Patrick Cotter
@patrickcotter
@patrickcotter
Posts: 1
Joined: Oct 05, 2017
Brachioradial pruritus. (severe itching on forearms and neck, no rash).
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
@njcarolnjn Hi, my friend. Just read your note, and recognize myself in it. I knew I was fighting itching on my forearms at an awful pace, but had no idea itwas “brachioradial pruritis”. But the term does make sense, although by struggling and studying a lot by myself I have learned what is causing mine. It may or may not be same as yours, but the experience sounds about the same. And I have the scars on my arms to prove it. I got wind of the dX a couple years ago, and have since learned a lot about various forms of Amyloidosis. In fact, Mayo said last year that they could not deny, without much further testing, that I have some form of FreeLiteChain Amyloidosis. Based on the tests they have done on me, I prove positive with the SERUM FreeLiteChain(C) sFLC-Bindings UK assay. I may have such things as AL (Amyloidosis Light Chair) ACys (Cystatin-C), AGel (Gelsolin) or others. It — or they — may be primary, systemic, localized, or so on. You can read my story at https://bit.Ly/1w7j4j8, titled Amyloidosis Series 13 or Amyloidosis Series 12. But in any event, what is important here is that Light Chain Amyloidosis is quite possibly the cause of your brachioradial pruritis. My arms have bled, oozed various liquids and gels, been black with cross-hatch furrows, and itched badly enough to make me think I am losing my mind. I get a little relief from some various medicated creams, But there is not much that helps. Only having an idea what is going on. Your local clinic can work with various top labs to do the sFLC and 24hr urine tests, but most doctors are too lazy to do that so they rely on their local clinics. But these are almost never well enough equipped to do the work. It takes a top lab like Mayo or ARUP or Brigham and Women’s, or Stanford to get the protein dX done properly. The lab needs to have an Atom-Force microscope and other very expensive equipment to do it right. Do not settle for anything less. Read the work of the Mayo staff on their web page, about Amyloidosis, or go to AmyloidosisFoundation.Org. The biggest problem I have with this is untrained doctors and labs. But it is time for your arms to stop bleeding and oozing like mine.
thank ypu very much my biggest issue is no one believes me. i no longer know where to turn 5 years and counting
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
My brother-in-law had this and the only thing that helped this was putting frozen peas on his arms. The
doctors he saw had no answer and wanted him to see a psychiatrist. All of a sudden it went away and never returned.
i wish
wanttoscream
@wanttoscream
@wanttoscream
Posts: 16
Joined: Nov 04, 2017
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
i rhink the worst part is no drs have even heard the term they look at me like im crazy
Liked by kimklein4759
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
i rhink the worst part is no drs have even heard the term they look at me like im crazy
i often wonder if i should let them so surgery on my neck medicine is scary now days your just an insurance check
Liked by Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2499
Joined: Oct 09, 2016
Hi @njcarolnjn,
Brachioradial pruritus, and your symptoms are very much real! Perhaps the fact that this condition borders between neurology and dermatology, is what makes it all the more difficult to treat?
Here’s a study that was recently published, which you may wish to read.
“Impact of drug therapy on brachioradial pruritus” http://www.scielo.br/scielo.php?pid=S0365-05962017000200281&script=sci_arttext
wanttoscream
@wanttoscream
@wanttoscream
Posts: 16
Joined: Nov 04, 2017
I have appointments at Mayo in Jax with a dermatoligist and a neurologist soon. I saw the same 4 years ago. Maybe some progress has been made in treating. Thank you sharing that study. Greatly apprexiated. I slept on a water bottle filled with ice last night and have had little sleep.
Liked by Kanaaz Pereira, Connect Moderator
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
Hi @njcarolnjn,
Brachioradial pruritus, and your symptoms are very much real! Perhaps the fact that this condition borders between neurology and dermatology, is what makes it all the more difficult to treat?
Here’s a study that was recently published, which you may wish to read.
