So I had to take diphendramine/diphenhydrinate and with it caffeine/Mint essential oils to stay awake,
So I wanted to ask what is the possiblity of aggravating dystonia/tardive dyskinesia with diphenhydramine/diphenhydrinate/caffeine, is it highly possible that this would happen?
are there any numbers like percentages available?
Can I take these medications as liquid/crushed (powder), can I mix their liquid/powder forms together?
would this also undo their effect (they work on the principal of sedation, their primary relief is due to sedation), or is it a popular remedy to mix and use caffeine/Mint essential oils?

(long post.) Hi. My name is Nick. I posted my rare disease day story involving some of the findings that I had been detected back in 2021 & 2022. but that was a mere snapshot of what was going on. I had posted that story in january of last year & there have been a few new developments since then. For example I have a laryngocele. My geneticist has diagnosed a slew of conditions from craniofacial abnormalities to torticollis & there's a history of significant vomitting illnesses in childhood that changed into lower digestive issues later on. My most recent illness was the worst one I had yet & it took d3+k2 & b12 supplementation to calm it down after a year & a half of fatigue, diarrhea, that was preceeded by sore throat, coughing (this led to the laryngocele.) & sinus congestion. My geneticist has effectively given up because standard test like emg & blood work are underwhelming & is going to put me through WGS testing because Exome sequencing was unspecific. . .I feel like I should be ashamed of myself for putting myself through this. On top of this there's no support from family whatsoever. I feel like everyone's mistake child. :'(

Below is everything that I've dealt with up to this point form birth to now. . .

27 year old male 6 foot 3 inch between 160-170lbs & skinny male. Active male with a stored history of medical issues both physical & psychological stemming from birth. I was born with a stroke w/thrombocytopenia & minor complications including laryngomalacia, mild weight restriction at 2189 grams, undescended testicle, 2 small holes in the heart that healed w/out surgery, & being put on a home apnea monitor with nursing visits for a time. In childhood I would always have a head tilt. I also couldn’t fully turn my neck to the left for whatever reason. History of puking illnesses as a child that evolved into severe ibs (bile acid malabsorption) in late childhood, History of hives in childhood that would occur on the back, history of right arm jerks in childhood followed by jaw spasms in adolescence that lead to arthralgia. Grew pretty quickly & had speech delay until around 9 years of age.

Fast forward to the summer of 2019 there was a basement flood that turned out to be asbestos contaminated water. We got everything in my bathroom replaced along with carpet.

All was good for a while until I started getting repeated sore throat/coughing up yellow/green phlegm every spring starting in 2019 along with fatigue not getting better with rest & naps. I had developed cognitive issues at the time. This had gone on for at least 2 years. Got a pinched nerve in the neck along with swallowing challenges mostly with water before we moved in late 2021 & I had to address this somehow. 

I saw a geneticist in august 2021. They noted some distinct facial features including “Small triangular face & jaw, small mouth, slightly arched palate, & teeth on lower jaw are a bit pointed.” with in the after visit summary an aortic hypoplasia due to heart murmur detection

(Most people would assume mold exposure but I urge you to keep reading because it gets weird & fast.)

I know this next part is highly controversial but it did give me relief from my pinched nerve. I had seeked care from a chiropractor. Everything was fine initially & then I developed a posture lean probably due to whatever I was fighting. I left him when it had stopped working. I also had cervical neck dystonia during this time (transient) I seeked the opinion of my gp at the time & he said it was pots & got some blood work done. All he told me to do was to take vitamin D3.

The abnormal results are as follows: Hematocrit: 51.4, BUN: 22, sodium: 145, carbon dioxide: 19, a/g: 2.3, vitamin D hydroxy-25: 26.3.

I started on vitamin D3+K2 immediately! I sadly would not get over the diarrhea & fatigue issue for another 17 months. I don’t know how I managed to drag myself to work during this awful time. I was experiencing chronic confusion & acute irritability for about a year. I got a different gp because the previous one hid the rest of my test results, on top of this he was pretty rude. After a simple exam she sent me in for imaging regarding concerns on my coordination/confusion. We ran b1 & it was fine. She also got me in with an ent about 6 months apart with follow up from a neurologist who gave his own opinion piece. 

The results from my scan in December 2022 involving the brain w/out contrast were as follows:

“Impression: The cystic region in the right parietal lobe is consistent with a porencephalic cyst. There is hemosiderin deposition along the anterior margin of this, and this finding is associated with a perinatal hemorrhagic infarct or maybe associated with perinatal congenital hemorrhage.” 

