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10987654321 (@10987654321)

Help me please only 27!!!

Brain & Nervous System | Last Active: Apr 2, 2021 | Replies (28)

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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.

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Replies to "I’ve been to upmc Pittsburgh allegheny general and heritage valley Pittsburgh suburb I was denied Cleveland..."

@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?

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