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e814

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Hello everyone I am a 27 y/o male insured under Kaiser Permanente. They basically have no updated expertise on Lyme Disease, not even CFIDS (at least the one doctor who asked me, 'What is CFIDS?' Really?!)

==== My symptoms:

Overall body twitching, fasciculations
Full body atrophy: lips, mouth, ear canals, around the eye, scalp, tongue, gland under tongue, tonsils, opening behind tonsils, soft palate (roof of mouth, very atrophied), limbs, glutes, NOSE CARTILAGE, everywhere.

Burning pain on palms, feet and mouth, mostly palms and back of mouth.

Watery eyes always tearing up, cloudy vision occasionally.

Foamy urine (latest 24 hr protein test, "normal")

Tachycadia, Hypertension (both happened years prior to the above symptoms)

Acute headaches.

==== TESTINGS:

2 LIMB EMG/NCV no abnormalities found
Head MRI normal
Slightly elevated ALT, now improved (from 55 to 66 to 59 to 44 yesterday; normal levels is <39)
fatty liver found via ultrasound
ELISA = "negative" (Been asking for a Western Blot, some MDs refused)

It's been a really scary year for me with no answers and the doctors could not explain what's going on and simply dismissed all of this as "anxiety".

Currently Taking
Doxycycline 100mgx2
Astaxanthin
CoQ10 100mgx2-3
Magnesium
Grape Seed Extract 300mg
Gamma Tocopherol Vitamin E

I would appreciate any input from you all. Should I get the 4 limb test instead or irrelevant? Strength is "normal" they all say but they all seem to ignore the loss of TONE and mass. Could this be Lyme? Thanks very much. :'(

P.S. I am not afraid of dying per se but more so leaving my sister and mother alone since we are still not very financially stable (TMI: ...after having left by our father. So I try to fill in his shoes)
 
Your tonsils are atrophied, really? Do you know what atrophy is?
 
Yes, I do. The ENT has said so as well. And simply dismissed it as "part of aging". Why the condescending tone?
 
E814

You are taking a powerful antibiotic, doxycycline, which has a range of unwanted effects starting with death and going on from there, for no apparent reason. Just to make matters worse you are taking magnesium which is contra-indicated with doxycycline.

You have had an EMG/NCV showing that you do not have ALS and yet you are posting on an ALS/MND forum asking whether you should have another EMG.

You claim to have bodywide advanced atrophy which none of your doctors, including the neuro, have noticed, with the exception of your ENT who has explained to you that tonsils naturally do become smaller as they age.

It is difficult in these circumstances to disagree with the view of your doctors that you are suffering from anxiety; you really do need urgent help to deal with that anxiety before you manage to inadvertently kill yourself with self medication. I hope that you get the help that you obviously need, and wish you the best of luck for the future.
 
My reply has gone into Modland, but it will no doubt turn up. I just wish to add that fatty liver degeneration is yet another of the long list of unwanted effects of Doxycycline...
 
You noted a lot of atrophy, but I saw no mention of weakness. In ALS, weakness is usually disproportionate to the amount of atrophy one experiences.
 
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Personally I don't understand why you are accusing me of having a condescending tone but anyway let me just clarify because to me you don't seem to understand what atrophy is.

Atrophy is simply the wasting of body tissue. Sometimes this is normal, or to be expected under the circumstances, or in the case of people with ALS a pain in the arse, that is a result of an underlying deadly disease process.

Now, normal atrophy occurs, in places like the tonsils after puberty, it is a normal biological process and to be honest I'm not even quite sure why your ENT would mention it, because well A it is normal and B - given your history with anxiety, he shouod have known not to feed the animal.

Now, expected under the circumstances atrophy is like if you break your leg and you get a cast put onit fr like 8weeks, when the cast comes of the leg is skinny and weak. Because you haven't used it so the muscles waste away. This muscle can be regained. Also similiary if your a body builder or keen gym goer an you suddenly stop your iron pumping routine the muscoe will atrophy, in realtion to their orevie size but if the ironpumper starts pumpin iron again, well his muwcles will regain what is lost.

