Help me please only 27!!!

Hello my brain is getting so bad I can barely talk. I’m very confused. Not myself at all. Now my limbs that are numb and limp are going purple and freezing cold... I’m wondering if blood is not flowing right or something.

Also, this all happened in end of April. Makes me concerned.

I’ve had:

EKG
EEG
Mris (brain with and without contrast)
Mri (spine)
Eye exam
Echo
Holter
Lumbar puncture
100 blood tests at least

No one helps me I keep getting passed around. I can’t go to mayo or Cleveland bc of insurance i was rejected twice

I can barely talk now I’m lightheaded my whole body is numb. Cold limp...

I feel like I’m going to pass out all day. I think blood is not flowing right as My limbs are cold/hollow feeling/numb and now turning purple and crusty.

Could this be vascular? Blood not flowing to my head/stuff? I wonder if I had Covid I know that can cause inflammatory vasculitis??? I was completely fine before then and everything is rapidly getting worse.

PS UPDATE I am soooooo much worse then when I joined here. I’ve been to a bunch of drs and specialists no one helps me. Now I can barely walk talk think. I spend all day on couch. I feel like a vegetable. My hollow numb limbs are now cold/purple. I think this is circulatory. Yet no one helps me even with pictures of cold purple extreme limbs. My eyes are going blurry my hearing I can barely eat.

Please please pray for me. Please help
Me. This is horrific. I can barely even communicate. Is this vascular?!?? No one helps me or knows. I think this might kill me.... idk what to do.

I can try my head is now child like almost I can barely talk think.... I can’t read a book ( I have 3 graduate degrees). I had a sinus surgery in March. I was ok after. They gave me pills (3 weeks Ativan while I healed) I quit cold felt sick went to hospital ( I never took anything like this before didn’t know why I felt sick when I quit) anyway, they did tests said I was fine. I went back two days later in April bc I felt not fine at all...... tachycardia ect bad. They did blood draw and my right arm started going numb/cold/tingly. This spread throughout my body overnight. Hospital drs told me anxiety gave me who the hell knows what for weeks... made me more sick. Never got better.

Now my head is so bad I had to quit working. This weaknesss has spread I can barely walk work function. I’ve had multiple mris eeg ekg blood tests lumbar echo. Neurology laughs at me bc my mri is ok. And no one else helps me. I can barely talk now. My head pressure is terrible. My limbs are cold and numb (now turning purple and crusty).

I think this happened April 29th in hospital. I never got better. I’ve been progressively getting soooo bad. I went from hikes and driving and working to sitting on couch like vegetable barely able to eat with numb cold limbs and severe lightheadedness and confusion blurry eyes and diminished heading/ringing.

Idk I’d I had Covid that triggered something??? Idk what else would have done this? And why it keeps getting worse?

I was never allowed to test for Covid rather I was told I was nuts and anxiety.

I’m sooo bad. I’m not exaggerating f. I’m not myself at all. I can’t talk think. I can’t function. I’m not living life at all.

I hope this helps. Please pray for me.

Hello @10987654321. I am very sorry to hear of your declining health and to hear that you feel no one is able or willing to help you identify what is going on. I am sure that makes you feel very nervous as you continue to decline.

As most on here, I am not a medical provider. I do, however, have great concern over both your worsening symptoms as well as the fear I can read in your posts.

Can I start by asking you where (about) you are located and what hospital(s) you've been to for care?

I’ve been to upmc Pittsburgh allegheny general and heritage valley Pittsburgh suburb

I was denied Cleveland clinic twice

Vascular told me not vascular (after I emailed him photos of my legs turning purple and crusty and my hands and legs turning ice cold) told me call neurology

Rheumatology told me call neurology (after my Ana came back 1:40
Positive nuclear speckled)

Neurology hung up on me told me I already saw many neurologists

Cardiology told me call primary care

Primary care told me call Cleveland (even after I told them they just denied me)

My mom just hired a private concierge dr to try to help me but I’m worried I’m too few gone almost a year without treatment I’m really bad now my cognitive is bad my personality gone my stamina gone my physical body gone my hair is falling out and my looks are gone I can’t work walk think function I’m sick when I eat sleep like this is a nightmare

I find it odd I was ok before April 2020

I also find it odd my fiancé’s health is bad now he was diagnosed with lupus idk if it’s coincidence or not

Thanks for your concern I think having young woman and “nuts” in chart (due to drs that did not believe me in beginning at all as I was rapidly declining”. It’s sad my e primary cart dr knew me for years it’s so obvious something is wrong he just kept telling me to take more anxiety pills...

