Scared this is ALS, or is the Autoimmune, What else could it be?

[Luke 339]

Started with some vertigo and me getting sick Nov 29th 2005. I just landed the day before from Hawaii (Kauai to be exact). Was up for at least 3 hours with this condition. Went to docs next day, they did a balance test on me said i was ok. A week later experienced an internal shaking, like muslce twitching on the left side of my chest (was not my heart). Went to ER in the morning, chest x-ray was done and doc said its prob pneumonia, gave me 7 days of biaxin sent me on my way. Felt better after bought of asthma.
Saturday 24th of december woke up with clogged left ear. Got on airplane back east to visit fam and had to pressurize my left ear like crazy. Finally heat started radiating from my ear which quickly spread to my left eye. left eye felt swullen and was radiating heat but if you look into mirror eye was not swullen. Landed with the same feeling and also started to feel dizzy and fatigued. The next day (Christmas) felt even more fatigued with the swullen eye and ear clgged went to ER. CT scan was clear had horizontal nastagmus. Doc said i needed MRI with contrast if symptoms got worse. Said it could wait till i got back to LA unless it got worse.
Kept on with my week feeling very tired, dizzy, eye swullen feeling at least, nothing changed. Tuesday night around 2:30 AM had some sort of buring in the left side of my head and neck, super pain, like buring and electricity at the same time. Lasted for a couple of hours. At that point i did not know what happened, maybe stroke who knows went to another ER where got MRI with contrast done. Neurologist said it might be artery in back left neck torn or ocluded. Sent me to Columbia by ambulance, stroke ward.
There I got another MRI, MRA, Heart Doplers, Neck Doplers and a lumbar punture. They used blood thinners early on but stopped then about 6 hours before lumbar punture. At the end of all this testing they said they had no idea what caused my problem, no signs of MS or any other other bad times disease.
Went back to doc they ran me for hyperthryroid, all infectious diseases (Aids, Hep B and c, Syphilius), Mystinius Gravis, Rhematoid factor, CPK, Magnesium all negative. Did MRI of neck and spine with contrast all normal, no injuries, impingements, no swelling spine and neck look normal and healthy (nerves and muscles). Neuro did EMG and NCS about 3 weeks ago, completely normal.
Pain burning and neck stiffness changed to weakness in my left shoulder,neck and leg (not physical weakness the feeling of weakness). Strange buzzing like feeling under skin and electricity feeling flowing down my left leg. Right now my left shoulder is weak, left leg weak, fatigue is high, lower back pain, pain on the left side of abdomen. the weakness in my neck went away and now its just weakness in my leg and shoulder. Trouble swallowing (feels like something is in my throat).
What could this be, Neurologist says no to ALS, MS ruled out, what causes one sided weakness like this? Could it be Lyme I am from CT.

[WikiHealth girl]

still no dignosis? it sounds like you have been checked for thyroid stuff... however, have they also checked for Graves-Basedow disease?  
see this article on WikiHealth.com: http://www.wikihealth.com/Graves-Basedow_disease

i know someone who had very similar symptoms as they one you explain and it took them 8-9 months to diagnose her with Graves Disease.

[Luke 339]

Actually I have not been diagnoised with Lyme Disease yet, my actual Lyme Doctor is not convinced its Lyme yet so he has taken me off abx. He said he needs to see MRI films and stuff from other hospitals before he continues to treat me. He also stated that he does believe in more then one abx at a time.

First LLMD I saw lost my blood test and the second one refuses to treat me due to not seeing MRI stuff yet. He said from my symptoms he is not convinced that I have Lyme Disease although I am from East Lyme, CT, i grew up there most of my life. All I can say is I am loosing muscles on left side of neck,, having a very hard time swallowing, tongue is weak and gets taxed the longer i talk, my left should is weak also feels like my muscles are jello. I dont know what it is yet but head of neurology at keiser does not think ALS, just had MS study MRI done Two sundays ago and it was all clear.

I dont know what to think anymore. No doc wants to support any of my symptoms.

[Carol in PA]

To those of you who are wondering about Luke, he has been posting at the discussion group at LymeNet.org, and was diagnosed with Lyme Disease.

