Mayo Clinic / John’s-Hopkins - anyone receiving treatment at either?

I have been to two separate hospitals and have been seen by 3 doctors. The first hospital and doctor had told me that I have Neuropathy in my right ankle and left it at that. The second hospital had performed an ultrasound and said the same thing as the first doctor. I just couldn't handle the pain and I went back again to the last hospital and was ironically seen by the same doctor I had seen the last time I was there and received the same test only now this guy is telling me that I do not have Neuropathy and after a whole year of going through so much pain and stress he comes back and tells me that I have a server Blood Clot in my Main Artery and that is the reason why I am in so much pain due to where it is located and he says to make an appointment to be seen by a specialist and discharged me. He gave me medication only to find out that I am allergic to the blood pressure meds and my calves have swelled up to be the size of my thighs and so I have stopped taking those. No question for anyone. If I only have a blood clot why is it effecting my ankle and foot so bad to the point of me not being able to actually walk correctly without having to go through so much pain? The pain is right at the ankle on only one side not the whole foot. I can not get up and just start walking without having to balance myself and take very very slow and calculated steps in order for me not to either fall or have the feeling like that ankle is going to break. This I believe could have all been taken care of and would have been healed by now if these two doctors would have actually paid attention and actually looked at everything from the tests they performed and actually looked at the films because I can understand if just the one doctor missed diagnosed me but to have two doctors in two different hospitals miss that big black dot and not only miss it but to have the same doctor in the same hospital perform the same test only two weeks after the first testing and now tells me that I have a Server Blood Clot in my Main Artery that is actually blocking the flow of blood to both of my lower extremities due to the fact that it is located right at the base of the Artery where it splits going to both legs and you some how missed seeing it and then putting me in the danger of having it there and me continuing to perform the work that I do and me not knowing just how much I could have and still can be in danger of having this thing come attached and travel to my head or lungs and kill me. How does that get missed and by the same doctor twice. Only thing that saved me and have him redo the Altra Sound was the fact that both of my legs were so swollen and red that he had to do the test over again. I will there was something that I could do to help the next person not to be seen by this hospital or that doctor. They could have been treating this for over a year now and more than likely I would not be in so much pain and would be able to walk normal by now. Sorry for venting but enough is enough already.
I have stopped taking any blood pressure medication they want me to take until the swelling and my legs go back to normal. I am taking the blood thinners they prescribed along with the shots each morning just trying to figure out if those will work or will I have to be operated on to remove it or to put in a stint in. Something has to happen soon. I hope...
Thank you for your feedback and over looking my venting here.

I am a patient at the Mayo Clinic in PHX. I have been diagnosed with AntiMag Neuropathy and Waldenstom's. I still have a consult scheduled with a Neurologist there before a treatment decision will be made. Best of luck...I am putting my faith in their expertise.

After seeing multiple specialists and undergoing all possible tests for over 2 years showed no neuropathy . Still my PCP thinks it’s neuropathy and has put me on Lyrica. I even saw specialist in John’s Hopkins which the insurance didn’t cover . They repeated almost all tests and did more and concluded it’s not Neuropathy. But they suggested that I continue medication which is not helping me one bit. The only thing they suggested is meditation in addition to medication!

Sorry for that disappointing outcome at JH. Another dead end. Did the diagnosis conversation ever mention CIDP? Thanks

@allessio77
I hope you find answers. My CIDP may be stabilized with the drug I’m getting in a trial, riliprubart. But my fatigue is not improving at all. Thanks for the reply.

@dinosoke
I can tell you are very frustrated and disheartened by all that you have gone through. It leads to lack of confidence in medicine, which is depressing. I hope you get a resolution soon, blood clots are serious. Thanks for sharing.

I have CRPS and had my case accepted by a physician at JH Blaustein Pain Clinic. He prescribed a new medication and discussed a possible procedure, too. Additionally, he suggested that I meet with an Abbott rep to have my DRG reprogrammed.
I think it was time for a reprogramming because I’ve had some relief, but it could also partly be the new Rx, but it’s such a low dose, I’m not sure. I was frustrated that the doctor didn’t explain things to be about how the medication or capsaicin worked and the majority of the cost was with the resident. ALSO, because his office is in the medical center/hospital, my insurance requires me to pay $125 facility fee! Unbelievable! You must also pay for parking. I’m not returning, at this point I’ll just rely on my DRG and see another specialist where I’m. Or paying $125 facility fee in addition to my specialist copay.

One more thing, the doctors at Blaustein Pain Clinic review your medical history before accepting new patients. It took me several months and phone calls to find out if I would be taken on as a patient.

@bluevirgo
Thanks for the info. Did they help?

@bluevirgo
Hey. I replied to your follow up and now see that things didn’t work out, sorry