als fear

[klag]

for a doctor to respond. I know you cant diagnos me but here is my story. In 1994 i began with diplopia and dizzy spells on and off. i used to also get bad hamstring cramps on and off. Then in 2003 the diplopia stayed. went to opthamology and they could not figure it out. did blood test for MG and tried 3 weeks of mestinon, did not work. had brain mri clear. In 2004 was in accident (rear end)right foot was in pain. foot dr said planter facisits and gave me foot arch supports. after that i started noticing cramping upon excersion in shoulders and arms on and off. then on sept 15 2005 the fasiculations started, first emg/nvc clear, 2nd emg /nvc occational fasc. i had lost 35lbs at this point lots to do with stress. finally my left foot and calf started to shrink as well as my left hand and forarm, lat etc. i went and had a muscle biopsy by my new neurologist , no answers yet. just had an emg in left ulnar side of hand, between left thumb and finger, left forearme,left shoulder,left calf. remarkabley no pos waves, no fibs,duration normal,amplitude normal,polyphasic none,configuration normal, recruitment normal, nvc normal, f wave peroneal .L normal. My new neuro said that this was to long for als but he is accounting the diplopia and old cramps with this. i have noted weakness in my left hand and am atrophing.my swallowing started bothering my 4 months ago and tongue with fassicultions and had emg in tounge again nothing. original diagnosis was BFS. still get diplopia and dizzy spells. had electrical shock down left body like stroke. your thoughts please. 13 months no answers

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   The story and symptoms that you describe are complex and there is much data that I do not have.  I was most concerned about myasthenia gravis(MG) from the story you described.  MG causes diplopia (double vision), weakness that is worse at the end of the day and can also be assocaited with bulbar dysfunction (problems swallowing, changes in speech, drooling etc).  MG diagnosis is often looked for by antibody tests including binding, blocking or modulating antibodies, but there is also sero-negative MG.  I would also suggest a special EMG called single fiber EMG with repetitive nerve stimulation to evaluate for MG.  A trial of mestinon is not sufficient since some MG cases require plasma-pheresis etc before responding.  You have multiple other symtoms that do not seem to fit a specific pattern (weakness and atrophy with normal EMG; stroke like symptoms with normal EMG) that I am unable to comment on without knowing more about the case.  I think the muscle biopsy is a good idea.  I would also suggest that you be evaluated by a neurologist that specializes in ALS given the complex nature of your case.  
I hope this has been helpful.

[klag]

I had fogot some stuff,.the fasiculations used to be all over then they would swtich sides left then right. they moved my toes and fingers, i'v had them even jerk my shoulders like im shrugging my shoulders. they have now primarly settled in left side again. if i squeeze my left hand it twitches in fingers and hand. the left ulnar side of hand cramps some time for no reason even at rest(think its called berevis palmerus)side of hand pushes in. My hands for the last 5 months when i wake up are numb(like no feeling) on pinky and ring and middle finger. hands go numb easy. my left foot lost sensation like it had novacane injected in it on the outside for 3 weeks. mouth and tongue went numb for about 10-20min on and off, both sides of stomach have gone numb on and off. my hands look reddish with blotchy white spots when in a down position, gp said circulation and a intern freaked out asking what is wrong with my hands while doing neuro strenght tests because of that coloration.my left bicept has had ongoing burning pain for a long time like its on fire. travelling stabbing pains,jabbing pains in rib cage,used to get breathing fits with rapid heart beats, same fits would wake me up just as i would fall asleep.sleep test level 1 ok. have heart murmer. liver counts elevated on/off. ck levels 90,96,75,76,after excersice 138. urine has on occation been dark brown. urine test ok next day. new neuro mentioned might be a mitochondrial disease and stated in report could be a myopathy of yet known origin.some times my muscles on left side feel as if they have a tickling sensation in then rather than tingling.also all of my jionts really crack and pop. all blood work ok. thank you in advance for response.

[klag]

sorry i dont want to forget anything. i used to get this feeling in my left leg kind of like all my blood was pooling in my leg starting at my foot and moving upwards. it felt like it was being constricted or something and was painfull. i also had that band type feeling around my stomach and back also like someone was tightening a belt around me. its a weird coincedence to me that the stroke like feeling hittig my left side where all of the atrophy is happening. the weird thing is everything started in my right side. when i open a door knob it felt like i couldnt close my hand,if i wrote my right hand would seize up then that all went away. after 13 months cant figure this out. now i found a new dent behind my left elbow. but i can still arm curl 60 lbs (2arms), i have been benchpressing 95lbs 5 sets of 10=50 x 2=100 then a last set of 3x 10 grand total of 130 reps. although my left arm gets way more tired and hurt all the way down the ulnar side like one big long tendon stretching pain. also i will some times get electrical shock feelings travelling from bicep to fingers upon flexing muscle, very painfull. my left foot feels like i walk on bone now. i can still stand in toes and raise them up and walk on heels,but left one hurts. its like i am losing all the fat padding in foot and hand.

[klag]

sorry reflexes are also brisk. no response on babinski not up going or down going. an old neuro report from 97 said reflexes normal and down going symmetrical planter respose. so that has changed. at that time no emg was done as i guess i was complaining of twitching but could not see them and they went away and had no mass changes (1997). the eye surgen said he would not operate as my vision keeps changing and opthamologist said eye muscle weekness affecting part of 3rd crainial nerve which is confuseing but not uncommonn for something like MG to do. blood tests clear for antibodies standard test. ct clear of lower lumbar region, chest x-ray clear no paraplastic although cbc elevated at times. also said to have fatty liver after ultrasound. also had stomach checked as had IBS on off over the years. what is your take on all of this. NO LP yet, had lymes test neg, not spinal MRi with contrast yet.

