Grady’s senior picture. She liked the other one where her mouth was closed.
Grady’s senior picture. She liked the other one where her mouth was closed.
Still undiagnosed after 1 year and bed bound
I typically would never make a post like this, but I am desperate at this point for answers or any clue as to what is going on or who I should see. I know this post is long, so for anyone that does take the time to read it, I appreciate you!
Following what seemed to be a strange bout of fatigue and viral illness last year, I developed serious GI issues (losing 27 lbs in the span of a few months), chronic pain in joints, extremities and feet, severe fatigue, headache & chronically elevated WBC. After 5 months of illness, I had what seemed to be a partial recovery and thought I was headed on the up and up! I got another virus (likely covid), and proceeded to rapidly develop debilitating neuro symptoms 3 weeks into the viral course. The first symptoms were more vague such as tingling in extremities, balance issues, brain fog, Lightheadedness. By the following week, I was unable to walk, lift up a glass of water to my mouth and was admitted to the hospital with dehydration & hypoglycemia. I was discharged from the hospital a few days later after a partial recovery and negative CT and MRI. Then started the medical gaslighting... After asking me to see psychiatry the doctor said “you can follow up with neuro if you wish to continue to persue this”…as if anyone would be ok with NOT following up on something like this. Not long after I was discharged, my symptoms returned with increasing severity (weakness, insomnia, numbness/tingling, blurry vision, light & sound sensitivity, GI issues, pain, hyper-reflexive, muscle twitching), new symptoms developed (heat intolerance, palpitations, unusual sweating, fevers, tachycardia, tinnitus, eye pain, difficulty with swallowing, speaking & coordination, sensory overload) and I became bed bound once more. I was given steroids for suspected thyroiditis (+antibodies), which initially gave some improvement, but to my undying bad luck - I got another virus from my caretaker. All of my hard won improvement down the drain and I proceeded to develop worsening and new symptoms despite the medication. I am in my bed for likely 22 hours per day and cannot tolerate opening my window, leaving my apartment, any temperature above 75 degrees, or even watching tv or sitting for an extended period of time. I have been passed around specialists like a hot potato this past year - hematology, GI, rheumatology & neuro. I was denied by infectious disease (because apparently having intermittent diarrhea meant I needed to see GI only...), covid clinic (doesn’t work with neuro patients) and cannot get into see endocrinologist until December. I wish you all rest, peace, and that your journey be as gentle as it can be.
Undiagnosed neuropathic pain.
I turned 26 this year and have been suffering from chronic pain since I was around 19
Lots and back and forth with multiple specialists and doctors appointments has eventually lead me to a diagnosis for my hip pain - I have hip dysplasia that has somehow gone un-diagnosed since birth.. I have been told I need to have PAO surgery to correct this.
However, alongside this hip pain I have been suffering from many neurological symptoms which seems to have been swept under the rug since my DHD diagnosis. I am still chronically ill underneath my hip pain and no one seems to be doing anything about it.
My nuerological symptoms include the following:
- Neuropathic pain in my legs, arms, shoulders
- Complete numbness/change of sensation in my shoulder blades and between T7-T12
- Numbness that radiates down my left leg
- Muscle spasms/ spacsticity in legs
- Bladder issues
- Chronic fatigue
- Balance issues
- Cognitive issues such as thinking and concentrating
- Occassional blurred vision/ vision changes
I have been seen by and dismissed by numberous doctors and consultants, no one can seem to figure out what is wrong with me. Some of them have actually accused me of making my symptoms up.
I have seen 2x Rheumatologists that investigated Arthrtitis and Lupus, both concluded that there was nothing wrong with me at all whatsoever.. I have a positive ANA and Anti-dsDNA but still no diagnosis. Discharged by both of them with no further action.
I am currently under the care of an Orthopaedic Surgeon (for my hip) who seems to think my symptoms point toward Fibromyalgia but obviously this would be diagnosed by a rheumatologist and I have already been discharged by two.
I am currently on a waiting list to see a neurologist. I have been on this waiting list since May and I am lead to believe I will be waiting quite a few months yet.
I feel incredibly alone in my journey. Everyone I know who is my age have no idea what it is like to deal with chronic pain, let alone the burden of an undiagnosed illness. Every time I attempt to talk to anyone about my ailments, people are dismissive, don’t understand or are simply uninterested.
Can anyone offer any advice ? I feel hopeless. I have no support. 😢
#ChronicPain #DevelopmentalDysplasiaOfTheHip #DegenerativeDiscDisease #Fibromyalgia #MultipleSclerosis #MyalgicEncephalomyelitis #ChronicIllness #Migraine #Lupus #Arthritis #CervicalSpondylosis #AnkylosingSpondylitis #Neuropathy #PeripheralNeuropathy #AutoimmuneDisease #BackPain #ComplexRegionalPainSyndrome #Undiagnosed #RheumatoidArthritis #sjogrens
I had a follow-up with the neurologist today and since all the tests have come back normal he has no answers. I mentioned checking my ferritin and he brush it off. Suggested my primary care doctor run an iron panel. I mentioned pernicious anemia and he brushed that off as my b12 level is normal. I mentioned Ehlers-Danlos and he brushed that off. He agreed it may be fibromyalgia. He asked me to have my psychiatrist switch me from lexipro to Cymbalta to help manage the pain and my anxiety. I don't know what do to now. I have needle like pain throughout my body. Burning pain in the soles of both feet. I have muscle cramps and spasms in both legs, ankles, and feet. I have heartburn, bruise easy, have hot and cold flashes.
