March 12, 2022 at 9:50 pm
Im on the Nyc Long island Border. Been going to Manhattan. I know the heavy hitters…you cant ask them anything, show them anything, suggest, question, they r tired, many have left, have to pick up pt. overflow after resignations, no new hires. If I try to make appt w new doc, facility, they look at the voluminous records and say stay where you were. Cant see anyone else in that original group, except the doc that took over for him, that is director, that was doing research, lecturing around country, publishing books, and now he has to go back to seeing pts w diseases that new treatments have evolved but he has not. I have zoomed in LA, COE, have other ideas, protocols, cant do it from there. They were very empathetic with the situation of rigidity.
zip 11364March 12, 2022 at 4:39 pm
Yes , so kind, articulate, brilliant, Know all those avenues possible. BUT CANT GET A DOC TO GET ONBOARD IN NYC, EVEN AT CENTER OF EXCELLENCE. iVIG, steroids, plasmapheresis. If you know of anyone doing more or what you suggested, IN NY, let me know. I cant get those RX from anyone that is unwilling, hesitant,uninformed, or just tired of doing this. My 2 best named as ” excellent” cidpgbs docs here when I was first diagnosed, Gone.March 12, 2022 at 4:30 pm
I have CIDP..could be more lost. SorryMarch 12, 2022 at 3:55 pm
Thank you, way above my pay grade for comprehension..
I would hope docs know better, read new studies,
but I guess the point was with so many variables, types, diagnostic interpretations, treatments,meverybody’s immune system being different, and no known definitive cause of onset, docs are doing best guess and wait n see.
They should just say that, ” no straight answer “. ? I am ignored .March 12, 2022 at 3:19 pm
So who do I see for that ? Orthotist. I can walk, just don’t have balance, need walker, can only walk short distances, like in the house since I got covid.
I posted a new topic today, on general forum. Topics ” Helps Cidp exacerbation
post covid 19″. Can you check that out ? I would be so grateful for you even
having the patience to do so. I have read your story since I joined this group,
and read history of your journey. I can recite all the protocols, not that I know which is beneficial to me at this point, as I cant get a doc at a Center of excellence, that are just not so excellent here anymore since covid killed this city TO LISTEN TO ME ! I live alone am on my own, responsible for 96 yr old mom post stroke 5 yrs. live in help, constant stress, she is all I have though.
Friends slowly disappeared after covid. My post elaborates. God Bless you.
You have the strength mentally I pray for.🙏🏼March 12, 2022 at 2:30 pm
Open one page, says nothing really ? Am I doing something wrong ?March 12, 2022 at 12:31 pm
Sorry if I sound like an idiot. I thought AFO was for foot drop ? I post new topic today on post covid cidp exac. etc. My docs, if you trad my post seem to have tunnel vision, not to mention the complete lack of interdisciplinary communication.Had afo only when in was live in rehab with foot drop..never suggested for balance, just walker, cane. I have read your story. You are an amazing person and your tenacity is an inspiration to me and many here I have read about.
Thank YouJanuary 10, 2021 at 9:57 am
Don’t know who your neuro is,but fatigue is a hallmark
of the disease process. (Back pain can be tiring of course.) Spine is CNS central nervous system, by definition this is peripheral nervous system, peripheral nerves. The prednisone helped fatigue and back pain , because steroids give one more energy, that’s why they are illegal in sports, and its a powerful anti inflammatory.
Everyone seems to be affected differently, and not sure
from what I read here, CIDP is the correct diagnosis, for many posts I have read. I am in the U.S.
and diagnosis, treatments, symptoms defined for Cidp in
Australia, for instance, seems to be completely different than here. I am more confused and bewildered
since coming on this site and reading all the different cases, treatments, scenarios and outcomes, than before.
Thank you for sharing.January 9, 2021 at 6:30 pm
Did you go into 50mg prednisone of titrate up in 10 mg doses ? I am 110 lbs. , i think weight matters ? Did you have side affects and in what way did it help ?
Do you know about pulsing corticosteroids ?
Ive seen that many places, not sure if its iv or what the pulsing means…take infusion then stop, then start ?
ThanksJanuary 9, 2021 at 8:15 am
Yes, thank you, i understand, just more curious
why it is manifesting as tightness, when that was not
a predominant feature for me in my lower leg in the
5 ish yrs I have had this, it was muscle weakness.
I have read elsewhere that tightness is sometimes a feature of muscle weakness. The muscle is weak, weaker
that ones normal, and one is attempting to use it to
perform more work than it is capable of doing, just walking, so as a result, it tightens up. Stretching it only will make it tighter ? I cant find anyone to corroborate or what to do other than attempt slow strengthening with PT. Its a vicious cycle, because,
the tightness is so uncomfortable, and causes less balance while walking, so I walk less, which makes muscles weaker. I am also much more tired. Im in NYC,
covid lockdowns, dead of winter cold, stuck inside.
Only getting home PT, facilities are closed that have
treadmills, and other sophisticated machines for this rehab. I have gone to in the past.
Docs don’t know, really, the lack of coordination of care is stunning.January 9, 2021 at 7:58 am
Thank you Walter, I have been on ivig for 4 yrs.
Severe Tightness, as opposed to weakness, only come on after having covid. When I first started ivig, i did experience some bottom of foot tightness and toes
curled from that. But as i improved on the ivig, got Pt
it subsided, until now and it is worse than ever.January 8, 2021 at 6:57 pm
Do has anyone explained to you why the tightness,
that a symptoms worsens w you get cold makes sense,
but why tightness, when the hallmark of the disease is muscle weakness ?
I don’t know why, doc here n nyc are very reluctant for prednisone, especially if its the pts. idea, not theirs, its like asking for plutonium.
Than you for your opinion.January 8, 2021 at 5:53 pm
What exactly do you with your Pt ?
Due to covid, mine comes to house due to covid rules NYC.
I had covid, 8 mos. ago, not bad, recovered at home.
This tightness thing is all since then.
I had new elctrodiagnoatic studies, confirm regression.
See my prior post from 2 days ago
Thank you doe your input.January 7, 2021 at 2:59 pm
I had the antibody test, months ago.
There concern for these other drugs is the myriad
of side effects and risks for every other infection
on earth, not just covid. Gabapentin, once i passed 200 mg, which is non therapeutic, I cant stay awake, lyrica has had no affect, is like a sugar pill for me.
Plasmapheresis, is inpatient, pic line, during the highest number of covids on nyc since last year, and a new starin.
I have manhattan docs, centers of excellence.
They feel its covid antibody inflammation, which
they don’t know enough about, that is the cause, and
there is no data, studies, enough cases to even guess
what to do responsibly. I am the only cidp,
covid pt. my doc has. I have googled it…NOTHING
I was thinking, regeneron,or remdesevere, as that is given to hinder the covid inflammatory response, specifically. Maybe that is still in me, as indicates in the antibody test.
Docs, hate to have suggestions made to them about drugs, or anything…too much ego, and they hate that they dont know, and since covid in nyc, I can sense the change in their attitude in seeing pts in full ppe, at these major hospitals, they r uncomfortable, hot, typing their own notes during visit so not to have another person in room like prior to covid doing chart notes, making them impatient.
The immune response is different now in me, or the ivig would still work..nothing else changed.
I appreciate your input, if you hear of anyone with my situation please let me know. This is making my life
no existent right now. Hands feet, pain unyielding.