Mayo Clinic Connect
Does anyone know of this. I think its rare but does exist. My neurologist does not know about this. I have compression between my c5 and c6 cervical disk and have had alot of sun damage to my skin.
Liked by karenvduke
I truly can sympathize with your situation. I've been dealing with the EXACT same thing for probably 3 or 4 years now, but there were many months in between when my symptoms just disappeared. But now they're back and with a vengeance!! The only relief I get is from ice. And I don't have insurance. 🙄
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I don’t know where you live but there is a new treatment available that insurance doesnt cover anyway called PIT- perineural injection therapy. You can read about it and find trained health professionals – hopefully close to you. It is specifically aimed at calming down the sensory nerves that cause the neurogenic itching.
Many people get complete relief from this. I am going to a second trained professional next month. I think it is important to find one with experience and success with it. I didn’t find that to be the case with the first one. In addition, you may find one that will give you the first treatment free to see if it works. There are professionals out there who are more reasonable with their fees for this, so look around, just like you would for any high quality doc or dentist.
Pseudo science, no clinical trials, or research, quoting another doctor who was shocked he is used in the advertising. But like I always say if it works for you fine, but it's never been proven that it works, it is sugar coated science, feel good junk. http://www.fmperplex.com/2014/01/27/324/
I read that article and also discovered the author of it is an old retired doctor from Australia that writes similiar controversial articles about various medical issues. I don’t think he is particularly credible.
Personally, I think the evidence of no need for medications and no more itching speaks for itself.
I personally am open to most new therapies where people obtain results. If it works for them, that is great. And I am open to trying something as harmless as this. Many a medication, approved by the FDA, and having gone through numerous trials cause serious adverse side effects. I am one to prefer a more natural remedy that resolves the problem, then a drug that only masks it at best.
By the way, what did you mean by quoting another doctor, who is shocked he is used on the advertising? What doctor do you mean? Do you know him personally? I didn’t see anyone quoting a doctor or doing any advertising?
If you are referring to the referral of the Orlando doctor for PIT, someone specifically asked for a doctor in that area who does PIT. In addition, all of these doctors are listed on the Lyftogt website.
I will have to look for that other Dr tomorrow but anyone who says there is no dependency without doing clinical trials is only doing this for the money. Praying on people with chronic illnesses is the same as selling snake oil. I have suffered since the 1980's & in 2000 begged a Dr for something, she prescribed the hydroxyzine which is a lifesaver, natural methods do not work for me. My arms are full of scars to the point people asking what is the white spots on arms. The article is all advertising, that's how he gets people to his product. I posted it because he says all these things with no clinical trials, so he is assuming or making up results which is sickening to desperate people. I also use Aspercream per primary, it has lidocaine in it. It's for pain which I always thought was the culprit. Also Triamcinolone cream which is free thru my insurance. Ice, and other products do not work, my itching is severe. I take ibuprofen for all my pain, and any other pain I learned to ignore it like the fibro diagnosed in1984. Because of all the diseases being diagnosed, each next one was worse than the previous.4 rare, at least 5 autoimmunes, however on their site says fibro not an autoimmune. Every Dr I saw said they believed me and only took one yr to get diagnose thru rheum.
Liked by Martin Jensen, Volunteer Mentor
When contacted by the author, Professor Zochodne replied: “I can indicate that I have no interest in it, have not endorsed it or plan to endorse it and am disappointed our work would be quoted for something without evidence.”
Also Dr Geoffrey Bove. also disagrees, says sugar water is pseudo science.
I am sorry that you have had such a difficult time but also glad you have found some treatment that works for you!
You know Annie, there are naysayers everywhere; and certainly people find results with different treatments; and certainly there are people trying to make money on a product but also docs who get good results and have patients coming all over to see them. People are free to share their stories, successes and failures and free to weed out from these posts what they want to try and what they think might be snake oil or hokey. The world is made of all kinds of people- that is for sure!!