There were also small choroid plexus cyst but I assume everyone has those & they're harmless. This stroke was misdiagnosed for 26 years. 

I also got spinal imaging done with results as follows: Impressions from first series of scans:

“Impression: moderate degenerative changes including multi level moderate severe neural foraminal narrowing. Mild accentuated kyphosis and leftward curvature of the upper thoracic spine.” 

The second series of spinal findings were more accurate as follows:

“Dextroscoliotic curvature of the thoracic spine measured 26 degrees from the superior endplate of T1 to the inferior endplate of T12, additional levoscoliotic curvature of the cervical spine which measures approximately 13 degrees from C2 to T1, marked coronal imbalance with 18.1cm leftward coronal imbalance, & Accentuation of normal thoracic kyphosis.”

I did a second round of blood work in august 2023 after the original in july 2022 & the metabolic panel showed the following: 

Creatinine serum: 1.42, potassium: 3.4, carbon dioxide: 16, Albumin serum: 5.3, A/G ratio 2.3.

In may of 2023 after an uneventful echogram they did a larynx mri with iv contrast with the following result: 

“Imaging findings suggest a right anterior laryngocele versus laryngeal diverticular enlargement.” 

Got in with a neurologist in June of 2023. We ran blood work & did a test for autoimmune encephalitis & paraneoplastic syndromes. All negative except for b12 at 210. He diagnosed a conjugate gaze palsy, unspecified ataxia, & cerebral ischemia. All he could conclude was that my b12 was causing my arm issues at rest & suggested b12 supplements. He suggested going to a spine surgeon which I turned down. He also said my stroke is an enlarged ventricle that puts me at risk for dementia.

To clarify the arm issue at rest, I’ll wake up with my arm in a different position than when I fell asleep & find it in positions that cause the arm to be numb. Even with putting a cushion between the arm & chest I still find it in arm numbing positions. So I reposition the cushion to prevent it from happening. But I still find the arm in different positions. During the day it’s mobile but there is an underlying grip problem.

A Gastro noted arthralgia in my jaw joints with unspecified esophagitis & childhood ibs that was thought to be celiac but that's not the case. I’ve been having arthralgia since moving states in 2017. It has gotten better with d3k2 & b12 especially supplementation.

Other symptoms are occasional feeling of brief difficulty in breathing; this issue also dates back to childhood, bier spots on hands as well as small tan raised spots on fingers. The bier spots will seem dilated in hot weather & I’ll feel a mild skin sensation. (I will have pictures for these.) I do get a heavy feeling in the head when standing up from squatting at work. History of hives in childhood that would occur on the back, history of right arm jerks in childhood followed by jaw spasms in adolescence that lead to arthralgia. 

Saw my geneticist again & we noted quite a few new things like torticollis, history of puking illnesses from childhood, skull asymmetry(plagiocephaly?), deviated septum, mandible bump, & enophthalmos. He thinks hemifacial microsomia but I would be unopposed to alternatives. 

Miscellaneous Carrier for cep290 mutation (maternal), small microduplication on 4th chromosome (paternal) but both have little to do with what's going on. We also did targeted testing for marfan & that was negative in 2019.

maybe I just need support through this-

(50 M) What dose it mean if the CA 19-9 Is 4000

It feels like my muscles, nerves and bones are weakening rapidly. I’m experience neurological and kidney stuff stuff too. I can’t tell where this is coming from. I’m diagnosed sjorgens b. (Never had a lip biopsy), Epstein Barr, Raynauds, mixed connective tissue diease, positive ANA, few bands on a Lyme test, endometriosis, pelvic congestion syndrome, degenerative disc disease, I feel like I’m missing the bigger picture here. Seems like last 6-months though my health has taken a drastic nosedive. I just got a hysterectomy 5 week ago and already have a cyst. My kidney blood work comes back okay but it looks there’s dilation in the veins and blockage in my ureters, I’ve had stones and am peeing blood, lots of flank pain.. my CT scans are saying hydronephrosis. And now it looks like my liver is swollen. My primary care doctor told me I belong in a research facility. Because this isn’t typical for a 31 year old. I’m sure there are others out there like me though. I’m hoping someone can give me some insight.