Now, people with ALS, they get atrophy to, because the nerves die and thus can't send apropriate messages to the muscles to do stuff, and like the iron pumper on vacation, their muscoes start to waste except they not on vacation from their normal activities. They get weakness and such, and alsothey can't regain the muscle, because they can't use the muscle. In this case, there will be clincival signs, both visual, ie a train physcian will be abke to see the atrophy and access the subsequent weakness and There will be evidence of motor neuron death in an emg and it will progress.

You don't have any evidence in an emg.
You explain alot of normal atrophy
You don't say you have weakness.
You have sensory disturbences, these are not symptoms of ALS
You discuss your urine, to which i wish to raise my hands and ask why.
You are 27 which makes the situation even less indictive

Bottom line, your doctors don't think you have ALS, because you don't apoear to.
They are not concerned about the loss of tone because well, alot of it is normal.
So just go live your life an relax.
 
So, Rami, basically you simply questioned if I had atrophy, asked if I know what atrophy is and then called it "normal atrophy". Atrophy is atrophy.

I have seen more than ten doctors in just the past 12 months, all with differing opinions. I would not call these wedges on the sides of my tongue that keeps on "going away" and away and away, if you don't want me to call it atrophy, as normal. Four of those doctors have observed the gland underneath the tongue thinning out and revealing a three pronged stem as suspicious, noted that my soft palate has thinned out and raised concerns. Then one doctor does not know what CFIDS is.

So please I would appreciate if you refrain from being dismissive in your tone, now that you don't question that I have atrophy after all.
 
EDIT: I thought I was clear in saying that I have symptoms similar to Gusflowers, and that this is most likely not ALS so I was addressing a DDx issue if this could be Lyme Disease or otherwise.
 
Ddiagnosed = D D x = differential diagnosis. (Not sure what happened, I guess D and x when typed together is converted to the word "diagnosed" by some forum code)
 
I don't even know where to start with you. Just on a side not, I am not being dissmisive, I am just not feeding your desires the way you want.

I believe you are truly worried and concerned that your will not be able to fufill the responisbilities you feel you have for your family. I can understand that you are probably frustrated, seeing 10+ dpctors within a year and seemingly getting no where, would be frustrating for anyone. I think despite your beliefs that this is not anxiety, you do appear to be anxious and that is okay, there is nothing wrong with being anxious, it is not a shameful thing, it is something that can be addressed though.

How about I break what you have writtern down for you.

You say you have full body fasiculations - This could be Benign Muscle Fasiculation Syndrome(BFS), due to the absence of fasiculations on two EMG studies, this would be the most apropriate differenetial diagnosis.

You say have atrophy full body - well as I previecly stated a lot of your atrophy is normal. The palatine tonsils waste away after puberty, it is normal but who cares because people don't have tonsils, they're fine. What i am trying to say is it diagnostically irrelevent and insignificant. So don't mention it because it cpjust crowdsmthe situation and that will cause more problems. Anyway, lymes disease I understand does cause muscle tone loss around the facial muscles.
You don't mention weakness, which is probably why the doctors are not appearing to be overly cncerned.

you mention headaches and visual disturbances quick cpuple of questions

were are your headaches? Back of head, front, behind the eye, face, ect ect
How long do they last?
Anything precipate them?
Anything help ease them?
Do you get your cloudy vision with them ever?

Headaches can be caused by anything and everything. Your MRI was clear so we know you don't have a brain tumour causing them. Could be migraines, lymes, caffine, side effects from medications, dehydration, stress i could go on.
Migranes would explain your visual proboems if the happened at the same time as the headaches.