Carol

[ShellyWu]

It doesn't sound like Lou Gerig's disease to me.

Shelly

[Sparkie24]

I have MS and my legs, they get all tingling feeling and hurts sometimes. I can't walk on them, I use a wheelchair when I go out somewhere and I use a walker around the house. I was wondering if there was some kind of surgery or medicine that would help them. I can't get nothing out of my neurologist. Help me please. Valerie

[myproblem]

Lupus can cause all of what you've described. It has been linked to neurological disturbances, including psychotic episodes. Scleroderma, which is referred to as a cousin to Lupus, could also be possible. Although the psychosis doesn't fit, his skin being sore or tender sounds like scleroderma. Mixed Connective Tissue Disease (MCTD) is a mixture of autoimmune diseases, particularly Lupus and Scleroderma. As for the Naprosyn, there is a "coated" version of it that minimizes the stomach upset, and there are also some medications that can be taken with it to minimize stomach upset. This would be important to discuss with the rheumatologist. Sometimes Dr.'s don't want to say too much until they are 100% sure of a diagnosis. Lupus and other autoimmune diseases can be hard to diagnose, and a lot of other stuff usually needs to be ruled out. In this case, the high ANA, and SED-rate are pretty strong indicators toward autoimmune disease. Here are some links to describe the different illnesses. Some of the information may seem scary, but don't despair. Most of the symptoms are treatable, and there are medications to slow the progres of these disorders. A short course (maybe 2 weeks)of prednisone may help a lot. Try to stay away from long term prednisone use unless it's your only option. It can have a lot of negative side effects when used long term. Any more questions, please post again. Good luck.

http://hometown.aol.com/lindartc/index.htm#what

http://dermnetnz.org/immune/cutaneous-lupus.html

http://www.niams.nih.gov/hi/topics/scleroderma/scleroderma.htm

http://www.sclero.org/medical/about-sd/a-to-z.html

http://www.sclero.org/medical/symptoms/associated/a-to-z.html

This is the UK site, but I like it better than the US Lupus Foundation Site.
http://www.uklupus.co.uk/

This site has images of different skin conditions. You can look up Lupus, and Scleroderma to see if it looks familiar. http://dermatlas.med.jhmi.edu/derm/

[LEXII]

I HAVE A 10 YEAR OLD SON WHO ALSO HAS BEEN SICK SINCE EARLY NOV. IT STARTED OUT LIKE MONO, HE WAS EXTREMELY TIRED, NEEDED TO SLEEP ALL DAY AND NIGHT. HE HAD RAPID WEIGHT LOSE (11 LBS IS 3 WEEKS) TERRIBLE HEADACHES, JOINT PAIN IN BOTH ARMS FROM SHOULDER DOWN. BU WEEK THREE HE WAS UNABLE TO USE HIS ARMS, THIS LASTED FOR OVER 2 MONTHS. HE ALSO SUFFERED FROM MOUTH SOARS, SKIN BLISTERS, CHEST PAIN, DIZZY HE LOOKS TERRIBLE. HE WAS A NORMAL HEALTHY, AND VERY ACTIVE CHILD PRIOR TO THIS.
WE HAVE SEEN MANY DOCTORS, BUT HAVE LITTLE ANSWERS. HERE'S WHAT WE KNOW.
HE HAS HIGH ANA LEVELS, ESR LEVELS ARE ELEVATED, BONE SCAN WAS NORMAL AS WELL AS NORMAL CT SCAN, HE IS BEING TREATED BY BOTH A RRHUMITOLOGIST AND NEUROLOGIST AND WILL HAVE A MRI THIS WEEK.
AT THIS POINT HE HAS REGAINED THE USE OF HIS ARMS WITH THE HELP OF NAPROXIN (WHICH CAUSED HIS STOMACH TO BLEED) HE HAS RECOVERD FROM A STREP THEY DISCOVERED IN HIS BLOOD. HE STILL SUFFERS FROM THE CHEST PAIN, SEVER HEADACHE, JOINT PAIN, DOSEN'T WANT TO EAT, STILL TIRED, HAS THESE PAINS HE CALLS SHOCKS IN HIS HEAD, HE SAYS IT'S LIKE HE IS BEING ZAPPED. HIS SKIN STILL GETS RASHS AND HE SEEMS TO BE SENSITIVE TO TOUCH, HIS SKIN HURTS, HE SEEMS TO FEEL PAIN MORE INTENSE THEN PRIOR. HE ALSO SUFFERS NOW FROM MANIC PHASES. IT HAPPENS DAILY, HE'S SCARED OF MY HUSBAND AND I, HIS SURROUNDING, HE BECOME UNAWARE OF WHAT'S GOING ON AROUND HIM, IT'S DEVASTATING TO WATCH.
NO DOCTORS WILL TELL ME WHAT THEY THINK. THEY HAVE RULED OUT CANCER, THE ONLY OTHER SUGGESTION MADE HAS BEEN LUPUS. BUT I CAN'T GET ANY STRAIGHT ANSWERS.
ANY SUGGESTIONS ON WHAT THEY MAY BE LOOKING FOR? I DEAL BETTER WHEN I HAVE AN IDEA OF WHAT I AM FACING. THE ONLY ANSWERS I GET IS THAT WE WILL DO MORE TEST AND WAIT AND SEE.
COULD THIS BE THAT THEY HAVE NO IDEA, OR THEY JUST DON'T WANT TO SAY.
ANY ADVISE?
HELP IF YOU CAN
THANKS

