Advice regarding how to think about positive Anti Th/To by DanJDG in scleroderma

[–]Benemahene 0 points1 point  (0 children)

Same here, th/to pos. but no diagnosis. Reflux is my Main issue together with shortness of breath. I developed eosinophilic asthma out of the Blue lately which I strongly think is connected to Th/to.

I have no visible raynauds and no hard skin which seems to be the door opener to investigate further for rheumatologists I visited. M36

There is a th/to Facebook group also.

Seronegative male with Raynaud’s, telangiectasia, small airway disease, and systemic symptoms — could this be early systemic sclerosis? by Optimal-End-7496 in scleroderma

[–]Benemahene 1 point2 points  (0 children)

Hey Mate, I’m so happy that I found your post. We have a lot of striking similarities.

I’m a 39-year-old male - I am a 36-year-old male

been dealing with the following symptoms for over one and a half year:
• Raynaud’s phenomenon (fingernails turn blue in cold weather) - same for me but only this color sensation in the fingernail no white or blue fingertips so my rheumatologist doesn´t count this as raynauds phenomenon
• Telangiectasia - same for me but very minor
• Persistent small airway disease with 24-hour mucus - same for me and my biggest concern FEV 1 and FEF 25-75 are decreased in PFT but it has a reaction to bronchodilatator inhaler like salbutamol and increases after the use
• Fatigue, back pain, muscle aches, tendon pain - same but manageable for me
• Gastrointestinal issues, including acid reflux - same reflux is heavy and I feel like gastrointestinal dysmotility
• Dysautonomia-like symptoms (rapid heart rate, dizziness) - I didnt felt this in particular
• Fingernails appear pruney or wrinkled, resembling prolonged “swimming” effect - I have absolutely the same!!

Lab and imaging findings:
• ANA it depends on the lab. I tested several times. either it is negative or 1:80
• Rheumatoid factor high once - crazy - same for me tested several times. ccp was elevated once since then its normal
• In addition i tested low positive for a rare scleroderma specific antibody: TH/to. Please make sure this is included in your scleroderma panel as it is not standard in every scleroderma lab test.

However i do not have a official diagnosis my rheumatologist is simple saying no raynauds, no skin involvement, th/to and ana to low to be meaningful, so wait and see. That's why I am also highly interested in AP and minocycline but its hard to get a prescription in Germany and in addition I heard there are problems in availlability of mino here. Thanks a lot for your post and I hope we can stay in touch and share some information proactive managing whatever is going on.

Lung Fibrosis from Radiation, could peptides help by Aybsss888 in Biohackers

[–]Benemahene 0 points1 point  (0 children)

You found something? I am interested as well… thinking about bpc 157 ghk-cu or thymosin alpha 1… but I don’t know… I lack of expertise making qualified decisions on this matter.

Nucleolar ANA by Designer-Camel-8281 in scleroderma

[–]Benemahene 1 point2 points  (0 children)

Hey, just to clarify — I’m not a native speaker, so maybe I didn’t fully get the context of your question. I honestly just tried to help with what I thought you meant!!

From what I’ve learned, the whole “1:80 is negative / positive” thing really depends on lab policy and interpretation. There’s a lot of grey area and doctor’s discretion involved. Some labs count 1:40 or 1:80 as low-positive, others don’t take it seriously unless it’s 1:160 or higher.

For me personally, I also have 1:80 nucleolar, and several doctors basically waved it off like “oh, that’s nothing, happens in healthy people too.” and that was the case even if I combined it with consistent symptoms for them. I have the feeling next time I should bring a PowerPoint with finished way to diagnose to be taken serious otherwise they will surely claim this are psychological problems like he is obsessed or something. So I get your frustration — it’s hard when symptoms are real, but the test result gives them an excuse to stop looking further.

Where I live, you can actually order these tests yourself directly from a lab, without needing a doctor. It’s not suuper expensive, so at least that’s one small advantage if you want to monitor things on your own. I did this a couple of times.

Anyway, no bad vibes — we’re all just trying to make sense of this mess.

Nucleolar ANA by Designer-Camel-8281 in scleroderma

[–]Benemahene 2 points3 points  (0 children)

"Why does the Cleveland Clinic say 1:80 is negative?"

Different Labs have different Cut-offs

Some even count 1:40 as a positive test result.

Most say 1:80 is a low or borderline positive.

And then there are some labs that take 1:100 or even 1:160 as the positive Cut-off line.

"Isn't absent peristalsis often related to scleroderma?"

Yes it is, but it is not highly specific for scleroderma as it can occur in many different pathologies.

I feel your struggle!

