Could it be anything other than ALS

I am so sorry about you aunt. I agree that something elae is going on but believe it is a autoimmune response response in the body from sort of damage but not ALS. I have had my symptoms for over 15 mo the now. I have reduced twitching from all over to 2 to 10 in a day still sporadic but not all over every second of the day. I had a vaccination 2 flu and pneumococcal4 weeks to prior illness while on prednisone. One doctor told me probably guillan Barre miller fisher variant from vaccine. The mercury and stuff they put in those vaccines probably with the prednisone triggered a response. Plus I am slowly improved. Went from gastricporesis orthistatic hypotension tachycardia for 4 months to getting better. I solely believe it was the vaccines. I wasnt ill prior. I was slowly feeling bad 3 weeks after the vaccines but when I fell ill I went to hospital they said virus sent me home. I thoight I was dying. I stayed home and returned to my primary who gave me three separate diagnosis meanwhile I was so ill I couldn't walk or get out of bed without assistance. I plaetued at 3 half weeks thought I was healing but fell ill again had twitching during illness but they stopped and returned when I fell ill again. The neurologist that said it was guillan Barre said there is a spectrum and I was considered mild although it was pretty bad it could have been worse. He said many just get ill think ot is was the flu and never seek help but end up with strange unexplained symptoms. Since I kept twitching al over I freaked out and looked online read what it could be and then came the anxiety. By the time I got to specialist they tried to say anxiety but was vaused by autoimmune response to virus. They wouldnt accept that the vaccines had anything to do with it. I think it did. I am pro vaccine but I know it was the reason I fell ill and went through all of this. So I refuse anymore vaccines. Not becayse I dont believe in them it is the additives I don't agree with mercury for heavens sake it can cross the blood brain barrier. They need better additives.

I commented up above a year ago when I was convinced I was dying if ALS, I have since been diagnosed with fibromyalgia.  Yours sounds like the same! 

Hi sadie85566

Do not know. I have got serious leaky gut for more than three years. So incapacity to absorb nutrients. Now muscles lost, weakness in legs + pains, muscles spasms all over body, vibrating on the left side. when I eat gluten it is worst. Did a EMG about 3 months ago which was fine. Saw rhummy she advice me vit d. Did full autoimmune profile test which is perfect except rhumatoid factor slightly raised. So I don t understand this weakness in legs and I am scared.

Hey. Sean hasnt been on this post in a longtime. I wish we knew what happened. What are your symptoms?

Hi Angela

I am experiencing muscles weakness in legs, lost of muscles in legs, muscles spasms everywhere except the face and vibration in my body.

Hi Christ321, I’ve had muscle strength loss in my right hand and forearm and muscle tremors in my calves, back and chin. Recently, I’ve had a diagnosis of roundworms and Candida/yeast overgrowth. I also have hypothyroidism. Nine months ago, I had an ALS diagnosis. So I’m trying to kill the parasites and go from there. 

I am so very sorry you were given a als diagnosis. I hope it isn't that. Build up your immune system see if it helps. Take antioxidants like alpha lipoic acid selenium vit d3 acetyl l carnitine vit e omega 3. I hope you get better. How old are you and where are you?

Have you recently been ill? You may have guillan Barre if the weakness is acute

Not really. Leaky gut is my main battle. Anyway I will book to see next month a genetic doctor for a full blood check.

I thought I was tested for Guillain-Barré but that was several months ago. There was a question about the results, but I was lead to believe It was negative at that time. I wonder if the infestation of roundworms and Candida overgrowth would produce that illness. So many questions and I’ve no GP with which to discuss these possibilities. Thank you for your response. 

I’m a 57 year old female in Texas. I take all of the suggested supplements plus 3 more to kill the parasites. I haven’t gone the heavy drug route yet, but maybe I should (for parasites). I got the initial diagnosis 10 months ago and my symptoms haven’t changed all that months. It’s almost overwhelming, to be honest. Thanks for reading and commenting. 

