ALS diagnosed !!

[patient.journey]

today they stopped my antibiotics after 7 days with no getting better , doctor didnt know whats wrong he provided pain killers and asked for new urine analysis and culture and stool analysis ..

i was driving and i felt nausea , rashes every were , itching ,flank pains , bloating , brain fogs , body aches and a feel of poison in my body !! went home to after i had some bowel movements the symptoms got little better ,, now am rally lost while am trying to be positive my body is not helping ..

if any one had something like this before i would like to hear it

regards

 

[bombsh3ll]

I'm sorry things have not improved for you Omar.

I've not had that symptom combination myself (although I do frequently get nausea, brain fog, body aches and feeling generally toxic or poisoned, as part and parcel of ME) but here are some suggestions, sorry if these have already been tried;

Itching & rashes ?reaction/allergy to something. This could be food, medicine or anything else. Did it start before or after the antibiotics? Have you tried any antihistamines?

Flank pains & blood in the urine that you mentioned earlier ?Kidney stones. Have you had any scans taken to look for these, or any personal or family history of kidney stones? They can cause those symptoms without necessarily any infection in the urine.

Bowel symptoms, brain fog, bloating, feeling of being poisoned - ?side effect or altered balance of intestinal bacteria secondary to antibiotics, particularly multiple courses. Did you have digestive problems before the onset of these symptoms. Have you been tested for coeliac disease or other intolerances?

I do hope you manage to find both answers and relief.

 

[patient.journey]

I'm sorry things have not improved for you Omar.

I've not had that symptom combination myself (although I do frequently get nausea, brain fog, body aches and feeling generally toxic or poisoned, as part and parcel of ME) but here are some suggestions, sorry if these have already been tried;

Itching & rashes ?reaction/allergy to something. This could be food, medicine or anything else. Did it start before or after the antibiotics? Have you tried any antihistamines?

Flank pains & blood in the urine that you mentioned earlier ?Kidney stones. Have you had any scans taken to look for these, or any personal or family history of kidney stones? They can cause those symptoms without necessarily any infection in the urine.

Bowel symptoms, brain fog, bloating, feeling of being poisoned - ?side effect or altered balance of intestinal bacteria secondary to antibiotics, particularly multiple courses. Did you have digestive problems before the onset of these symptoms. Have you been tested for coeliac disease or other intolerances?

I do hope you manage to find both answers and relief.

thank you for the replay

they did a CT scan and ultra sound and nothing was shown except a cyst on kidney and i had something on my liver before i got CFS symptoms ..

my urine tests prior to antibiotics was negative 3 times for bacteria but i was one week after another antibiotic so did it effect ? my doctor says no as i have symptoms and 3 days is enough ,, 5 urine analysis didn't show bacteria also !! weird or blood for the last two tests but doctor didnt have another thoughts so he put me on keflex ..

it seems i have over growth of bad bacteria and i have big problems with my colon as in my 6 years with this illness had 1 year of antibiotics of combined the days ...

tomorrow am giving the routine normal tests to chick how the body is functioning hope every thing will be fine ..

regards

 

[Silence]

Thanks for posting this, it also makes me think.
What would you have done differently, since you only had the ME/CFS diagnosis at the time?

Its really hard to say... hindsight is 20/20 as they say. Looking back, I would just say to keep an open mind about your symptoms and to not attribute everything under the diagnosis of CFS/ME or maybe you can, but really, at the root, what is the mechanism that needs to be fixed/addressed. All the clues were there for me in the beginning. Perhaps I would have sought medical intervention earlier when the signs were mild. But we all know what a roller coaster ride that can be when you are thrown from one specialist to another and all you end up with is a bill you can't pay and still no answers to your problems.

As with CFS, I wished I would have tried treatment and interventions when my condition was at its mildest and had the most energy to visit doctors. Now I am in a severe state and visiting doctors or trying new treatments can put me in a worse place. Which is where I stand now.

 

[Gingergrrl]

tomorrow am giving the routine normal tests to chick how the body is functioning hope every thing will be fine ..

@Omar88 You hadn't posted in a while and I was wondering how you were doing? Are you any closer to a diagnosis now? No worries if you are not able to reply and just hoping that you are okay.

 

[patient.journey]

@Omar88 You hadn't posted in a while and I was wondering how you were doing? Are you any closer to a diagnosis now? No worries if you are not able to reply and just hoping that you are okay.

Having bad times

Thanks you for asking

 

[patient.journey]

@Omar88 You hadn't posted in a while and I was wondering how you were doing? Are you any closer to a diagnosis now? No worries if you are not able to reply and just hoping that you are okay.

Hey gingergrrl

My ANA was negative was positive in a month - negative in the other one - then low positive !

Had 3 new diagnosis : lupus , sorjen - ALS

Symptoms goes up and down and heavy testing didn't show anything except the changing ANA then my CBC smear had normocytic normochromic red cells with high MCV and MCH , every thing else is normal !

Am better than before it seems that flagyl was going to cause me death upgrading my symptoms to the risk zone , ( I would never take it again ) !!