[NickyCouture]

Hello. I'm sorry that I'm posting a new question on this forum, but I'm very desperate and need help. I am a 20 year old female and for the past 2 months, I've been experiecing difficulty breathing. It's as if I have this constant need to take a deep breath of air, which sometimes I cannot do. I'm also feeling dizzy 90% of the time. My symptoms get really bad at night, and I have had trouble sleeping. When I try to fall asleep, I have to constantly keep shaking my leg or something. I just can't stay still. I'm constantly coughing and sometimes develop severe chest pains. The dizzyness is also accompanied by extreme headaches. This morning when I woke up, I have what feels like a small ball on the right side of my throat. I've been to the hospital and doctor many times and they both have the same explanation for my sickness: anxiety. I had both blood work and urine tests done and both came back to be normal. While I do admit that I am a very anxious person, I don't understand why I'm constantly feeling dizzy all the time. This air hunger that I'm experiencing is really driving me crazy. Again, I'm sorry for posting a new question, but this is really affecting my life. Any suggestions you can give me would be greatly appreciated.

[klag]

nick your posting a post on top of mine. yopu need to go to the forum. thanks klag

[johnflox]

The description of ALL your symptoms could well have been written by my brother. In his case all is due to a drug reaction that started insidiously after completing the treatment and was increasing for a long time until it reached its peak. It was discovered after a few more rechallenges with the drug that only worsened his symptoms.
Have you excluded a drug intoxication. Have you taken in the past powerful antibiotics or drugs for modifying the inmune response?
Just to rule out another case of toxicity.

[klag]

when this all started i had 2 bad ear infections and was on penacillan type antobiotics, then when the twithing started i got an ear infection same ear again and was put on a sulfer smelling type antibiotic. i also take seroquel and remeron at night for sleep. thanks for reply

[johnflox]

The group of antibiotics with the potential to cause all your symptoms include nitrofurantoin (macrobid), cipro, levaquin, avelox and all the fluoroquinolones family, but not the penicillins, as far as research knows up to now. Another very tocxic one is chloranfenicol.

[klag]

thanks for reply, but i new about floxies and phone all the pharmasies i went to and was not prescribed any but thanks anyways.

[vega1318]

have you had a brain MRI???

[vega1318]

You need to post separately.  

But you also need to see a primary care physician, not just ER docs.   You SHOULD try something for anxiety even if you don't think this is what's causing it as it surely sound like it.  Just give it a try.   Your PMD might also send you to a cardiologist or get an EKG just in case.   But you should trust the doctors and try taking something daily for anxiety and see if this helps.  You're 20 and should not be having these problems.

[mineandours]

HI. I noticed you said you tested negative for Lyme, but did you know that you can have a flaming case of it and still test negative?  You may want to revisit the issue.  It has a way of inflicting slow torture on you once it gets into the central nervous system.  Been there, done that.  It took me two years to figure it out and I saw fourteen various doctors and had lots of tests.  I have a LOT of subcutaneous tissue loss around my left clavicle/neck area from the Lyme infection. I had many of the symptoms you listed.  I'm not saying that's definitely what you have but it's worth looking into.  It is frequently overlooked by doctors and it is imperative that one see a Lyme specialist to be properly tested, diagnosed and treated. Carol. Here's a sx list:
Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain

Neurological System
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Sudden jerking of fingers or entire limbs
Pain in spinal column

General Well-being
Unexplained weight gain, loss
Extreme fatigue
Swollen glands
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well. (If it was mild, you may not even recall this.)

Eyes/Vision
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Flashing lights
Optic neuritis

Ears/Hearing
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears (tinnitus)
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)

Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Heart blockage


Psychological well-being
Mood swings, irritability, rage
Unusual depression, panic
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
TMJ – sudden onset
Sore throat, hoarseness
Loss of sense of taste
Difficulty swallowing, throat spasms

Females only:
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge

Males only:
Testicular or pelvic pain

LYME FACTS
1. You do not have to recall a bite or have gotten the target rash to have Lyme disease. Less than 50% of people with Lyme do.
2. The tick that carries Lyme is as small as the period at the end of this sentence and their nymphs are nearly microscopic. Ticks are on the move at 35ş and above. It’s a year-round problem.
3. You do not have to experience ALL of these symptoms to have Lyme disease. It is also typical for many of these symptoms to come and go or occur once and never occur again.
4. It is possible to have Lyme disease and have a negative test result. After Lyme bacteria enters your system, it tricks your immune system into no longer producing antibodies to fight it, hence, a negative test result. There are also other numerous factors that can affect the results.
5. Lyme bacteria hide in the spinal fluid, bone, tendons, muscle and nerve fibers and tissues and in many cases are not “floating” around in the bloodstream where they can be picked up on a test. It is a cousin to the syphilis bacteria and very difficult to eradicate.
6. It takes a LYME SPECIALIST to diagnose, test for and treat Lyme disease and any of its associated co-infections. To find one go to www.LymeNet.org. or www.ilads.org. Lyme specialists do not require a referral.

NOTE: Everyone may have symptoms that appear on this list; however, it does not mean he/she has Lyme disease. If one has numerous symptoms on this list and no other explanation for them, consider Lyme.

[klag]

i hope u can give me so answers or direction

[klag]

got back from neuro, muscle report says mild myopathy of type 2 fibers of unknown eitology everything else remarkable. strength tests ok, leg and foot still hurt. still thining of foot ,calf, hand ,forearm, back. wants to find me a muscle specialist, as he says there is something there but feels we are missing something in the equation.

[klag]

i had the biopsy and it said tpye 2 mild myopathy