When did this begin and what were your first symptoms? Are you able to walk or having difficulty? Who have you tour diagnosis what place a regular neurologist or a neuromuscular neurologist? Did you get a second opinion? Did they do emg on tour muscles? Sorry so many questions. I just want to.make sure you have had everything checked.

The Symptom of an index finger twitch began in October 2016. Then I was diagnosed with frozen shoulder because I couldn’t lift my rat arm over my head. Full range of motion came back about 6 months later. Now I have morning stiffness, rt  hand weakness, and diminishing rt arm strength. I cannot run now but I can walk. I saw two regular neuros who know each other. Yes, I had EMGs at both appts and they saw additional nerve activity. 

I am doing sciences and prayers and I know everything will be alright.

I wish I knew what to say to help. I wish there was a cure. I hope you have family with you. It is strange how you had the shoulder thing but it recovered but I have read it happens. I pray you have something else. Have they tested for everything? Sent you to a university hospital for more testing. Or are they positive?

When you say morning stiffness like your muscles need to be stretched when you get out of bed? So far just your right arm is the most affected and you were diagnosed 10 months ago. Did they explain why your frozen shoulder went away? I have read once ALS begins nothing gets better and it progresses. How is your speech and swallowing? Anyone in tour family ever been diagnosed or died from a strange illness? Do you have questions? Plus how did you get roundworms? When did you see your neurologist? This is a lot but I am trying to make sure you have the right diagnosis. Did you read about ALS and do you believe that is what it is? Any atrophy visible yet? Thank you I kniw this is a very stressful time for you. Did they check you for Lyme disease?

Bless you for your prayers. God has a plan and each day is a gift for all of us.

No, they've not tested for everything. As you probably know, there's not one definitive test for ALS. And, doctors rarely admit they've made a mistake. I have my family close by and my faith to get me out of bed each day. The anxiety is debilitating, but... Thank you for your comments and healing thoughts. 

I hope you are getting some medication for the anxiety. If you feel up to it look I to clinical trials at teaching hospitals. Maybe they can help you. I have read studies of people who went into remission. Like hawking. I will keep you in my prayers.

R u in London?

There is a miracle healing rally on the 30th of June in London. If you can come. We will be healed.

No, I’m not in London but I believe that prayer is the most thing we can do. Blessings!

Angela, I have no idea how I got roundworms. Parasites contribute to all sorts of strange neuro symptoms. We travelled to Turkey and Spain about 6 weeks before I noticed the tremor in my finger. Now I have crawling/movement sensations in my calves, right arm and weakness in my rt hand. And slight twitch in my chin but it appears to diminish. I take Gabapentin 300mg and it Seems to calm my nerves down. My nutritionist says the parasites take a long time to completely leave my body. Yes, I had a western blot Lyme test several months ago but it wasn’t positive. I’ve changed my diet drastically-no gluten, no grains, no sugar, very little dairy. The drs have no explanation about why I can now put my arm behind my back or above my head.  I’m praying for healing daily and trying not to let fear dominate. Thank you for your questions. 

I will pray for you because I am going everywhere God is present for healing and I will get it. I also go to Paris where during mass there are so many healings. I promise this diagnosis they gave you will be changed in the name of Jesus.

You probably picked up the worms from somewhere in your travels.