30/M

Seeking any and all information that I can get. After suspected Wilson's disease (low ceruloplasmin tests) probably ruled out through additional tests (normal copper in 24 urine; low serum copper), my doctor ordered a genetic panel test. Negative for Wilson's but am heterozygous for aceruloplasminemia, an even rarer and less understood disease. Thankfully, I don't have homozygous results, but I have some symptoms. Broadly, my bloodwork indicates ongoing low/below range ceruloplasmin (13 mg/dL); low/below range serum copper (48 micrograms/dL); within range but low ferritin (33 ng/mL); high but within range serum iron (160-190 micrograms/dL); and high trasnferrin saturation (55-60%).

Any thoughts, experiences, advice would be appreciated. After the 24 urine test confirmed that it was probably not Wilson's, I've been taking copper supplements fairly aggressively assuming that this is just a copper deficiency. However, neither ceruloplasmin or serum copper seems to budge.

I don't have wildly obvious symptoms, apart from some months feeling generally off (fatigue, etc.). More recently, I have developed some peripheral neuropathy, but it comes and goes.

Edited to add: I am meeting with a genetic counselor soon. However, it is not clear to me who I should meet with (even what specialty). I am a foreigner living in India, and medical care is readily accessible. I feel, though, given the rarity of this disease, I may need to be ready to propose certain tests or courses of treatment.

Hi! I know it's unlikely anyone will see this. There are SO few of us, but I myself was just searching for the word for WHITE red eye (leukocoria) and I happened upon this brand spanking new wiki of Coats Disease information!! https://eyewiki.org/Coats_Disease I was so excited to find more information and a newer source for Coats' Disease that I ran not walked to tell my mother and I thought maybe, if anyone else sees this, they might like it too. My mother and I both laughed at their "large" 150 patient study. We know that is a small study for medicine but for people with Coats' disease? That is a HUGE number!! There is MAYBE 200,000 people that have it in all of America. Even fewer here in Australia! So any information at all is always appreciated. I'm pretty stoked and hope other people might be too. :)

I’ve been having some really weird and terrible issues with swelling. I just saw a big hot shot doctor for autoimmune stuff and she does not think it’s the cause of my issues. She said she thinks I have capillary leak syndrome. My dad was in and out of the hospital for what looked like cellulitis, but it wasn’t. They couldn’t figure out what was wrong, he was a mess. We also have a lot of aortic ruptures, congenital bone, and congenital heart valve issues. What are the chances that this weird gene could cause capillary leak syndrome? I’m not sure anyone knows the answer to this, but thanks if you do or have any suggestions!

Sign the petition, share, spread awareness. Our future depends on it.

Hi all

37F, 5'2, 45kg

I have a Neurofibromatosis Type 2 - Wishart phenotype (severe) diagnosed in my mid 20s. It's an incurable genetic neurodegenerative condition resulting in deactivation of a tumour suppressing protein, and proliferation of tumours throughout my brain, spine and peripheral nerves. I have lost my hearing totally, experience constant disequilibrium, dysphagia, limb weakness, neuropathy and paresthesia, vision problems, ataxia, and epilepsy. These deficits are caused primarily by nerve conduction problems but also compression of brain stem and spinal nerves due to tumour burden and sinus occlusion causing chronic intracranial hypertension.

So far I have had four schwannoma nerve sheath tumours resected - one intracranial, three peripheral in my trunk/chest. I have also had 8 intracranial meningiomas resected in the last 5 years, two of which were WHO Grade II (high grade - meningiomas only have three grades). Meningiomas in the general pop are usually solitary and mostly WHO Grade I (benign).

I have CNS tumours throughout my brain and whole spine, most of which are believed to be meningiomas based on MRIs which I have every 6 months due to rapid meningioma progression. My MRI reports them as "innumerable" due to constant tumourigenisis. Currently I still have about 30 intracranial meningiomas ranging in size from 9mm to 30mm, as well as some spinal, worst of which is at C3 and causing abnormal cord signal due to compression. All of these tumours continue to grow over time.

My meningiomas are my biggest problem. The NF2 mutation makes them more likely to recur after resection, more likely to produce prolifically, and more likely to be higher grade. There are no specific targeted drugs for these tumours as yet, however I am in Australia and I believe that in the US there are currently trials for a drug called Brigatinib which is a targeted immunotherapy drug being developed specifically for NF2 mutated meningiomas.