Now I have colon pains and thirst attack but better a lil than before and they did many stool testing and one CT scan trying to rule out colon cancer because of the colonscopy risk specially with unknown immune status I have so every thing is complicated

Am standing for better tomorrow and will start heavy metals detoxing and colon cleansing next week hope things would get better

"Even the darkest night will end and the sun will rise"

 

[AndyPandy]

Thinking of you @Omar88

 

[PinkPanda]

@Omar88 have you been checked for B12 and folate deficiency? I think high MCH MCV can be caused by B12 or folate deficiency.

 

[Thinktank]

Hey gingergrrl

My ANA was negative was positive in a month - negative in the other one - then low positive !

Had 3 new diagnosis : lupus , sorjen - ALS

Symptoms goes up and down and heavy testing didn't show anything except the changing ANA then my CBC smear had normocytic normochromic red cells with high MCV and MCH , every thing else is normal !

Am better than before it seems that flagyl was going to cause me death upgrading my symptoms to the risk zone , ( I would never take it again ) !!

Now I have colon pains and thirst attack but better a lil than before and they did many stool testing and one CT scan trying to rule out colon cancer because of the colonscopy risk specially with unknown immune status I have so every thing is complicated

Am standing for better tomorrow and will start heavy metals detoxing and colon cleansing next week hope things would get better

"Even the darkest night will end and the sun will rise"

Sorry to hear about your diagnosis.
You say you've been diagnosed with lupus and ALS. Have the doctors not proposed any treatment for that? I think treating the lupus and ALS should be your top priority. Colon cleansing and heavy metal detoxing is not going to make you feel better.

 

[patient.journey]

@Omar88 have you been checked for B12 and folate deficiency? I think high MCH MCV can be caused by B12 or folate deficiency.

It's in the normal range

 

[patient.journey]

Sorry to hear about your diagnosis.
You say you've been diagnosed with lupus and ALS. Have the doctors not proposed any treatment for that? I think treating the lupus and ALS should be your top priority. Colon cleansing and heavy metal detoxing is not going to make you feel better.

I don't believe those diagnoses are correct , it's mostly my symptoms are going worse affecting my neurological system causing ALS like symptoms and for Lupus diagnose , most of us here would meet the criteria if they have positive ANA ( while it's changable as I mentioned and all other tests are normal ) the doctor wants me to start cortisone and looking to the heavy oral thrush already there before I try and my immune system problems , it's really not the best choice!

While I don't believe I have lupus either I will try to ask for another kind of treatment if the insurance approved it, might sth help like anti malaria drugs or IVIG , maybe one of them would help

 

[Thinktank]

I don't believe those diagnoses are correct , it's mostly my symptoms are going worse affecting my neurological system causing ALS like symptoms and for Lupus diagnose , most of us here would meet the criteria if they have positive ANA ( while it's changable as I mentioned and all other tests are normal ) the doctor wants me to start cortisone and looking to the heavy oral thrush already there before I try and my immune system problems , it's really not the best choice!

While I don't believe I have lupus either I will try to ask for another kind of treatment if the insurance approved it, might sth help like anti malaria drugs or IVIG , maybe one of them would help

How have the ALS and lupus been diagnosed and by whom? Both diagnoses are really serious and should only be given after careful examination with exclusion of other diseases. If you are doubting your diagnosis then you should see another doctor (or two) for a second and third opinion.

I don't know much about ALS but my girlfriend has SLE (lupus).
Just a positive ANA doesn't mean much. Did you have an ENA panel with Anti-DNA, Anti-SM, Anti-RNA, Anti-ssa/ssb? And how about your C3 and C4? How does your CBC look like?
Do you present any physical symptoms that correlate with lupus? Like a butterfly rash on the face, hair loss, skin lesions, vasculitis, mouth ulcer?

Perhaps get a swab from the thrush and have it cultured. If it's candida then it's easy to take some diflucan.

For lupus usually a high dose prednisone or prednisolone is given with hydroxychloroquine (anti-malarial) as initial treatment.

 

[patient.journey]

How have the ALS and lupus been diagnosed and by whom? Both diagnoses are really serious and should only be given after careful examination with exclusion of other diseases. If you are doubting your diagnosis then you should see another doctor (or two) for a second and third opinion.

I don't know much about ALS but my girlfriend has SLE (lupus).
Just a positive ANA doesn't mean much. Did you have an ENA panel with Anti-DNA, Anti-SM, Anti-RNA, Anti-ssa/ssb? And how about your C3 and C4? How does your CBC look like?
Do you present any physical symptoms that correlate with lupus? Like a butterfly rash on the face, hair loss, skin lesions, vasculitis, mouth ulcer?

Perhaps get a swab from the thrush and have it cultured. If it's candida then it's easy to take some diflucan.

For lupus usually a high dose prednisone or prednisolone is given with hydroxychloroquine (anti-malarial) as initial treatment.

Between CFS and ALS a lot of symptoms are the same , body spasm , tongue twitching and other ALS symptoms where the cause of this diagnose and it was from the two doctors who are specialists but I didn't got back because I don't believe in it !

