a Swallow test where she asked me to swallow different liquids,berium pill and alka selter and while i drank/swallow she took xray. She said I have LPR(Laryngopharyngeal Reflux)
she said back of the throat looks fine/normal and so did my swallow test
so is this all in my head that i have swallow problems? also seeing like 6 different neurologists and having an EMG\, wouldn't someone have caught something like Bulbar by now?
In Your Opinion do i need to get an EMG of the tongue?
a neurologist i saw recently said that i will need a MRI of bulbar region to check for Bulbar, is he right? i thought only an EMG is needed. But he himself didn't say i need one
would a swallow test or having put a camera into my throat shown something if it was there?
You in your long career have seen cases like ALS, what is your honest opinion on this matter after seeing my reports and reading mu symptoms
Thank you again for your reply
Thank you for getting back. My replies are below:
1. Yes, physical examination would usually catch bulbar onset ALS in people with swallowing difficulty too.
2. For bulbar onset, we also do EMG of tongue and chin muscles, in addition to limb EMG. For diagnosing ALS, abnormal EMG findings should be present in at least in two regions (out of bulbar, upper and lower limbs).
3. It is not suggestive of LAS or any other serious neurological disease.
4. Yes, any abnormality would have got picked up by now. EMG of tongue and chin muscles may be done to be sure.
5. MRI of brain is usually done to exclude other causes of swallowing problems such as brain stroke or tumor.
6. As I said, I do not suspect ALS in your case. They are possibly due to anxiety and benign fasciculations.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist