Do I have Nerolgical Itching or a dermatology issue

[ennogs]

I have a medical problem I have that has been going on for 3.5 years. The issue makes me suicidal. I don’t know how much more I can take.

Around 3.5 years ago I got jock itch at the top of my thighs. It took about 5 months to get rid of it. Although the rash went I still had the itch. I was also getting itchy in between my toes. Other parts of my body also started itching.

I was referred to dermatology. I had to wait about 14 months to get an appointment. The doctor I saw said he couldn’t see any problems with my skin. I assured him I wasn’t wasting his time and I could feel the itching. He gave me some lotion and stuff to use when having a shower. I thought I would be called back a few weeks to see if it had helped. How wrong I was. I got a letter saying my follow-up appointment is in 6 months. I then got a second letter saying they had to move it back 2 months. I sent a letter to the dermatology department explaining that the itching makes me suicidal. When I had my second dermatology appointment I was seen by a senior dermatologist. Like the first dermatologist, he said he could see no problems with my skin. I again had to say I was not wasting his time and I wouldn’t be here if I didn’t have an itch problem. He then said I think this is neurological itching and the itching is caused by my brain. He told me no cream or lotion was going to help me. He said he would get my GP to refer me to Neurology for a brain scan to confirm his diagnosis.

I had to wait a year for my appointment with Neurology. I got a letter asking me to ring up to get my appointment. I rang up and said I was ringing up to get my appointment for my brain scan. I was informed I wasn’t getting a brain scan and my appointment was for an initial consultation with a neurologist.

When I had my appointment at Neurology it was clear the doctor had made her mind up before I got into her office. She asked me no questions about my itching. She told me I can’t have Neurological Itching as it is rare. What the hell? Even if it is 1 a million or 1 in 50 million, somebody has to be that 1 person. I politely asked how she could be sure this was not Neurological Itching without doing a brain scan. Her reply was I am a Neurologist with decade’s experience. How rude and condescending. She may be a neurologist with decade’s experience but she is not an MRI scanner. I had to wait a year for her to say this is not Neurological Itching. If she was able to make that diagnosis from the referral why did I have to wait a year to be told? Why not tell me when I was being triaged that they don’t think this is Neurological itching? The neurologist said she would ask my GP to refer me back to dermatology. Great. Am I going to have to wait another 14 months for a dermatology appointment?

I was then left with a dermatologist saying this is not a dermatology/skin issue it’s a brain issue called Neurological Itching and a Neurologist saying this is not Neurological Itching it’s a dermatology issue.

In the hope of getting the neurologists and dermatologists to have a conversation, I made a complaint to both dermatology and neurology. Dermatology said this has nothing to do with us. Your complaint lies with neurology and you were discharged from our dermatology department last year. I got a reply from neurology asking if I would be willing to have a team review my case and get a second opinion before raising a complaint. I very quickly agreed to that. Today I got a reply from neurology. It states the neurologist who saw me stands by her diagnosis and my case is not being sent to the team for a second opinion. What the hell? I was told I would get a second opinion. I have replied asking how the neurologist can say this is not Neurological Itching when it only happens when am awake and it doesn’t happen when I am asleep and my brain is asleep.

These are my symptoms and what does and doesn’t help.

Scratching myself does not stop the itching but I cannot stop myself from scratching. Scratching just makes it more painful.

My body gets lots of open cuts due to the scratching. I worry I will get sepsis one day.

Antihistamines have not helped.

Amitriptyline tablets have not helped.

No cream or lotion has helped.

I never get the itching when I am asleep. I only get it when I am awake.

What part of my body is itchy varies from hour to hour and day to day.

There is no rash or inflammation of the skin anywhere on my body.

Sometimes my skin is so bad due to the scratching of the itching that it looks like I am into sado-masochism.

The only thing that stops the itching is to briefly burn the skin with hot water or freeze the skin with an ice pack directly on the skin.

The itching makes me suicidal. It is torture. I suffer daily.

After reading all that would you say I have Neurological Itching or a dermatology issue?

[troy04]

You went through hell ! Can I ask you if the itching is confined to a specific area or it could be anywhere randomly?

[ennogs in reply to troy04]

The itching is random and can be all over my body. For example. My head may itch. then half an hour later my bum may itch, than an hour later my feet may itch, etc.

I never get full body itching, just a random part of my body. It starts about 20 - 30 minutes after I wake up and carries on until I go to sleep.

[lovesradio]

This sounds hellish as troy04 says and is testament to our complete silo of NHS treatment, when the chance of dermatologist and neurologist communicating about your itching are non existent. If you are feeling suicidal this should be a red flag to any competent health professional so get back to GP and see if your skin can be healed from the scratching as a first step. I know how hard it is not to scratch where it itches as I have eczema, and the difference is that it's also itchy when I am sleeping and often wakes me up.

[ennogs in reply to lovesradio]

Thank you.

[freefallmode]

Sounds horrible. I had something maybe similar for about 5 years. I got bounced around GPs and specialists (dermatologists, allergists, infectious disease, neurologist, GI) and no-one could figure it out.

I realised after 6 months there were some definite connections to diet, food triggers between 8 and 24 hours prior to the itching. Worth thinking about for your case perhaps?

For me it cleared up since a 2 month trip to India at the start of this year, where I tried different things there (diet, ayurvedic oils, long course of antihistamines)

Feel free to message me if you need more ideas.

[ennogs in reply to freefallmode]

Thank you.

[Caric1986]

Wow. I truly sympathize with you. Continue to advocate for your own health. I am dealing g with demodex and it had been diagnosed by eye specialist. It started on my body and got in my eyes. A reaction to covid Vax. They are all saying I an delusional except for the eye Dr. He had me on differnet drops that i kept building up a tolerance to. He said there was a med coning out that would eradicate it in my eyes. When it finally hit the market he put me on it. Xdemvy. It's 1900 bucks if you have no health inurance and comes from a specialty pharmacy. It stopped working for me u intil they gace me 2 weeks worth of meds. Then drops kicked in again. JI am now starting a law suit. He cannot effectively treat my eyes when no one is treating g my body. I intend to make someody and everybody pay for screwing around with my life for the past 2 yrs. All these people are a joke to me when I am in distress daily. Good luck and continue to fight for your right to a healthy life. Sue them for malpractice for not doing their job and sending you for the tests that you need. It costs them nothing to have you tested. They are getting g their pay for doing g nothing at all to really help you or to figure it out. Just by seeing you they get paid and did nothing. Our lives are in their hands and they could care less about us. This e tire situation is making me crazy

[Hidden]

I have skin conditions such as eczema but I also get parathesia from other conditions. I feel like my feet are itching and I know now that itching is in fact parathesia. Hows are your calcium, vitamin D, magnesium, B12 levels for example? Some neurological conditions cause parathesia too. Not saying this is what you have just a thought of what it could be. Good luck with getting to the bottom and so sorry its such a battle! By the way the neurologists kept telling me its too rare to have the conditions i suspected to have with my symptoms They were wrong, things have come to light and I do have at least one rare condition! Also do have any circulation problems. I have orthostatic intolerance and itch (no rash) when i have been on my feet for a while.