Chiari Online Support Group

New -seeking diagnosis - discouraged


#1

HI my name is Meredith. I’ve done my own homework since the doctors cannot find out what’s wrong. I’ve had chronic pain in neck and head since age 12. Some 29 years later I have no diagnosis except migraines. In my heart I know this isn’t migraines. My episodes are increasing in intensity and frequency. I’m growing worried about limitations such as trouble with extended sitting, writing, reading, sleeping positions. I can’t look up or down without immediate pain. A diagnosis is now critical. I have constant neck pain, regular cranial pressure where I can feel compression causing nerve and blood vessel problems. Additionally the main clue is the very specific location of pain. Base of skull. More recent episode involve numbness in face, ear and arm (pinched nerve) and 9/10 pain causing ER visit. I also have ringing in ears. Interestingly this problem runs strongly in the family. Everyone describes it a touch different like the connecting point of neck and head. Skull not properly supported etc. I just need some hope, support, and someone to say I’m not crazy and. Some confirmation this it isn’t run of the mill migraine headaches. Migraines don’t cause nerve pain.


#2

Hey Meredith,
If you are having pain, physical pain, you are not crazy. There you go, I said it. I too have been told my symptoms were ‘psychosomatic’ or another one was ‘idiopathic in nature’. That was until they do a scan and see the issue for themselves. But I do have to warn you, you could go to 6 different neurologists and get 6 differing opinions. “Migraines don’t cause nerve pain.” ohh now that’s all open to interpretation. What is nerve pain? and again every dr/quack/specialist has their own view of this. The brain receives and processes all sorts of stimuli from all over the body, so to say ‘Migraines don’t cause nerve pain.’ would be false imo.
I have had the ‘joy’ (misfortune more like) of having many a diagnosis and although my situation is not chiari related, it is a brain thing. Nerve pain, dental issue, visual problems, migraines, cluster headaches, cervical dystonia, sensory issues are just a few diagnosis I’ve had (I’ve had many more) Ohh and my favourite ‘Idiopathic in nature’. And to say it’s all very frustrating is one hell of an understatement.

My personal advice would be (as I’ve ‘tried’ to do) listen to their advice, follow through with what they recommend. If you don’t then they will use that as an excuse for your continuing pain. Keep a log of treatments you tried. Then find another Dr and get their opinion, until you obtain concrete proof ie xrays, scans of your condition. This can be a long drawn out process, but having been on this merry-go-round I found you need to exhaust every avenue suggested before they will investigate further.
None of this is fun and WE know this from our own experiences, but this is the route many of us have had to take to get that concrete diagnosis.

Merl from the Moderator Support Team


#3

Thank you Merl for your advice and support. Im sorry that it seems you have had a similar experience. Did you ever get a diagnosis. You are right they do ask for me to try a lot of time consuming things. Currently 2 doctors and the ER called for a new MRI. Now the insurance is the blockade. I’m terrified the MRI will show nothing and then I’ll be psychosomatic as well. My at home regiment involves naproxen, electric STIM, massage and essential oils. They have ordered physical therapy too. I’m doing another push for a diagnosis but I don’t understand. Why past CAT scans and. MRI 's don’t show anything. Thank you for having me in the group. I was afraid you all wouldn’t like my missing diagnosis.


#4

Thank you for having me in the group. I was afraid you all wouldn’t like my missing diagnosis.

Seenie from Moderator Support here, We’re pleased to have you Meredith: we welcome people who are struggling with a diagnosis or with getting one. All our questions are designed to deter scammers, spammers and trolls, something you will rarely see here. Some people get annoyed with us for all the questions we ask, but that’s what keeps this and all Ben’s Friends communities safe and supportive. You are very welcome here, and we hope that being part of this group will be helpful to you.

Seenie, Merl’s colleague on the Moderator Support Team


#5

Hey Meredith,
Ben’s Friends is a rear conditions support network site and I do not believe there is a page within the network where people have not had to deal with the issue of a missing diagnosis, which is frustrating, but very common. Often the medicos point out or look for obvious or more common conditions and then it’s often not until there is a major incident that they more thoroughly investigate. I spent 40 odd years telling people there was something not right and for those 40 years I was simply labelled a hypochondriac, so I’m driving down the road and the lights went out, I couldn’t see. This was the trigger that made them investigate further. Now I knew there was a problem and it wasn’t all ‘Just in his head’ (no pun intended) despite the fact it was physically all in my head. That label of hypochondriac followed me everywhere, then when they did a scan and found the issue a dr came out with “Ohh look what we found…”, I was SO VERY ANGRY. But my words weren’t enough. They needed proof, they needed scans or tests, then they would accept, but prior nobody would believe I was having these weird sensations. “He’s crazy in da coconut” was easier for them to believe.
Even if your scans don’t show anything that doesn’t mean there’s nothing wrong. Many years ago multiple sclerosis was difficult to diagnose and many people were labelled crazy, that was until a scan could be performed to show it’s existence. But still even with a scan often it wouldn’t show and it was more of a common list of symptoms that gave a diagnosis.
The problem with brain issues is that they are not easy to diagnose and although I am a member of the TBI (traumatic brain injury) group due to the neurosurgeries I have endured, I can see many, many parallels with quite a few other conditions on the Ben’s Friends network, chiari being one of them.
The medicos may make out they know it all and have all of the answers, one thing you will find here is that they don’t. So please believe me when I say “By no means are you alone”. These medicos may have all the qualifications in the world but they do not know it all, no matter how much they profess to. All of their knowledge comes from a book. Our knowledge comes from a personal, lived experience. No book can ever give you that.
So you are very welcome here, diagnosis or not.

Merl from the Moderator Support Team


#6

Did they ever get you an mri? Can you ask for one? Welcome but I’m sorry you are in this boat. I too was there and misdiagnosed with migraines.


#7

Hi! Nice to meet you. My insurance company just denied it again and now require my doctor to petition their panel of doctors. I’m thinking of paying cash. I have a quote for $750.


#8

They denied an mri??? I wonder why? I have never had that issue. Depending on your money situation (in case they deny again) they usually have charities they work with that can help with payment. They work kinda like an insurance company. My husband had to do that and they paid 80% of the cost.


#9

Great idea! I think they really don’t want to pay for it.


#10

Meredith,

It doesn’t make sense that a MRI was denied since your condition can only be confirmed by MRI. I have a feeling there was an incorrect Dx code used on the MRI request. The IDC-10 code (in America) has to be correct for a test to be approved.

azurelle