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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ALS diagnosed !!

patient.journey

patient.journey

Senior Member
Messages
443
gregh286 said:
one thing that nails oral thrush is garden of life SBO. Most likely in your gut too then. Get.on Garden of.life soil based probio for a week see if your symtoms improve when your thrush reduces.
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Can you please send a link to see what is this product
 
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Omar88 said:
Sorry to hear that you were misdiagnosed too , we are all through the same thing
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I was trying to make a different point from this. I was trying to say that in fact I wasn't misdiagnosed in these examples, these were just doctors' speculations through the diagnostic process. This is different from my CFS/ME and POTS diagnoses which included letters to my GP doctor confirming that this is what I have.

I was trying to clarify whether you have been given a formal diagnosis or if it is more like doctors are still going through the differential diagnosis process so more like "this result fits ALS but I'm not sure about... We need to test..." ?
 
patient.journey

patient.journey

Senior Member
Messages
443
Jenny TipsforME said:
I was trying to make a different point from this. I was trying to say that in fact I wasn't misdiagnosed in these examples, these were just doctors' speculations through the diagnostic process. This is different from my CFS/ME and POTS diagnoses which included letters to my GP doctor confirming that this is what I have.

I was trying to clarify whether you have been given a formal diagnosis or if it is more like doctors are still going through the differential diagnosis process so more like "this result fits ALS but I'm not sure about... We need to test..." ?
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I got my CFS diagnose in 2012 after a viral infection that had me staying in bed for 4 months and barley get out the house 1 year later

Neurological problems came years behind so the misdiagnosing is mostly what is happening now
 
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Ah no I still mean something different, but my brain is done in right now. If I can think how to articulate what I mean I'll come back.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
@Omar88 Sorry for my confusion but have you been given a definitive diagnosis of both Lupus and ALS, or were these diagnoses given as tentative while they were running tests, but have now been ruled out? I'm sorry to hear that you have been feeling so poorly.
 
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patient.journey

patient.journey

Senior Member
Messages
443
I came back here to thanks all who cared and replied when I posted my thread about my diagnose !

It seems that multiple symptoms with the doctors non knowledge of what is happening do lead to multiple diagnoses unfortunately!

Between lupus , CFS , Fibromyalgia and ALS ,,
Diagnose do change with new doctors or hospitals as we don't have a clinic or a doctor who deals with CFS so the three main clinics I visit are infections disease doctor who believe it's a post viral infection (CFS) and I don't get into a lot of discussion with him so I won't lost routine testing he makes every three months !

Immunology clinic is my second clinic with 2 doctors usually setting and going through a positive ANA might mean nothing but might do and for some one with your symptoms and 640 titer results its either lupus or undifferentiated autoimmune illness and plequnil is given for a year but am not on it yet

Neurology clinic went further with fibromyalgia and finally ALS as I do have trouble eating , shaking parts , eye pains , sensitivty to light , body shakes and when am so sick i have trouble speaking ( lyrica is felling my room which I usually doesn't use , MRI and cr scans were done and the doctor rules out ALS as he now think it might be caused from my condition as I thought since the beginning)

Thanks for every replay and to each part of this great community for the care they give
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Omar88 said:
I came back here to thanks all who cared and replied when I posted my thread about my diagnose !
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Thanks for the update and I had wondered how you were doing @Omar88.

Omar88 said:
Immunology clinic is my second clinic with 2 doctors usually setting and going through a positive ANA might mean nothing but might do and for some one with your symptoms and 640 titer results its either lupus or undifferentiated autoimmune illness and plequnil is given for a year but am not on it yet
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I can't believe that any doctor would dismiss a positive ANA titer at 1:640 as nothing! (Actually I can believe it but is disheartening to hear). Will they be testing you further for autoimmune diseases? I was confused from what you wrote, will you be trying the Plaquenil?

Omar88 said:
MRI and cr scans were done and the doctor rules out ALS as he now think it might be caused from my condition as I thought since the beginning)
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That is great news that ALS has been ruled out! Please keep us updated as you learn more.
 
patient.journey

patient.journey

Senior Member
Messages
443
Gingergrrl said:
Thanks for the update and I had wondered how you were doing @Omar88.



I can't believe that any doctor would dismiss a positive ANA titer at 1:640 as nothing! (Actually I can believe it but is disheartening to hear). Will they be testing you further for autoimmune diseases? I was confused from what you wrote, will you be trying the Plaquenil?

First of all thanks for asking and caring

That is great news that ALS has been ruled out! Please keep us updated as you learn more.
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I developed the positive ANA after 3 years from getting the virus and starting my CFS case , it wasn't positive before and now it's always at 1:160 and did goes up twice while I was under the test to 320 and 640 !