I'm interested to know if anyone else here has NF2 and whether you have heard about or trialed Brigatinib, or have heard about or trialed any other drugs targeted at meningiomas? I understand some patients use Bevacizumab which is a immunotherapy drug used in colorectal cancer and has shown some efficacy in suppressing schwannomas, but less so meningiomas.

Any info, empirical studies or even anecdotal experiences would be super helpful to hear - thank you!

🐢 TODAY! 🐢 • 🗡✨️💪 HAPPY GBS | CIDP AWARENESS MONTH! 💪✨️🗡

TODAY is the "CIDP BEACONS" live event! 😘💪❤️🔥 Do not miss this amazing event in support of all GBS and CIDP patients, family, friends and caretakers around the globe.

RSVP today! CIDPBeacons.com (You must RSVP to receive a link to the live stream.)

#gbs #cidp #gbswarrior #cidpwarrior #shiningthroughcidp

I’m sorry in advance that this is likely to be a long one, but there is a lot to understand here and I don’t know what is and isn’t relevant.

The biggest issue I have is this: about 7 years ago I began to develop pain in my shins when walking at speed without wearing my insoles (I’ve had insoles for a while to support my feet, given by podiatrist when I was about 15 to try and support my ankles) this has progressed a lot. About the same time this pain was beginning I was able to walk a 13 mile half marathon, just to give an idea of the progression.

Now I am in pain any time I walk for more than maybe 15 minutes. The pain is not only in my shins but sort of around the top of my knees and the outside of my thighs sort of following the femur. I also get a lot of pain in my back around a couple inches either side of my bellybutton but it ranges in that area.

I have recently seen physio because the pain has been becoming ridiculous. They were pretty useless and didn’t consider most of the points I gave them. They did notice that my calf muscles are very tight and that I have 0 dorsiflexion of one foot (its ability to bend up towards the shin) and minus dorsiflexion in the other. I believe it should be around 13 degree normally. She said this may have been an issue all my life but didn’t say anything that explained why it has suddenly become a huge issue.

She recommended exercises which I’ll admit I haven’t been fantastic at doing because I don’t know if they are actually going to help. When I brought up that I believe I have Hypermobile ehlers danlos syndrome, something I’ve thought for many years she fobbed it off with I might do but. I don’t need another label put on me - it’s me that wants to know!

Anyway she had briefly mentioned that my insoles may need replaced and so I was referred to podiatry where it was noticed that my heels are sinking a bit. I was given new insoles with a wedge added.

On follow up 6 weeks later I was able to say the pain had improved a bit but that is still very much affected everything and that if I wasn’t wearing my shoes and insoles one day then the following day I would feel more pain.

I was then referred once again to a podiatrist who specialises in musckulo- skeletal. I am still waiting to see them. This has been an ongoing process of referrals since August.

I have multiple conditions, including ASD, ADHD, type one diabetes, coeliac disease etc. I have dyspraxia and it was noted when I was a child that I had ‘low muscle tone’ but I have no idea if this was supposed to mean something in particular. I’ve had Hypermobile joints since about 10/11 years old and these have got worse as I’ve got older, now sometimes affecting movement in my hip/pelvis area but not as much as a sublaxion or disslocation.

I have been dealing with an eating disorder for almost ten years now and am tentatively in recovery for this but as a result of it my weight has also increased a lot, which clearly doesn’t help the other issues but my ability to lose weight and gain fitness is also caused by my pain.

I have also noticed that my arm muscles get tired a lot more than they ever used to. I am a crafty person and I find that after only a short while doing most things my forearms begin to feel heavy and tired. I feel like this has to be related to everything with my legs but I really don’t know what this could be. On the other side of this though I do generally get fatigued at times and I have started to get a lot of sore throats especially when I am tired which may be related to the thyroid conditions I was pretty much guaranteed to have by the age of 30- autoimmune conditions like to come in 3s and thyroid issues are the only thing that runs in my family. But I recently learned that the NHS doesn’t diagnose thyroid conditions when the numbers are just a little different they have to be a certain level and so I am just waiting for my bloods to show this.

I don’t sit with my feet flat on the floor ever, usually I sit with just my toes on the floor, I also spend a lot of time with my legs crossed which also means my toes are pointed. I have to actively make my feet sit flat on the ground, they don’t do it naturally, and sitting with my feet flat hurts my back too.

I’m not really able to bend at the knees to crouch down which also doesn’t help my back.