Hi I’m a sufferer who sympathizes completely with this maddening disorder. After pursuing treatment with dermatologists without success I did research on my own and found the cause (I think) for this horrible condition. I was already taking Neurontin for neuropathy. I have Sjrogrens and Mixed Connective Tissue Disorder. Noting it treated a weird skin itch also, I convinced my rheumatologist to order an x-ray which showed cervical spine problems…..long story short, this led to neurologist for MRI…he sent me for a cervical spine epidural. NO symptoms for 2 weeks….then a slow return.. This was in July and I’m due for a second on Oct 18
I’m as I said convinced this awful condition results from cervical spine inflammation. BUT saying that, the sun doesn’t help. I live in FL and try never to be in the sun.
The only treatment beside the epidural that ever helped is a steroid cream mixed with lidocaine. Provided only some relief. Promoxine (sp?) also helped somewhat. Icepacks remain the most effective. Hard to sit in meetings, restaurants, etc with them. This condition is very limiting socially. It’s made me cry, scream and have meltdowns not attractive in an adult!
I just read your post. I too suffer from the same symptoms, including the back issue. I always thought the back was a separate issue, but in reading these posts, I'm beginning to think otherwise. The back injections were only very temporary and costly. Recently I have been using a magnesium oil on my back and it does give some relief, but some days are still unbearable. Has any doctor recommended back surgery of any kind to eliminate both issues? My dermatologist said that the nerve endings on my arms are what is effected, so perhaps there is some impingement from the spine that is effecting the nerves in the arms.
All I know is that I need a solution!
I have been diagnosed with this also. It's just terrible at nights. The scratching gets so bad it wakes me up like an attack of some kind from inside. Like others on here the only thing that helps is rubbing ice on the affected areas which are the upper arms both of them. I'm on 2700 gabapentin a day and it helps some but I only get maybe 4 to 5 hours of full sleep a night. Worn out most of the time and I sleep better or longer without the itch if I'm in a recliner
The dermatologist suggested a injection in the spinal cord of some type but hasnt set it up.yet with whom ever. But as I read here that doesnt last very long. I've had this for many years but finally went to see a dermatologist it just got so bad that I cant hardly stand it. Evidentally from reading there is no really good way to get rid of this. Seems a person can try things but their still gonna itch. It use to go away for a few months each year but seems the older I get the worse it gets
I had xrays and an mri of the spine and saw a neurosurgeon- which ruled out any need for surgery.
In the meantime I found dermatologist, who is an itch specialist, who often uses a special compounded cream, that is blended by a compounding pharmacist, for patients. It works well for me. I use it mostly in the evenings, because the Lexapro stopped most of the itching for me. The cream has ketamine, amitryptaline and lidocaine in a lipoderm base.
On the 22nd, I am getting the PIT injections, because I would prefer not to have to use these medications. The PIT injections have worked for many people to completely go off medications.
Google Dr. Gil Yosipovitch, MD- he is a dermatologist that specializes in itching. In particular, watch a 11/2018 you tube video where he speaks about treatment for various itching, including the neurogenic itch, stemming from the sensory nerves below the skin surface.
Also it helps to rule out any possible underlying issues with spinal nerves via xrays, mri, and high quality neurologist/ neurosurgeon.
I have found you have to be your own advocate. You may find yourself educating a doc. The MD doesn’t mean they know everything. They only know what they have been taught or focused their practice on. They don’t always even know to refer or who to refer you to. I have had to seek this out myself and pass by several docs to get to the “high quality” ones with respect to this neurogenic itch- the ones who know about it and have been treating patients for it.
I have had this off & on for years. I thought that it was very dry skin! A dermatologist in Dallas gave me a bag of lotions to try, but none worked. Rubbing something on my arms & legs made the burn worse. At this time I have seen a new dermatologist in my city & have started Gabapentin three times a day. I have learned that I have to be careful putting on my top or taking it off-if it rubs across my arms, I have a slight burning. When the burn has been bad at night, I’ve taken a sleeping pill! I just did some research & figured out that this is what I have. I’m going to have an MRI & will find out if there is an impingement. I will let you know.
Many people with neurogenic itch take Gabapentin. One dermatologist suggested that to me, but I view it as a last resort, due to concerns about side effects.
Also wondering about those who take it?…….Does it work to reduce or eliminate the itching and burning? I would not want to take it if it is only partially effective.
I have been taking Gabapentin for about three weeks. It does help, but I still have issues after I shower at night. I sleep much better & have a little memory issue-it takes a few minutes to remember something. It sure beats the bad burning that I had experienced.
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