The vision alone, well, looking at your computer screen and going on disease forums for hours on end could do it. I mean if your mri was not clear, and showed lesions on the optic nerve i'd say MS, but it was clear so its not MS. Once again these could be side effects. Maybe you need goasses long/short. Could be normalish depemding on how frequemtly.


Burning pain hands feet and back of mouth -once again this wouldn't be seen in ALS. MS it would be but your MRI was clear. Lyme disease is possible and so are a number of other things.

So anyway, there are your differential diagnosises. Yes it could be lymes disease, that would explain some of your symptoms but maybe it is not.

sometimes doctors don't have the answers for us and this is frustrating and annoying and can makes you feel hoplessly lost and very worried, which sucks. But it doesn't change the fact that sometimes doctors don't have an answer what is wrong with us, the best they can do for you in this case, is tell you what is not wrong with you. You don't have ALS, or a brain tumour, or MS. Your EMG was clean, your MRI was normal and Perhaps you should g seek advise for pausible pyschological causes.

Sometimes it is easier to stop searching for an answer and just accept life the way it is.


PS if you don't think it is ALS, why are you posting it on an ALS website
 
This:
you don't seem to understand what atrophy is.

quite insulting. Maybe English is not your native language so perhaps there is lost in translation and the tone must have changed half way through.

PS if you don't think it is ALS, why are you posting it on an ALS website

For the Differential Diagnosis and the number of people who, like Gusflower have been undiagnosed but experience ALS-like symptoms. I mean, you label yourself as having an "undiagnosed neurological disease"

I hope you are not being a troll of some sort. Your presumptions are quite juvenile to say the least.

We all come here to seek clarity after the presupposed "experts" that are doctors have failed all of us. In Kaiser alone there is at least one patient who had been misdiagnosed as having MS only to find out they had something else.
 
E184

You have not responded to my comments; I am wondering why this is.

You are on *double* the normal dose of the powerful antibiotic doxycycline, and you tell us that your test results show you are suffering one of doxycycline's most unwanted effects ie. fatty liver degeneration.

Liver disease kills people, and yet you seem oblivious to this; you have given no explanation for why you are taking this antibiotic. Why?
 
Okay, you know what, I tried to be kind and considerate, tried to be empathetic and understanding of your plight, tried to provide you with answers and guidance. I tried to help you But you do not seem to want this help, well, at least not as much as you seem to, want to call me an "dismissive-insulting-juvenile-hypocritical-foreign-troll".

Isn't it a strange coincidence, you say I am dismissive, you think your doctors are dismissive, you seem to feel like everyone is just dismissing your fears. It is ironic, i guess, that the truth is, no one is dismissive of your concerns. For example you said the ENT dismissed the tonsil atrophy as age related but the truth is he did not dismiss it, he stated that what the cause was. Your doctors are not dismissing your symptoms as anxiety, they are saying your symptoms are caused by your anxiety. This is not dismissing a problem, this is explaining why something is not a problem, or in the case of the anxiety, this is explaining what is causing your problems.


I have not dismissed you either, I questioned one of your symptoms,( well what you claimed to be symptom anyway) because from my understanding, tonsil atrophy was something that happened after puberty and since you are 27, I assumed you had gone through puberty (though this could be my bad, I mean I should have taken the acne tablets into more consideration). It was for that reason, that I asked if you knew what atrophy was because to me, tonsil atrophy at your age would not be a problem, it would not be a symptom. Yet you put tonsil atrophy as a symptom, so I wondered, hmm maybe he's thinking of something else. I have not dismissed your problems, I have said these things could cause your problems and due to the normal results you have received from your EMG/NVC and MRI, your problems would not appear to be caused by these other things.


By the way, I say I have an undiagnosed neurological disease for a personal reason, it doesn't mean i am a hypocrite.
 
Hi, Grateful, it's not double the normal dose. I have acne vulgaris. This is a new Rx not something that i have been taking for a long time. The NAFLD has improved.
 
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