I am sort of at a loss as to what is making this so much worse and also as to what it actually is. I am a pretty good medical googler, I have correctly diagnosed myself at least twice and have caught conditions that doctors haven’t even thought of looking for. Of course, to some this makes me seem like a hypochondriac but I don’t think that’s fair if I’m also known to have been right. Even with my attempts to goggle my symptoms I have struggled to find anything that fits this weird progression and I’m fed up waiting for someone to do something about it. I want to be able to get my fitness and my strength back. I think that because of the muscle tone thing I am probably in a worse fitness level than an average person would be in the same situation but it is really making it hard for me to go out and enjoy things.

I want to ask people for some advice on two fronts: do you have any ideas of why this is suddenly a big thing that is getting worse rapidly? does anyone have experience of anything like this? What could this be, is it ehlers danlos related? The second part is what can I do? Obviously I know this isn’t proper medical advice and that I really need a doctors to help with this stuff but I am so frustrated with the waiting and the constant referrals to other people for them to pass me on again. I need to start fixing this already, I need to be able to walk more and do things and if this is only continuing to get worse then it’s going to be miles worse by the time I get some real help. What can I do? Strapping? Stretches? Should I be trying to force my feet into the right position or is that just making it worse?

I’m just so fed up with it all!!

Hi. Looking to see if anyone out here has a diagnosis of Temple Syndrome (duplication of the 14 chromosome/ maternal)

My son was dx’d at 6weeks. Currently almost 5 and we are in the US.

I have been diagnosed with EED one month ago after biopsy. First symptoms started two months ago. I am looking for other people with EED. Due to how rare this disease is, there is not much information about it or the treatment. Any help would be greatly appreciated!

Diagnosed with Liddles Syndrome. Anyone else out here with Liddles? It’s pretty rare, I think it’s underdiagnosed really, but still rare as it is. I don’t know anyone else who has it.

My health has done a 180 since diagnosis and my doctor told me “You’re going to live a much longer life now” and I just cried…. As a single mom I definitely want to be around as long as possible.

To anyone else struggling to get diagnosed- sending love. I see you.

Hello everyone! I currently have decompensated liver cirrhosis. I’m young and this was totally out of no where. I currently have autoimmune pancreatitis and it was believed to be hepatitis but steroids didn’t work. I had a liver biopsy and with no known answers on why my liver failed they marked this in the biopsy. Any advice? I saw a GI and felt like he didn’t really view it. Said we would probably have to redo it he didn’t like how it was written but said the blood test would let us know. Odd I thought liver biopsy was also key?… can someone interpret this?

Anyone else with a really late diagnosis of Parsonage Turner Syndrome? It took 7 years, soooo many misdiagnosis (MS, Parkinson's, you name it) a wild amount of specialists and hundreds of thousands in therapy, and I finally got a diagnosis about 2 years ago.

I know there's a pretty good recovery rate for people diagnosed and managed quickly, but unfortunately that hasn't been my case. I've been told there's not much hope for me other than with NSAIDs to manage the pain. And of course, the only medication I appear to have an allergy to is this exact medication. And not a mild allergy, the kind where blood pours from my nose constantly so it's not something I can really push through.

Physical movement and specific exercises can help when things aren't flared up, but does anyone have any advice on pain management during flare-ups?

Note - I move country far more often than I'd like, and I've just returned to my home country and will be establishing a medical team soon, I'm just in the middle of a pretty severe flareup and would love any guidance if someone happens to come across this post!

Thank you!

So many people who are chronically ill feel lost, express being fedup, are looking for answers to pain, loneliness, diagnosis, etc.

I do not have answers for anyone's specific issue. However, I can offer what I believe is one way to Comfort, Heal, Recreate. Music.

I'm always being asked, "How do you get through each day?" This is MY answer. My music. Wherever I am, I have my music playing. At home, on the road, in doctor offices. It takes me to better places and motivates me to keep recreating my life everyday, even in the midst of a rare, incurable disease.

Today, I give you the gift of music in the form of a Spotify playlist I created for all of us. The link is below. If you don't have Spotify, look it up on your app store or computer. I hope you enjoy this optimistic list of uplifting instrumental music.

Stay strong 💪 Dream free ✨️

"Getting to the Other Side" https://open.spotify.com/playlist/5F9fUwdE106odLEJk4ac0k?si=7awzEjoHTRSRsq3kyDOPjA

This is a phenomenal article about the power of music and how it helps people who have serious health conditions:

https://theconversation.com/how-music-heals-us-even-when-its-sad-by-a-neuroscientist-leading-a-new-study-of-musical-therapy-214924

Hello everyone! I'm a 63-year-old male seeking guidance. I was diagnosed with mitochondrial depletion syndrome by a Mayo Clinic researcher in 2021.

