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Old 09-13-2014, 08:35 PM #1 (permalink)
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Default Does this sound like ALS?

First of all, I would like to say hello to everyone. I know my story is very long, but i need to share the whole picture to give you all an idea.

Here is my back story:
It started with my pregnancy, and light sensitivity, and a drunk/ spacey feeling that would come and go. I then miscarried, and for 3 weeks felt fine. Then one day, i woke up with the drunk feeling constantly, and the light sensitivity, and have been this way for 7 months straight, with no break in symptoms.
I saw a gastro in February who found yeast overgrowth in my stool. I thought nothing of it, i didn't even know what it was, until i started researching. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who deals with these types of issues seems i read a lot about regular doctors who don't believe in it. She put me on nystatin/diflucan for a month, and i had no relief in symptoms.
Things i have tested for:
Thyroid-Fine
Diabetes-Negative (Although blood sugar slightly out of range)
General blood testing- Ok (neutrophils that fight bacteria 2 points out of range), overall white blood count within range
CT head scan-Normal
Food allergy testing shows no allergies
Probiotics tried (None make any difference)
Doctor has tried (Metronidazole as it can help fight certain bacteria in the body)- Makes symptoms 10x worse
Nystatin and diflucan make symptoms feel 10x worse
GP a while ago said i had a sinus infection (I don't think she knew what was wrong really, she just went off me saying i had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.
So i am not sure if any antibiotic is making me feel worse, or these certain ones irritate whatever i have going on. So i just did a CDSA stool analysis that i heard really helps show up yeast, and what is resistant/sensitive to it. I just got the results, and it shows no yeast present in my stool, and this test took 3 different samples from different days. Now i am completely disheartened because i have no idea why i feel this way, and it is really scaring me. Does anyone know other things that can cause these issues?
I will give a quick run down of symptoms.
Constant drunk/high feeling
Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.
Head pressure. Also feel weird laying on my side in bed. It isn't vertigo like the room is spinning, but i just feel a little woozy when laying on either side.
Undigested food in stools
Hard pellet stools
Carbs/Sugar/Caffeine make symptoms worse
Garlic and olive oil make me feel worse?
Random itching over skin but with no rash (Sometimes mild hives are present)
Heavy feeling eyes/Sometimes feel very sleepy after food
Feel at best first thing in the morning
Sneezing sometimes/runny nose
Post nasal drip
Itchy anus/inside ears/nose
Slight runny nose sometimes
Had chronic constipation before this for 2 months
Had root canal-Had tooth removed, made no difference
GI upset- Discomfort in stomach area. Sometimes pains/nausea
Acid Reflux
Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck
Recently doctor told me i have a heart murmur
Had a food sensitivity test that showed no food sensitivities, but a high IgE
I am at my wits end, and i worry i have something really rare and life threatening.
I also have random body twitching all over.
The only thing the doctors found was a positive test for Epstein Barr Virus

Now i know 90 percent of these symptoms are not related to ALS symptoms, but the last part has been worrying me. I feel my hands are stiff, and i can move my hand around, but it doesn't feel relaxed. I also feel i can hold things no problem, but i have a harder time and can't hold as tight as i could before. Along with the muscle twitching, this has made me concerned. Most believe that i have lyme disease, and some other issues that go along with it, but some people in the lyme community i have spoken to believe ALS is actually chronic lyme disease. i have to admit that i myself am a bit skeptical of this, because of the decline of people with ALS, but some have stated they have read ALS patients respond to lyme treatment well, and people who were diagnosed with ALS tested positive for lyme. What are your thoughts?

Thank you for anyone who takes the time to read my story and respond.

Blessings xoxo
 
Old 09-13-2014, 09:21 PM #2 (permalink)
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Default Re: Does this sound like ALS?

Lots of people, especially in the "Lyme community" are giving you really bad, ignorant information.

Nothing you wrote has anything to do with ALS.

You're right to be skeptical. ALS is not at all "chronic lyme" nor do ALS patients "respond well" to lyme treatment. We wish it were that easy.

No doubt the twitches remind some people of ALS. But twitches in ALS don't work like that.

(Lyme comes up because it's one of a thousand diseases that are ruled out before ALS can be seriously considered.)

You don't have ALS, or anything remotely like it. Good luck with your doctors.
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Old 09-13-2014, 09:32 PM #3 (permalink)
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Default Re: Does this sound like ALS?

I was very worried about the weakness in my hands seems i heard this is usually an early sign

Last edited by David : 08-22-2014 at 05:44 AM
 
Old 09-13-2014, 09:51 PM #4 (permalink)
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Default Re: Does this sound like ALS?

Please read this. Als untangled is dedicated to exploring various unproven theories about als and evaluating them.

It seems like your symptoms could be post viral you need to follow up with a reputable physician but I agree with Mike it does not sound like ALS
Attached Files
File Type: pdf ALS Untangled No. 17 When ALS Is Lyme.pdf (64.9 KB, 388 views)

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Old 09-13-2014, 09:55 PM #5 (permalink)
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Default Re: Does this sound like ALS?

Short answer to a long post

NOTHING in your list of symptoms has anything to do with ALS

I sincerely hope you find out what is going on, obviously you are ill.

Please stay away from here, you are barking up the wrong tree.
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Old 09-13-2014, 10:23 PM #6 (permalink)
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Default Re: Does this sound like ALS?