In the last 2 weeks the neurologist/neuromuscular muscular dr I see did an EMG and yesterday I had a brain MRI. Both had normal results. I've had a whole long list of blood and urine tests done and the only thing that came back not normal is my ANA. The rheumatologist who ordered that test said it's because of my hashimotos disease, which actually caused me to have my thyroid removed last year. I know several people have suggested I may have Ehlers-Danlos and I will discuss this with my Dr at my appointment next week. I have chronic pain throughout my body, the worst is in both feet. I have muscle cramps, needle pain, and burning pain. I also have gluten intolerance and I'm allergic to dairy.
Can anyone suggest things I should discuss with my Dr? Questions I should ask?
It has taken 6 years
I became disabled at 16 from something that has yet to be diagnosed.
5 years ago, I was referred to a head doctor at a Children's hospital. This doctor failed me time and time again. He sent me through rigorous treatments that did nothing as we didn't know what the cause was. He sent me to a hypnotist, outpatient psychiatric treatment, physical therapy, and a few other things. I met with a team of 6 people for chronic pain management and they did nothing.
4 years ago I complained of vision loss in one eye and they played it off as nothing.
3 years ago I attempted to start university. Half way through, covid hit and I was forced to drop out. At that time my health was also worsening.
1 year ago, I bought myself a wheelchair so I could be somewhat independent.
This year, after fighting for 6 years, I switched to a new doctor who got me on Cymbalta for my pain, referrals to 4 specialists, and antinausea medication that actually works.
2 weeks from now, I will be meeting with a neurologist who interned at the Mayo clinic. In 2 weeks, I'll be closer to a diagnosis than I've ever been.
When hydrotherapy takes you into a 6 hour E.R. visit! Yep, no more therapy in heated water.
So, my hydrotherapy that I wanted so long turned out to be a bit of a physical nightmare. I think I had 6 sessions so far. Five in the heated tank and one I pushed them for when the heat wasn’t working (cold) water. Yes, the cold was the best for my body as I thought it would be. Out of six sessions. Fifty percent of them I went in on a rollator/cane and came out the same way. Fifty percent of them left me unable to walk at all and required a wheelchair to leave. Two times while in the tank my body went into major immediate symptoms that required the tank to be drained and getting me out right now. Last week, my session ended abruptly requiring the therapist to call for help and a wheelchair to get me to the emergency room immediately. Six hours later I was on my way home.
The bad news: Each hydrotherapy session in heated water quite literally felt like it tortured my body. Not just for the session but for the rest of the day and two to three days afterwards. Then, it was time to go again and do it all over. I’ve been telling my neurologist for the entire time that my body is suffering immensely with heat/humidity!! I KNOW. I know because I live in a home without a/c or central air, and the summer’s that I’ve lived for my whole life are now intolerable in every way. Why is my voice not heard?
The good news: I don’t have a brain tumor (they did a ct scan), not that I thought I did. I didn’t have a stroke.
The e.r. Dept wants the doc to continue looking at ms and autoimmune illnesses. She also said that the spine stimulator in my body that I’m currently not using NEEDS to be removed. I’ve nobody to do that and who’s going to pay for it?
Now, the therapy department informed me that they will not allow me to continue hydrotherapy at all. They believe that something is attacking my nerves. Umm 🤔 yes, I believe that as well! I feel like my doc does not listen to me at all.
It’s all ground or machine therapy from here on out. This will be so challenging as well seeing how my body can only walk 15-20 minutes max before my feet fold under, the numbness, pain and burning take over 2/3 of my body and I become unable to walk no matter if I’m using a rollator or not. I keep having vision episodes, facial numbing, head tingling and on and in it goes, along with limbs full of numbness and weakness the pain is severe and it is daily.
Today, I’ve therapy in the afternoon, then it’s my sleep deprived eeg in the morning. Wow, what fun I’m going to have in the next 24 hours (my body), NOT! How I’m going to stay awake is the question of the day? Oh hell. 😬 Wish me luck you beautiful people!💕
#MightyTogether #Undiagnosed #CheckInWithMe #MultipleHealthChallenges
Hi! I'm eb29! I'm currently dealing with some unknown health issues. It all started with a gastritis flare-up and created a domino effect of other symptoms. Back pain which began in my left shoulder, but can radiate to my clavicles. Arthritis in my right shoulder and my heart races causing me to become weak and tired at times. I just hope this community can give me some relief because I feel like I'm alone. #Undiagnosed #Depression #chronic Gastritis