I was tested for a hall panel multiple times and nothing was revealed + I don't show the typical symptoms of people who have autoimmune ilness like fever while I don't get any since my case developed after an infection in 2011 , I don't have positive inflammatory results and I didnt test positive for secondary autoantibody panel or finally low c3 or c4 !

I have plequnil but I didn't start it until now as it does comprise immune system little bit and my previous cortisone trial was a pain and illness for a hall month while I just was on it for 5 days , so am really afraid from this path .

My infection disease thinks what is causing my positive ANA is the infection which he think it's EBV , CMV or anything else which is taking all over the body and make my immune system attacks every where and am into that really .
 
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Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Omar88 said:
I developed the positive ANA after 3 years from getting the virus and starting my CFS case, it wasn't positive before and now it's always at 1:160 and did goes up twice while I was under the test to 320 and 640!
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I am pretty similar and my ANA was always negative (post Mono/EBV and high viral titers) and it was not for about three years that it turned positive at 1:160.

Omar88 said:
I was tested for a hall panel multiple times and nothing was revealed + I don't show the typical symptoms of people who have autoimmune ilness like fever while I don't get any since my case developed after an infection in 2011
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I am similar and have not had a fever, flu, cold, or traditional illness since Jan 2013 (5+ years).

Omar88 said:
I have plequnil but I didn't start it until now as it does comprise immune system little bit and my previous cortisone trial was a pain and illness for a hall month while I just was on it for 5 days , so am really afraid from this path .
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I was just curious because you mentioned it but I have never taken Plaquenil. I have taken Cortef (hydrocortisone) for 3.5 years and recently started a VERY slow taper to get off of it. At the current rate it will take me 1.5 years to get off of it but my prior two tapers were disasters and I am willing to do it slowly b/c I think it will succeed that way.

Omar88 said:
My infection disease thinks what is causing my positive ANA is the infection which he think it's EBV, CMV or anything else which is taking all over the body and make my immune system attacks every where and am into that really.
Click to expand...

So your infectious disease doctor thinks your high ANA titer is due to EBV, CMV (viruses) attacking the body versus autoantibodies?
 
patient.journey

patient.journey

Senior Member
Messages
443
@Gingergrrl am sorry for your case , and am sorry I don't know how you guys decide my answer to parts and replay to it

My infection disease team which have multiple doctors in the same hospital loves to show my CFS weird case to thier students because they didn't see any one before in young men in my age, they believe a viral infection is causing what am having and they ran the herpes family panel pcr , entro viruses too and there were negative so they can't be sure of any while my tender swollen lymph nodes with reactive lymphocytes biopsies and high cd 8 with my replaces says another thing they just say it might be not showing in the blood test !
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Omar88 said:
and am sorry I don't know how you guys decide my answer to parts and replay to it
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I wasn't sure if this is what you meant, but are you asking how to quote parts of someone's message? If so, you highlight the sentence or portion that you want to quote and then click either "reply" or "multi-quote" If you just want to reply to that one thing, it is easier to hit "reply" (and what you selected will appear in the reply box).

But if you want to reply to several different sentences, or posts in the same thread, then hit "multi-quote" and you can keep doing this until you are done. Then you go to the box where you would type and click "insert quotes" and they should all appear. I'm sure someone else could explain it better than I just did!
 
patient.journey

patient.journey

Senior Member
Messages
443
Gingergrrl said:
I wasn't sure if this is what you meant, but are you asking how to quote parts of someone's message? If so, you highlight the sentence or portion that you want to quote and then click either "reply" or "multi-quote" If you just want to reply to that one thing, it is easier to hit "reply" (and what you selected will appear in the reply box).
Click to expand...

Test
 
A

ashyam86343

Messages
16
@Omar88 went through your post, sounds similar and i think i have the same as yours. Now my only concern is nerves disorder. other problems resolved after many attempts with Western medicines, moved to herbal & strict modified paleo diet. It helped to strengthen my gut and swallowing issue. However my numbness of hand, leg & back pain did not solve.
Muscles on my hand & feet almost gone, reduced 5kgs of weight during this lockdown as restricted movements.
nerves are visible clearly in body, numbness and backpain in night during sleep is my issue now.
Almost all the hospitals are filled with corona patients, attention to other patients are less. Struggling to get doctor appointment.
Anybody can give reviews about Ceragem therapy or Bemer therapy for nerve disorder. i would suggest the same for Omar, if it has good comments.
@Gingergrrl @Hip @Jammy88_2
 
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