I can only tell you to keep up hope and prayer. I was very ill 11/2016. I woke up with this enormous amount of pressure in my head and right side of my frontal lobe forehead I had confusion and nausea worse than anything I ever experienced. So my husband took me to the ER thinking I was having a stroke because my face was also numb. MRI was normal they said migraine sent me home over the next few days I got worse. Pain all over severe weakness in legs and arms I could eat from the severe nausea. Went back to ER told virus. Over the next week I laid in bed couldn't feel my legs had twitches from the waist down constantly. My had night sweats lost 20 pounds in a month. At 4 weeks I had a spell for a week I normalized I didn't get worse or better but seemed Like I may be coming out of it but it came back not as bad as the first episode. I was so weak I couldn't walk not even across a room. My husband bathed me had to dress me went to my primary many times one diagnosis after another none correct. By late January I had a emg it showed axonal damage. So I was frightened went to Mayo in Jacksonville Fl. They said they would do repeat emg. It came back normal. I had had jerking tremors uncontrolled shaking in my arms legs. My facial numbness would never go away. My lwft leg felt like someone cut the circulation off from it and it hurt so bad. I would lay awake at night and cry about the leg pain from my waist to my toes. Mayo said I had a autoimmune response to Virus and it caused my body to attack itself. That I would be okay once my body healed. In January my muscle twitches went from waist down to all over I could see them it scared me terribly. I had repeat emg June 2017 still normal at Mayo. They said the twitching was benign. I saw another neurologist in Tallahassee he told me I had sufferers Guillan Barre. He said I was textbook with symptoms. Why no one did. Lumbar puncture he couldn't understand. My gusband prayers for me constantly. I thought I was dying. Then because of all the twitching I thought I had ALS. The neuromuscular neurologist told me I did not but I couldn't believe them. I was afraid since it took 9 months to get a diagnosis they may have gotten something else wrong. I took celexa and Elavil. Celexa for anxiety Elavil for pain and to help me sleep. They work well. I had to start therapy. 7 months after the twitching started it had started to slow down. I still get some a few a day. Sometimes more depending on how tires I am but I also have periods I have none. The neuromuscular neurologist from mayo didn't want to see me anymore but I found one at Shands who see's me once every 6 months and performs a emg. He said I don't have it but he will continue to test me until I feel confident. I understand your anxiety. Even though I was lucky that my illness was sonething else I experience the fear of ALS and I know the horror of such a possiblity. I would sign up for as many clinical trials as you can find. And some people have had luck with stem cell transplant. Sont give up until every option is exhausted. Thank you for being so kind to exchange email and telling me about what has been happening. Bless you. I am catholic and I will add you to our prayer list. I dont need your name but your initials and I know you are in Texas.

Thank you, Christ321. I will pray for you at mass here, too. Did you know that “Be not afraid” is the most often repeated phrase in the Bible? God’s blessings on you all. 

Angela, God works in mysterious ways. I, too, am Catholic and I don’t believe that this is a coincidence that we all have corresponded frequently in the last 24 hours. I’m so glad you are on the road to better health. Isaiah 40:29. 

Anytime you need to talk mail me and I will respond. If you arent taking it please do the alpha lipoic acid 600mg a day and think about chelation to remove any heavy metals selenium or eat Brazil nuts. I read a study during my time of fear about someone who had all the symptims like you it was a study by the NIH. He had what they said were all the symptoms sounded just like you and he had chelation therapy and started a multi vitamin along with Alpha lipoic acid at 600mg and selenium and after a year of these he was rechecked emg changed and was good and his symptoms improved. Not saying it will absolutely work but cant hurt. You can look for it on PubMed I will find it if you dont and send you the link.

Please pray for us all. My name is Angela * live in Florida. You and dhw will be in my prays too! I will ask my church to pray for you at mass also!

I forgot to ask had you had any recent vaccines before or after your trip? I had the flu and pneumococcal vaccine when I became ill. My doctor believed it caused my illness. He said no more vaccines.

I will pray for you Angela. I am going this 17th of May to the church in Paris. The name is St Nicholas des Champs. Look online and you will how God is merciful there. So so many testimony. Last month I went with a friend who doesn't speak and understand French and I had to translate for him. This friend has been visited during the passage of the blessed sacrament and has been ill. Since that day about three weeks now he doesn't sweat like he is in the bath while he is sleeping. He said his sweating had been going on for fifteen years and no doctor was able to give him an explanation. Pray as well for me. My name is Christelle. Let's pray for each other I am sure we will laugh about all those fears

dhw232 give me your name I will always put in the request basket and raise it to Jesus during the Eucharistic

This friend has been healed and the priest said someone who doesn't speak French is visited but Jesus and is healed and the priest said that personne came with someone who translate everything happening here to him.