My case is extremely unique in that I have a depletion syndrome which manifests in myopathy similar, but not identical, to TK2. The catch is that I do not have any of the known clinical genes associated with TK2 or any condition that would predispose me to this rare condition.

There is no familial history looking back several generations of such a disease.

I have had:

• Complete nuclear and mitochondrial genome sequencing
• Two separate sequencings looking exclusively at mitochondrial pathologies, limb-girdle muscular dystrophies, and mitochondrial DNA depletion
• Muscle biopsy (Mayo used this tissue to discover the depletion).

Unfortunately, the Mayo researcher, who was doing the work pro bono, has moved on and the current staff is not interested since no mutation was located.

My current neurologist, who works with the MDA, believes I could be the oldest living adult in the U.S. with this type of myopathic depletion syndrome. Despite this, I have not found any researchers or doctors curious in helping to try an uncover the 'why' even if it is for posterity's sake.

I'm seeking any ideas on finding specialists or resources that could help nail down a diagnosis and or treatment for my rare condition.

I am a relatively new member to this community. I am not a doctor. I am a 57 year old male with severe, advanced CIDP, stage 5. It is a rare, incurable neurological disease. 11 years diagnosed. I have lost a 40+ year career as a professional musical theatre choreographer because within the last two years, I became completely disabled. Can't walk, can't dance, can't drive and in a wheelchair. I am now recreating my life as a writer - horror and thriller stories.

I know first hand how hard a chronic illness can be. Waking up each day, never knowing what awaits. The endless stream of symptoms, meds, doctors and unanswered questions. We feel completely out of control at times. There is no longer a "norm", only a "now".

However, the one thing we do have absolute control over is our ATTITUDE. It can make or break us and those around us. I work on my attitude every day and with that, I try to find the laughter and humor even in the worst of situations and in myself.

Here is a great article from the Mayo Clinic on the healing power of laughter. I hope even just one person finds it enlightening and can laugh today. And the next day. And the next.

Feel free to comment or add your ideas. 💡

Stay strong 💪 Laugh free 😂

Stress relief from laughter? It's no joke! https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456

Hi everyone, I am going to try to keep this as brief as I can, while including enough information. Over the past two years, I have seen two well respected rheumatologists in major hospitals in Boston, have had bloodwork done multiple times showing nothing, Xrays showing no inflammation and even an MRI of the hand where this all started showing no inflammation, other than mild tenosynovitis higher up in my arm.

I am hoping for guidance or suggestions based on my symptom progression below. I will say that when I have a symptom, it starts in one joint or soft tissue body part, comes on hard, bilaterally and painfully. After different amount of time for each symptom, it mostly goes away, leaving a noticeable problem to me, but a manageable one. One side is usually worse than the other.

Next step is a Neurologist, but here is my symptom background that I provided to PCP and Rheumatologists:

April 2022 – Ear pain with horrible tinnitus. Could not sleep, felt elevation changes while driving. I was previously a person who ran hot but then felt very cold despite being in warm weather. Throat pain around adam's apple and hawking up white stuff consistently.

July 2022 – Middle fingers seemingly swell at proximal joint and is painful for a month+. Shortly thereafter ring fingers at same joint.

August 2022 – Hip joints, right in particular, clicking and pain when walking for a month+. Toes hurt.

Fall 2022 – Eyes become painful and sight becomes blurry, especially up close or when tracking things as they move. This lasted 3+ months of pain. Pain went away but cannot see up close or track things that are moving well.

December 2022 – Some knee pain and feeling of being off balance, like on a ship listing to the right. Some right heel drop when walking. Like most symptoms, it is gone but I do still get this in a very minor way once in a while.

January 2022 – Pain at pointer finger on right hand proximal joint. Pain in coccyx and low spine. Can barely sit on coccyx. This lasts for 3-4 weeks. Lower back pain as well as if I had hurt myself lifting. Other than the visible finger changes, these almost never bother me anymore.

February 2023 – Nodules above wrist grow. Right one was horrible for almost a year. Now does not hurt, just looks bigger.

July 2023 – Balls of feet also felt larger and painful, I could feel when I planted them on the ground. Same with underside of knuckles on hands. Right side worse for both.