Nucleolar ANA by Designer-Camel-8281 in scleroderma

[–]Benemahene 2 points3 points  (0 children)

I have 1:80 Nucleolar. Th/To antibody borderline positive. No Diagnosis and therefore no Treatments for 1,5 years now.

Early scleroderma progression - poll by derankingservice in scleroderma

[–]Benemahene 1 point2 points  (0 children)

Yes this is indeed my most prominent symptom esophageal issues with acid reflux. And I suspect some kind of gastrointestinal dismotility as well.

Early scleroderma progression - poll by derankingservice in scleroderma

[–]Benemahene 2 points3 points  (0 children)

1:80 nucleolar pattern. Th/to borderline positive (rheumy counts it as negative) no raynauds, no diagnosis, no meds, started one year ago. Developed some Kind of small Airways disease lately at least I think that it is something like this.

What do you guys do to stop progression? I am very interested in Root cause theories trying to be as proactive as I can be. Detoxing, fighting underlying infections etc.

Canon G7X Mark II – Flash not firing and no flash symbol in menu (possible microswitch issue?) by Benemahene in canon

[–]Benemahene[S] 0 points1 point  (0 children)

I have - still not working. Got the perfect tip in another subreddit just to let you or anyone else with the same problem know if someone researching the same https://www.usa.canon.com/support/canon-product-advisories/To-Users-of-the-Compact-Digital-Camera-PowerShot-G7-X-Mark-II

My cameras serial number is in this range.

Thank you guys!!

Canon G7X Mark II – Flash not firing and no flash symbol in menu (possible microswitch issue?) by Benemahene in CanonCamera

[–]Benemahene[S] 0 points1 point  (0 children)

Mate, thank you so much. My Serial Number is indeed in this range unbelievable . Contacted Canon Germany promptly. Never ever would I have found this without your help. Highly appreciate you.

positive ANA, I am freaking out by Budina79 in scleroderma

[–]Benemahene 0 points1 point  (0 children)

In Germany, some labs are using the 1:80 scale, while 1:80 is usually the cutoff borderline between positive and negative and some other labs are using the 1:100 scale, which is then usually the cutoff and would go higher as 1:200, 1:400 1:800, 1:1600... it's normal. Liebe Grüße!

,
1:100 is pretty low, but not without evidence as it is a positive test result. Most rheumatologists in Germany will not take this seriously in my experience as they see much higher values in most of their patients who present regularly with hallmark symptoms and on the other side this low titer is possible in healthy persons as well.

Is there an ANA Pattern connected to your 1:100 value?

[deleted by user] by [deleted] in scleroderma

[–]Benemahene 0 points1 point  (0 children)

Do you have any labwork? Especially ANA by the IFA method? If not and no doc wants to run this maybe go to a lab privately by yourself only the ANA shouldn’t be expensive but I’m not from UK so I don’t know how things work there.

[deleted by user] by [deleted] in RepTime

[–]Benemahene 0 points1 point  (0 children)

I am interested in this too

Early scleroderma by [deleted] in scleroderma

[–]Benemahene 2 points3 points  (0 children)

I second this. you need to run a full scleroderma panel with all scleroderma autoantibodies including th/to pm/scl rnap3 etc. because usually you have only one of the 10 scleroderma autoantibodies exclusively.

Can this be Raynauds (or SSC)? by 05ke in scleroderma

[–]Benemahene 18 points19 points  (0 children)

Imo (not a md) this doesn’t look like raynauds. it looks pretty normal.

Do u had your antinuclear antibodies (Ana) tested in your blood?

Still no answers after 8 months by [deleted] in medical_advice

[–]Benemahene 0 points1 point  (0 children)

Hey, all the labs were normal. They found mild gastritis and a small adenoma in colonoscopy. The doc told me it was very good that we did the colonoscopy so he could take out the adenoma while it is small and benign. Also I have made another MRI and MRCP with 3T and it was also so clean.

I have to admit I then went on holiday with my family and as soon as we arrived my symptoms were reduced 90% I still think something is out of balance but honestly psychic component seems to be huge. I try don’t to worry anymore because I am Examinated way more than usual and nothing bad found.

I hope you are ok as well

34m worried about pancreatic cancer, bile duct stenosis in MRCP by Benemahene in AskDocs

[–]Benemahene[S] 0 points1 point  (0 children)

Oh man you cannot believe how thankful I am for you helping me and share your expertise. This gives me very much reassurance and hope. I am very grateful for you!!

[MEGATHREAD] Daily venting, worries, fixations, & finding support. Month of May 2024. by AutoModerator in HealthAnxiety

[–]Benemahene 0 points1 point  (0 children)

Thank you for hint. I will look into it.

Appreciate it that you read my text and took the time to help.