Yes, Angela, I had a flu vaccine in Oct of 2016 and 2017, but I had the twitch in my finger before that, I think. I’ve had one every October through my work for several years. I do take ALA and eat Brazil nuts for selenium. I’ll definitely look for the PubMed study online. Blessings to you both.

It’s Danette. Thank you, Christelle. 

When did your weakness start? Have you looked at your legs to see if they are twitching that may be the crawling sensations or you may be feeling the nerves. Keep taking the ALA. I wonder if you may have something from the vaccines or do you have silver fillings the mercury has said to cause these symptoms. Plus did your vaccines come from a vial or single dose? Vial doses still have mercury. Keep strengthening your immune system. Bless you too.

I will pray for you and Angela each time I do a mass. Pray as well for us. We will find an answers to our health issues which I know is not ALS and we will recover. Just imagine all of us holding the feet of Jesus and ask him for mercy upon our lives and our families.

 

I have no idea what the muscle movements/crawling sensations are. They could be parasites or the motor  nerve firings. I do have 7 amalgam fillings, unfortunately, that I’ve had for 45 years. My neuro and dentist do not advise removing them, but so much research suggests it’s a good thing to remove the metals. My dentist says she will remove them, but thinks it’s a waste.  I will keep trying to build up immune system, eradicate the parasites and praying lots.Thank you both!

A beautiful image, Christelle! God is good all the time...

Hi Danette

Me too got about 6 to 7 silver fillings but planned to get rid of by end October. How do you get rid of parasites?

You can take high powered pharmaceuticals but often these drugs throw you into “flu-like symptoms” because of the abundance of toxicity that is released from the parasites. So I’ve taken the gentler approach of taking mimosa pudica, oil of oregano, garlic pills and L-ornithine, to help my body process the ammonia. It takes several months to detox, but hopefully, it will be worth it. Have a good Monday!

What about green clay? I read it is very good. I have started a detox with marshmallow roots and I will ask a dietitian about a good protocol.

Hourray! I am going to pray for us again this coming Thursday in France.

Safe travels to you and thank you for your prayers. 

How are you feeling? I wanted to ask you the twitch in your finger in the beginning did it stay there constantly or come and go? How is you legs did the crawling sensation go away? Hope you are better.

Hello Angela, in the beginning, the twitches were off and on, but not when I slept. They are still like that, although I have them in my legs too. I’m still hopeful that this is roundworms. One stool test was positive, one was negative. Each day is a gift. I hope you are well. Keep praying for us all. 

Sorry to keep questioning you about your symptoms. How long did your finger twitch before you got frozen shoulder? I have been praying that you will be okay and you improve. How are you now still able to walk and do everything like normal? Do you have weakness in your limbs? Have you seen the doctor again?

I guess I am just wanting to k ow how you are feeling and if you are able to do most everything and hoping you are improving.

How are you doing? How was your trip? How are your symptoms?

Hi Angela

My trip was fabulous. Keep praying for both of you. My symptoms are more related to malapsortion of nutrients because I have been suffering for digestive issues for years. So I really don't think of something other than healing my guts. When I eat gluten and lactose I can feel all the symptoms and when I strict to my diet everything disappear.

And I continue to talk to the great healer for help

I think I am fine but I developed a lot of anxiety from my illness in 2016. So sometimes even a small symptom will frighten me. I hate it. Over all I am much better. Glad to hear you figured it out and can do something to help it.

So, isn’t that gluten ataxia? I’ve read a bit about it. Its symptoms replicate ALS. I have a gastro appt in July.  What tests have you had that showed malabsorption? Have you been tested for celiac disease? Sending healing thoughts and prayers to you both. 

Hi Angela, it’s good to hear from you. I got frozen shoulder at the same time I noticed the twitch in my index finger. I’m still walking-no assistance needed. But my weakness in my hand and legs is getting worse. I want to check for celiac disease. And I did have a positive test for roundworm parasites and yeast overgrowth. Gross I know! But the second test at dr office came back negative.  So, I just have to keep searching for answers. Drs don’t seem to be helpful right now.  I keep praying for you all. How are you doing?

