Can't understand what it is....
This one can be a long one,
I am a 18 year old science student. I have been daily headaches for past 8 years, not been lucky enough to have a proper diagnosis, I have been diagnosed with severe OCD, high functioning depression, migraine and the list goes on for undiagnosed symptoms. But today it's about a confusion I have.
I didn't know MS[multiple sclerosis] exists. When I came across this condition[autoimmune disease] all of a sudden every symptom I've had seemed reasonable, the catch is this is one of the most misdiagnosed condition.
For ease I'll be attaching this link of a YouTube video(2 mins) which talks about symptoms of multiple sclerosis.
https://youtu.be/eEGct5EimSs?si=S06POkWsFvel5XMY
Talking about my headache, I really can not differentiate what it is. The first thing I feel once I wake up is headache.
The symptoms that the yt video mentions is it what I go through everyday.
Talking about diagnosis I had CT-scan and brain MRI. Both of which were completely fine. Till the time I didn't know about MS, I believed that I have the worst case scenario of OCD, depression, anxiety, trigeminal neuralgia, optical neuralgia, occipital neuralgia, chronic migraine, daily headache, photosensitivity, random pins-needle through out the body and what not.
I have consulted over 7 doctors [best neurologist in different nearby states] but all of them gave me, what I call the "candy", a multivitamin, antidepressants and some also gave me migi tab 5-10mg.
I have lost the hope of having a diagnosis soon, with my medicine entrance exam in a month.
Just to add, no body recognizes my pain and symptoms in my family.
Now coming on to why I'm here, it's because I want a first experience of multiple people.
Is it just me or many people out here are having the same symptoms and are diagnosed with chronic migraine, feel free to say anything you want.
I'm grateful that you read all the way till here.
Hi
- Thank you so much for taking the time to post. My heart feels for you, and I can tell from your post that your journey to a definitive diagnosis has been difficult. However, since I'm not a medical professional, I unfortunately can't assist you with suggesting or eliminating potential diagnose(s). That is something only on your medical team can do. What I can do though is point you in the direction of some helpful information that may help you feel less lost in the weeds. There is so much information out there about migraine and some of the other conditions you mentioned, like multiple sclerosis. It's understandable that anyone would have trouble navigating it all on their own.
Here are some resources that come to mind: 1) this article discusses questioning your migraine diagnosis: https://migraine.com/living-migraine/question-diagnosis, 2) how is migraine diagnosed (https://migraine.com/migraine-diagnosis), 3, the different types of migraine (https://migraine.com/migraine-types).
I know that these may not answer all your questions, which I apologize for. But it may be a good start to see where you might go next. If you have any follow-up questions, please don't hesitate to post a reply. We are here to help to the best of our ability!
Best,
Cody (Team Member)
P.S. We also do have a sister-site for multiple sclerosis. You can find that here: https://multiplesclerosis.net. You can also find an article directly talking about the diagnosis of MS here: https://multiplesclerosis.net/diagnosis.
Hi
Thank you so much for sharing your experience with us. The first thing I can tell you is you're not alone. It's not uncommon to wait years before getting an accurate diagnosis - it's exhausting and frustrating.
If I'm not mistaken MS is typically diagnosed with MRI's and spinal taps and probably blood work. It's good to hear your MRI is OK., which must be a relief. On the other hand migraine is a diagnosis of exclusion, meaning the doctor goes over our medical history, symptoms and gives us a complete neurological exam. At this time there are no blood tests or imaging that can confirm or rule out migraine.
You mentioned you've seen a number of doctors. I do wonder if it's time to seek out help from a doctor who is a true expert in treating migraine and headache disease. Let me explain. General neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may not be 100% accurate. A true migraine expert is board certified in headache medicine not all neurologists have, and treats migraine and headache all day, every day. Here is more information on why these doctors are beneficial and where to find them;
1) https://migraine.com/blog/really-find-headache-specialist/
2) https://migraine.com/living-migraine/change-thoughts-new-care/
3) https://headaches.org/resources/healthcare-provider-finder/
4) https://migraine.com/living-migraine/how-to-find-a-neurologist-or-headache-specialist
Cody and I have given you lots to go over. Please reach out with more questions and know we're here for you. I'm sending you pain free wishes and am looking forward to hearing from you, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member