[myproblem]

I was looking for something else, and stumbled upon this.
http://www.cidpusa.org/
As I read the symptoms, it sounded so much like what you described. I thought of you right away. Hope it helps.

[Luke 339]

Actually I do have some visible muscle wasting, me left neck and face seem to be thinner then the right now. Now I am scared.

[atrueoriginall]

I hope he's not having to foot the bill for any of that.  I would like to hope that you would first try something as simple as a diet change in respect to MCS (Multiple Chemical Sensitivies).  Most all of your symptoms are indicative of excitotoxins.  I would suggest you eat whole foods, (meats, fruits, vegetables) not drink alcohol or caffein and DO NOT eat out whatsoever (not even once while you're testing).  At least try it for about a month while everyone else is testing you to death.

[Luke 339]

Yes I have good muslce tone but feel they get exhausted very easily.

[Luke 339]

Doctor,

I have had my rheumatoid factor done and it was negative for anything like that. What is ANA? I have also had genetic testing done to see if i had the defective gene that causes these muscle disorders and that was negative also. There is no visible muscle wasting, is there pain with ALS at all?

[myproblem]

ALS, from what I know about it is not a painful condition. You will get muscle weakness but I think it's more of wasting, not just fatigue. You may also experience jerky movements with ALS. ANA is one of the major tests for Lupus, and is also used for some other autoimmune diseases. I get muscle fatigue too as a result of Lupus and Scleroderma. It is hard for me because I have always had very strong muscles, and have been able to lift a lot of weight. Now if I lift anything heavy, I fell like my muscles are all useless and sometimes shaky afterward. I can't carry heavy loads of groceries in the house because my legs won't go up the 4 steps to my house with the added weight. Just a few years ago, I could lift more than twice my weight with my legs at the gym. If I work out, then my muscles shake afterward, and I have to sit down. I have also "internal shaking" like as if my internal muscles were shaking with exhaustion. I have attributed this to my heart (I have mitral valve prolapse), but don't know if this is really right.

[Kevin Pho, MD]

You have had a very comprehensive evaluation that would rule out most of the major diseases.

Further evaluation can be done with magnetic resonance spectroscopy (MRS).  If this tests continue to be negative, I would say that ALS is very unlikely.  

You can look at various types of muscle disorders - such as myositis - muscle enzymes as well as an aldolase level can be considered.  Admittedly your symptoms would be an unlikely presentation of any type of specific muscle disorder.

Regarding rheumatological diseases, blood tests looking at the ANA and rheumatoid factor would be reasonable initial tests looking at this.

A referral to a rheumatologist or another neurological opinion (preferably at a major academic medical center) can be considered.

Regarding the trouble swallowing, a barium swallow and/or an upper endoscopy can be considered.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[myproblem]

Did they ever decide if you had a stroke? or was it inconclusive? Would you describe the muscle weakness as if your muscles just feel too exhausted to do anything although you have good muscle tone?