Th e fibro endo showed inflammation related to gluten but the Celiac blood test was neg.

The Functional doctor told me that gluten deposit on the nerves to cause damage. Buy the book Autoimmune Fix and you will understand

I’ll look for the book. Thank you. Its so hard to go gluten, soy, dairy free, but it’s how we should all be eating. I read that on the AIP protocol, we should eat 8-14 servings of veggies a day. I’ll do it to be healed. Bless you. 

I am ok. I am doing better. I get random twitches here and there but they never last more then a second and I used to get them all the time now I rarely get one but every once in awhile I get on like on my thumb then its gone for months. The GBS people tell me tgis is normal. They get them all the time. I am sorry you are going through this and I pray you find a solution. I am going to try and increase my vegetables too. I had a repeat emg on the 12th and it was normal. My neuromuscular neurologist said I don't need to see him anymore. I hope you are seeing a neuromuscular neurologist becasue I dont put much faith in regular neurologist when it cones to reading emg.

So the doctor you saw was he a regular neurologist or a specialist like a neuromuscular neurologist? I would go to a highly rated place for a second opinion. Your in Texas can you go to the place in california that is highly rated?

Texas Tech University Health Sciences Center El Paso

4801 Alberta Ave.

El Paso, TX 79905

Medical Director - Dr. Darine Kassar

Phone: 915-215-5900

Doctors' Hospital at Renaissance

2821 Michael Angelo Dr.

Ste. 306

Edinburg, TX 78539

Medical Director - Dr. Zuka Khabbazeh

Phone: 956-362-2440

University of Texas Health Science Center-San Antonio

Medical Arts & Research Center

8300 Floyd Curl Drive, 4th Floor, MC 7883

San Antonio, TX 78229

Medical Director - Carlayne E. Jackson, M.D.

Phone: 210-450-9700

Fax: 210-450-6039

Baylor College of Medicine

Department of Neurology

6550 Fannin Street, Suite 1801 (Smith Tower)

Houston, TX 77030

Medical Director - Yadollah Harati, MD

Phone: 713-798-7411

Fax: 713-798-8573

The Emory Bellard ALS Clinic

Baylor Scott & White Health

300 University Blvd.

Building A

Round Rock, TX 78665

Medical Director - Dr. Jeffrey Tramonte

Phone: 512-509-4031 or 4032

Fax: 512-509-4050

Texas Neurology ALS Center

6301 Gaston Avenue

West Tower, Suite 400

Dallas, TX 75214

Medical Director - Daragh Heitzman, M.D.

Phone: 214-827-3610

Houston Methodist ALS Clinic

6560 Fannin, Suite 802

Houston, TX 77030

Medical Director - Stanley Appel, M.D. and Ericka Simpson, M.D.

Phone: 713-441-3760

Thank you for sending these names and resources, Angela. I have seen Dr Jackson in San Antonio. She agreed with original diagnosis unfortunately. But with ALS, it’s a diagnosis of exclusion. So I’ve ordered a Lyme test and will see a gastro doctor soon. I pray I can get tested for celiac. The trouble is you have to eat gluten for at least 6-8 weeks before being tested. Thank you for your prayers and it’s such good news that you got an all clear from your neuro. Muscular physician.  I’ll keep you both updated. Here’s to healing! 

Please message me when you need to talk. I pray it is a misdiagnosis but if it turns out to be true plan to get the best care you can and don't be afraid to ask for as much as you can because you can live a longer life with all of the advancements now and try stem cell therapu as soon as possible some people have had good luck with it plus some people actually go into remission. Bless you.

Why do you not put much faith in a “regular” neurologist? Unfortunately, the Neurologists here (because of the small numbers) all know each other and would be very hesitant to refute a diagnosis. I will see if there’s someone out of TX to see if these other diagnoses don’t pan out. Thank you so much for the discussion.