It’s a shame that young people woman and minorities (im not but I’ve seen that) are still treated so badly in this day and age.... I’m beginning to realize how western medicine doesn’t care and lets people fall through cracks unless you fit their box and prescription pad. This is definitely a negligent/malpractice case or future wrongful death for many different people at this point (I went to law school before I deteriorated) 🙁 sigh anyway thanks for your concern.

@10987654321 With all that is the matter with you I think this would be a good Mayo visit . Mayo is a research hospital and will keep looking till they find out the problem. Is it possible for you to go to Mayo try to get an appointment . DO you have a patient advocate for yourself? This can be a family friend of someone else . I found a professional advocacy here is there number 8005325279 also if it is a non profit advocacy they are free of charge . Good luck may God be with you and heal you

Hello @10987654321,

After I read this post, I went to your profile and read all of your posts since you joined Connect last year. You have certainly had a tumultuous time getting help for your many symptoms. As you already know, on Connect, we are patients like yourself. We are not medical professionals and therefore we cannot diagnose your problem.

However, there were two things in your posts that I found interesting: one was that these symptoms started after your nasal surgery and the second was that your fiancee became ill with Lupus around the same time.

As I think about these two things I'm wondering if there have been any significant environmental changes in your life. Something like moving to a new neighborhood, being exposed to toxins, drinking well water that might be contaminated, etc. I'm also wondering about your nasal surgery. Have you been to see an infectious disease specialist? Could there be some correlation between the surgery and your current health problems?

Finally, since many women are told that our problems are caused by emotional or psychiatric problems, have you considered getting a work-up from a neuropsychologist? This type of psychologist would talk to you and also perform neurological testing. In this way, you would understand what neurological problems might exist separate from the physical. Then if you have proof that there are no serious psychological problems you can take that to your doctors to prove that you need to be treated by a medical professional.

In any case, the frustration you are facing certainly indicates that a trained therapist/counselor might be able to help you deal with the frustration of this problem and perhaps offer you some new ways to approach this.

Does this sound like something you might consider?

@10987654321
This suggestion by Teresa @hopeful33250 makes a ton of sense to me. The symptoms as you describe them sound so diverse and kind of random, and being in your twenties and formerly healthy prior to your surgery last April, it really does sound like you might have "caught" something very bad. One thing you mentioned is having been diagnosed with sensory polyneuropathy. Who diagnosed that and what tests (if any) were done to arrive at that conclusion? Even if you have developed neuropathy, that would not begin to explain all else that is going on. You have mentioned covid (and I recall Jennifer @jenniferhunter suggesting that back in August as well). I am wondering if an infectious disease doctor would be of service to you in figuring this out? (I know, you have already seen practically every doctor known to man, but really, this might be the right direction to steer toward).

Oh my goodness, I feel so much compassion for you in this! Try to remain calm and perhaps reassess the direction you have been pursuing, I believe Teresa is on to something. Best to you, Hank

@10987654321-Hello. Your situation sound very eerily similar to mine. I want to first share my empathy and let you know this is not in your head or anxiety.
-What was the exact sinus surgery you had? The areas and what was it for?
-Did your ENT ever bring up the possibility of a condition ENS -Empty Nose Syndrome? Most likely not, as it is an iatrogenic caused condition from their surgeries that they will not admit to.
-This has happened to many people following a sinus surgery when they are told they are “healing fine”
-It is very coming then for them to be referred to multiple different specialists for the symptoms they are presenting with.
-I will supply you w/ a link here. I’m not sure it shows up with the hyperlink to click on.
-You can read it and see if this sounds like anything you are/have been experiencing since sinus surgery.

Apologies-here is the link as I mentioned above....

ENSPathophysiologyv_09.2016.pdf