August 2023 – Ankles and feet hurt. Can feel nodule on left mid-foot. Other areas bothered me as well for a short time. Ankles was extremely painful, especially in my hockey skates. Sudden onset of pain in lower abdomen leading to constipation and thin stools. Pain went away, but cannot do anything but thing stools since then.

September 2023 – bilateral and painful on tips of kneecaps. Right pinky popped and it looks deformed. Winded easily for a few weeks.

October 2023 – Right eyelid not opening to normally. Feeling of catching and fluttering. Some distal knuckle pain appears, worst where nodules on right middle and ring finger appeared. Eyes blurrier when awakening.

November 2023 – Lumps appear on achilles tendons with pain.

December 2023 – Dry scabs appear on mostly left cheek around jaw line. Most obvious and red after shaving. I have never even had acne issues.

February 2024 – Painful elbow tips appear. Lasts for a few weeks.

March 2024 – Painful knees at top of shin bone where it meets knee.

April 2024 – Warm tingling feeling in parts of body precedes itching, pain and then numbness. I am now very cold for first time since this started, extremities in particular. Fingers, toes, tip of nose, etc are the worst. I have different parts of my skin impacted where the result is partial numbness to touch and temperature. For a few days when this started, I also woke up with tingling down legs and in feet at night and waking up. This is progressing to different skin areas almost daily now.

I am open to any guidance. Last time I got no help from doctors, reddit solved my problem (biceps tendonitis) in a few weeks. Literally any advice, guidance or direction is so appreciated - even if it is "try this other reddit form."

Ive been to every type of doctor and the only thing close to an answer was this bump according to my ent. It might be leftover bacteria from an odontogentic sinus infection from a few months ago. I got an adjacent tooth pulled and my sinuses cleared up but I still feel sick and inflmaed, just without the nasal problems..

Can a packet of bacteria this small cause a chronic infection reaction? The tooth next to it looks fine so it's mostly likely not coming from it..

17 female, 5'5, 90 pounds, USA, prozac, no drug use, no smoking, numbness for my whole life, neuropathy feeling

17 year old having these symptoms since I was 4 years old, slowly getting worse over time. STARTED with trouble swollowing and slight numbness of the mouth

neuropathy like sensation no tingling just NUMBNESS making it hard to eat and stuff like that because I CANT feel the food in my mouth, especially in the mouth, fingetips, and and whole body in general. like when I pee I cant feel it come out and years ago i had like sharp pains on my fingertips that is completely numb now. 10 years ago i had like sharp pain where i pee and its the exact feeling.

spinal tap normal. no autoimmune disorders, mri and nerve conduction tests normal, neuro cannot find anything, symptoms started when I was super young like 4 years old, facial and body numbness for years, slowly getting worse.

no endocrinology issues, no vitamin issues, no asthma and allergy issues at least of what i know of, have slight ashtma issues, nothing else can be found. other than neuro said I was in contact with lyme disease in the past before. oTHER than that, nothing else is found and neuro dosent think its lyme causing my symptoms and DOSENT think its related to nerve problems. Another neuro cant find anything.

RECENTLY just found out I have mycroplasma pheniume which causing my trouble breathing probably but like dosent cause numbness plus I HAD symptoms of it when I was 4 like the numbness. I DONT know what to do at this point...

Hello. I'm here on a limb. My brother has given up on getting a dignosis but maybe someone here has heard of it? So for years we thought he had mastocytosis. Suffering from anaphylaxis due to stress symptoms, ever evolving allergies and so on. Then a bone marrow analysis was done and technically the doctors said its not mastocytosis but they see there's clearly something wrong with the mast-cells. He's got early onset osteoperosis (had his first hip-surgery at 20/ putting off his second / his hand looks like swiss cheese on the rongten) and issues with his gut which in turn influence the triggering of stress and therefore anaphylactic reactions. Anyone heard of something like that? Ps: English is not my first language.

She was diagnosed with both MOGAD and Chronic Epstein Barr, was tested a lot till that point, she has seizures cus of this also. They say they cant treat one without exasperating the other. Gave her 2-5 years.

Ive reached out by email to several people whove written studies about one or the other, have not found anything documented about someone having both of these diagnosis and not gotten responses. Just posting in hopes people will remember “MOGAD Myelin oligodendrocyte glycoprotein” and “Chronic Epstein-barr” and just keep an out for what you see.