“Impact of drug therapy on brachioradial pruritus” http://www.scielo.br/scielo.php?pid=S0365-05962017000200281&script=sci_arttext
thank you i now lie inbed heating pad pm back and ice on arms functional doctor says hashimotos i dont know just feel im dying slow painful death Merry xmas to me
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
Hi @njcarolnjn,
Brachioradial pruritus, and your symptoms are very much real! Perhaps the fact that this condition borders between neurology and dermatology, is what makes it all the more difficult to treat?
Here’s a study that was recently published, which you may wish to read.
“Impact of drug therapy on brachioradial pruritus” http://www.scielo.br/scielo.php?pid=S0365-05962017000200281&script=sci_arttext
the problem with this is i do have severe spine disease cervical and lumbar drugs are out of the question particularily antidepresssents what i do need is a doctor un my area
Liked by Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2499
Joined: Oct 09, 2016
Hi @njcarolnjn,
Brachioradial pruritus, and your symptoms are very much real! Perhaps the fact that this condition borders between neurology and dermatology, is what makes it all the more difficult to treat?
Here’s a study that was recently published, which you may wish to read.
“Impact of drug therapy on brachioradial pruritus” http://www.scielo.br/scielo.php?pid=S0365-05962017000200281&script=sci_arttext
Hi @njcarolnjn,
Have you tried any topical treatments like topical forms of menthol, or topical anesthetics (e.g. lidocaine)?
You mentioned, “…cervical and lumbar drugs are out of the question particularly antidepressants…” Have you had negative effects from these types of drugs?
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
Hi @njcarolnjn,
Brachioradial pruritus, and your symptoms are very much real! Perhaps the fact that this condition borders between neurology and dermatology, is what makes it all the more difficult to treat?
Here’s a study that was recently published, which you may wish to read.
“Impact of drug therapy on brachioradial pruritus” http://www.scielo.br/scielo.php?pid=S0365-05962017000200281&script=sci_arttext
tried all the creams even compounded. Thete is mot a drug made yhst foes mot have detrimental side effects. i saw spinal surgeon. Hello gasped at the sight of my scared arms. Hello suggested cyrotherapy and doing pn disibility
njcarolnjn
@njcarolnjn
@njcarolnjn
Posts: 67
Joined: Dec 07, 2017
thedinnymurph
@thedinnymurph
@thedinnymurph
Posts: 34
Joined: Oct 04, 2017
Hi fellow BRP sufferers, especially @njcarolnjn ….I’m so very very sorry to know of your suffering and dilemma as I too have just gone nuts with this ridiculous condition. Had my third cervical epidural administered by the pain doc on Dec 1. By Dec 2 I was scratching. He said the third epidural might be the charm. NOT! Now the option he suggests is to see a neurosurgeon for spinal surgery on the cervical discs that are so bad they have caused the stenosis that’s causing the impingement on the nerves that’s causing the CRAZY ITCH/PAIN/BURN. So like you all I’m back to ice, ice, ice and steroid cream and lidocaine and pramoxine. Really nothing but ice helps and even that takes longer and longer to soothe.
Before I even think seriously about surgery, I’ll try acupuncture and I read about a topical mixture of Elavil and ketamine (anybody try that?) My neurologist suggests mindfulness therapy!!!! He nearly launched me out of my chair! I told him I see a therapist already and am on Effexor and mirtazapine for depression and he can go mindful himself.
This BRP is starting to kind of take over my life. FL has approved medical marijuana and the pain doc said he could offer that. Whatever.
@kanaazpereira
Hello @njcarolnjn,
Welcome to Connect. I’m so sorry you are going through this. We understand how difficult it can be to deal with such a chronic condition, and it’s important to know you are not alone! I’m tagging @thedinnymurph @darlia who have also dealt with similar issues and may be able to provide some support. Your Connect community is here for you!
If at any point you start to feel like you may consider hurting yourself, please call the National Suicide Prevention Lifeline at 1-800-273-8255 for immediate help. Your experiences are real, and your feelings valid.
Your safety is the most important thing to us and needing to talk to a professional doesn’t show weakness – it shows strength!
Liked by karenvduke