For the lupus am sorry for your gf and for the testing I only have positive ANA that reach 640 at most but all other tests are negative , I have mouth ulcers , skin lesions , I have a rash on my face but I had most of them while my ANA was negative !

For any one with autoimmune illness it's fine to take cortisone but for CFS patients and for me specially , we don't know how the cortisone will react ! My oral thrush came along with early days of getting sick and no treatment worked for it , for 2-3 and it's back !

Every one have problems with immune system so going to immune suppression treatment can have severe side effects

 

[Thinktank]

I can understand your doubts about the ALS diagnosis but for the lupus part you should try to get a second opinion from a better specialist.

Mouth ulcers, skin lesions and a malar rash are not symptoms of CFS/ME. That coupled with a positive ANA may point to an autoimmune disease, lupus or perhaps MCTD?
ANA-negative lupus does exist so it can't be ruled out. Other tests like an ENA panel, C3, C4 and ofcourse symptoms will support a diagnosis. If your doctor has not done those tests then you should ask for it.

How does the rash present itself? Is it on the cheeks?

 

[patient.journey]

I can understand your doubts about the ALS diagnosis but for the lupus part you should try to get a second opinion from a better specialist.

Mouth ulcers, skin lesions and a malar rash are not symptoms of CFS/ME. That coupled with a positive ANA may point to an autoimmune disease, lupus or perhaps MCTD?
ANA-negative lupus does exist so it can't be ruled out. Other tests like an ENA panel, C3, C4 and ofcourse symptoms will support a diagnosis. If your doctor has not done those tests then you should ask for it.

How does the rash present itself? Is it on the cheeks?

ENA full panel are negative , C3 and C4 are normal and yes some symptoms are different between patients here and finally I never had lupus and I can remember getting sick with flu like symptoms and this disease started after , before that I was a healthy person

 

[Jenny TipsforME]

@Omar88 viruses are implicated as a trigger for lupus (ME isn't the only condition which has this feature).

Have doctors formally diagnosed you? Sometimes as I've been through diagnostic processes doctors have said things like "you have signs of Addison's Disease" or "this pattern indicates myopathy" but on further investigation I haven't been given that diagnosis, e.g. They don't write to my primary care doctor saying that is what is wrong.

I've never heard of anyone else with ME being misdiagnosed with ALS. This is unusual, and even if they aren't right, it may indicate you have something else.

 

[patient.journey]

@Omar88 viruses are implicated as a trigger for lupus (ME isn't the only condition which has this feature).

Have doctors formally diagnosed you? Sometimes as I've been through diagnostic processes doctors have said things like "you have signs of Addison's Disease" or "this pattern indicates myopathy" but on further investigation I haven't been given that diagnosis, e.g. They don't write to my primary care doctor saying that is what is wrong.

I've never heard of anyone else with ME being misdiagnosed with ALS. This is unusual, and even if they aren't right, it may indicate you have something else.

Going back in this thread and fourm you would find patients who were told that they had ALS and doctors were wrong , it was neurological problems with cfs which are misdiagnosed !

I know that viral infection can trigger lupus but except the ANA I don't have any other tests telling that is truth , and if am talking of symptoms we can say that half patients here will achieve it so there is no one answer

Sorry to hear that you were misdiagnosed too , we are all through the same thing

 

[gregh286]

Going back in this thread and fourm you would find patients who were told that they had ALS and doctors were wrong , it was neurological problems with cfs which are misdiagnosed !

I know that viral infection can trigger lupus but except the ANA I don't have any other tests telling that is truth , and if am talking of symptoms we can say that half patients here will achieve it so there is no one answer

Sorry to hear that you were misdiagnosed too , we are all through the same thing

In my worst days my doc considered ALS as you say symtom overlap. I had all over body twitching simultaneously. Lot of numbness and tingling etc. I had brutal thirst attacks.

Since then i learned a lot. Primarily i do believe CFS is a cell danger response and shut off oxygen and glucose to cell. I look forward to ritux trial as i think it will be promising. Brain fog etc just low o2 and glucose supply.Cells start to twitch heavily when mineral supply low in cell. Can be avoided by upping magnesium and potassium.

 

[gregh286]

Between CFS and ALS a lot of symptoms are the same , body spasm , tongue twitching and other ALS symptoms where the cause of this diagnose and it was from the two doctors who are specialists but I didn't got back because I don't believe in it !

For the lupus am sorry for your gf and for the testing I only have positive ANA that reach 640 at most but all other tests are negative , I have mouth ulcers , skin lesions , I have a rash on my face but I had most of them while my ANA was negative !

For any one with autoimmune illness it's fine to take cortisone but for CFS patients and for me specially , we don't know how the cortisone will react ! My oral thrush came along with early days of getting sick and no treatment worked for it , for 2-3 and it's back !

Every one have problems with immune system so going to immune suppression treatment can have severe side effects

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.

My tongue used to be heavily coated in thick yellow bacteria before SBO. Not all probios are created equal. I used them all vsl1...etc. SBO is.the job.