I am not sure what you are referring to by me barking up the wrong tree. I have weakness in my hands which i read in many ALS patients was the first early sign. I just came here for advice, and was told that some people believe ALS is undiagnosed lyme. I wondered peoples thoughts on this. I don't know anything about ALS, but figured some people here my. Is weakness in hands not a symptom of ALS?
 
Old 09-13-2014, 11:02 PM #7 (permalink)
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Default Re: Does this sound like ALS?

Your personal medical recall and descriptive terminology is amazing. As versed as you seem to be how can you possibly be concerned that you have ALS? You have apparently have done some extensive reading concerning ALS as you wrote, ("I have weakness in my hands which i read in many ALS patients was the first early sign.") but then you write, ("I don't know anything about ALS,") ? Again, your personal medical recall and descriptive terminology is amazing... leaves one to wonder because as you wrote, ("I saw a gastro in February who found yeast overgrowth in my stool. I thought nothing of it, i didn't even know what it was, until i started researching.") that you haven't researched ALS equally as well. But, just my opinion.
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Old 09-13-2014, 11:10 PM #8 (permalink)
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Default Re: Does this sound like ALS?

To wonder what exactly? What i am saying is i read that weakness in hands is a symptom of ALS, but it is
a symptom of other things also. That detail alone made me concerned. Based on all my
symptoms and story, i believe i may have more than one thing going on. Hence why i came here to ask an opinion, and gave my full story. I don't know anything about ALS. I came here to confirm. Tons of people online said they believe ALS is undiagnosed lyme, but just because i read that, doesn't mean i believe it, nor make it true. I didn't come here to argue. I simply wondered if weakness in my hands sounded a cause for concern. When many diagnosed lyme patients said they believe ALS may be linked to lyme, i was also worried seems many believe i sound like i have lyme. I am just looking at all possibilities based off symptoms. I in no ways want to offend anyone.
 
Old 09-13-2014, 11:18 PM #9 (permalink)
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Default Re: Does this sound like ALS?

As you wrote, ("I don't know anything about ALS. I came here to confirm.") Three extremely knowledgeable members have given you 'confirmation' that you don't have anything that indicates ALS.
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Old 09-14-2014, 02:13 AM #10 (permalink)
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Default Re: Does this sound like ALS?

OK honey, you don't know anything about ALS.

SEVERAL people who DO know A LOT about ALS have said now - your symptoms are NOT ALS symptoms.

Let me tell you something about ALS - IT IS FATAL, NO CURE.

Your muscles waste and die.

This means that MANY of the people on this site can barely use their hands, can barely breathe, and have to use their eyes and special technology to very slowly type. My husband was dead within 11 months.

You obviously have health issues, but out of that huge list, you have picked one that you think is part of ALS, even though you only have perceived weakness not clinical weakness and you then don't want to believe us when we answer you.

Time to seek answers elsewhere, truly, we don't babysit here, we are too busy dying, caring for those dying, or recovering from losing the ones who have died.

Harsh but fair (as my son always says to me)

I hope you can now leave, knowing something about ALS.

All the best

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Old 09-14-2014, 06:54 AM #11 (permalink)
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Default Re: Does this sound like ALS?

Tillie, this Thread and the two that follow this one are about as real as the Tooth Fairy. Look how similar the screen names are... letters and numbers. These Threads are organized harassment to the Forum coming from someone or a group who find a sick sense of humor getting replies from sincere caring people to their completely phony, made up scenarios.
It's been a string of 20 to 30 (something) year old males, a run of mommies who recently gave birth, work out nuts, anxiety patients and most are too anatomy descriptive, medically descriptive with terminology that is way over their heads in comparison to how stupid they appear to be concerning ALS or MNDs. It's almost like med students write some of these Threads.

Thought I'd string this one along so I could write that her "Itchy anus/inside ears/nose" has nothing to do with ALS but can be the hole... ooops, whole problem that will trigger severe anxiety but is easily resolved by taking a daily shower.

Many of the all too similar, all too descriptive and all too ridiculous Threads are coming from someone or some group who find pleasure in taunting good people. Just my opinion.
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Old 09-14-2014, 10:40 AM #12 (permalink)
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Default Re: Does this sound like ALS?

Thank you for Tillie. I appreciate your feedback as well as all the others dealing with this horrid disease. I care greatly about others, and although my illness may not be fatal, i know what it is like to suffer. To the last post, you seem to have already made your mind up, but if you really think i get pleasure out of taunting sick people, and this was arranged, you are very wrong. I have shared my story on many health forums online dating back to January when it all started. My suffering is very real, and i can assure you i am not a med student. The only one who seems to be making fun of symptoms and one of my specific symptoms is anal itching, which you seem
to find so funny. Anyway, i only came back to thank those for the feedback. I am not posting anymore. All the best to all
 
Old 09-14-2014, 11:06 AM #13 (permalink)
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Default Re: Does this sound like ALS?

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Old 09-14-2014, 11:21 AM #14 (permalink)
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Default Re: Does this sound like ALS?

As you wrote, (" I have shared my story on many health forums online dating back to January when it all started.") and none of your very long list of symptoms, including the several references to your stools, indicates anything remotely related to ALS/MND. Hope you find your answer in one of the many health Forums you frequent.
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