How do I get doctors to take me seriously about a potential CSF Leak?

@jordanametepe Hello and welcome to Connect. I know this is frustrating to not have a diagnosis for your symptoms. There are discussions here about CSF leaks, and typically they come after spine surgeries or a diagnostic test that may puncture the dural covering over the brain and spinal canal. From what patients say about them, the symptoms change if position changes such as laying down or standing up.

I think you may have better success, if you were to see a functional medicine specialist or environmental allergist. Those doctors look for causes and try to fine tune things to diminish inflammation, and they tend not to prescribe a lot of medication, and instead promote healthy living, and perhaps customized allergy treatments.

A couple sites where you can search for these types of doctors are Forum Health, https://forumhealth.com/ or
the American Academy of Environmental Medicine https://www.aaemonline.org/

If you have had injuries or physical trauma, perhaps a whiplash, there could be reasons for muscle spasms in the neck or shoulders. If spasms are moving or turning vertebrae, it may cause some of those symptoms such as dizziness face tingling, vertigo, head aches and nausea. A lot of symptoms can have multiple possible causes.

I have a lot of allergies, and I had an injury to my neck that years down the road resulted in spine surgery. I also have thoracic outlet syndrome that causes neck tightness and compression of nerves in my shoulder. If you have had Covid, that can cause a loss of smell.

I can understand why doctors are not accepting a CSF leak because your symptoms could have multiple possible causes, and if there is no history of something that may cause it, why would they look for it? A CSF leak is a serious business to treat and they don't want to put you through a difficult procedure if it's not warranted. If this information isn't what you need, please understand that in diagnosing and trouble shooting problems, you need to be objective and consider things that perhaps hadn't been considered before or eliminated from possible causes. Specialists only really consider what their specialty is about.

You may also be interested in this new group for headaches and migraines https://connect.mayoclinic.org/group/headache-migraine/

@jordanametepe
How old are you and how long have you had these symptoms?

Did you have an accident where you believe you now have a csf leak? What do you think would have caused a csf leak?

Did the ENT put a camera down your nose? Do you know why they prescribed you an antibiotic? That could have caused some of your new gastrointestinal issues. What were you told about why you have fluid draining from ears and nose?

Did your neurologist do an EMG/nerve conduction study of upper/lower limbs? A small fiber neuropathy skin punch biopsy and neuropathy blood panel?

Have you seen an endocrinologist to check thyroid/hormones and to see if prediabetic or diabetic?

Have you had MRIs of your spine?

Have you had a full iron panel to check iron levels?

Did you have Covid or the mRNA shots?

Do you have all of your imaging and bloodwork results and have you reviewed them in detail? Does anything show up as abnormal? What were all of the diagnoses and impressions?

Is it possible you have ingested selenium?

Thanks for the response. I understand the possibly of these symptoms being related to something else. However, I’ve had extensive work up… multiple blood test, panels, CT’s/MRI’s, etc. I don’t have allergies or deal with inflammation. This was ruled out very early on. I took antibiotics due to suspicion of a sinus/ bacterial infection. My symptoms were the same before and after the course of antibiotics. I’ve been very subjective to ruling out multiple things and have seen various specialist for that. In addition, ALL my symptoms are actually pointing a leak, but I haven’t seen a provider who’s specializing in leaks. The headaches started years ago. However, the majority of the neurological symptoms were sudden and got worse extremely quickly. Most people don’t realize there are many types of leaks, including ones that are missed on imaging. Diagnosing a leak is very difficult and the average person will see over 7 different doctors before getting a diagnose. Nobody wants to be labeled a hypochondriac. In conclusion, due to my continuous debilitating symptoms it’s extremely hard to live a normal life. It’s easy to say you might just have allergies or an occasional migraine but there have been tests done early to rule that out. There are many patients who were once overlooked after seeing several specialist and a long time of suffering are now telling their story about how a leak was found years later because the right doctor heard them and didn’t give up. Having perspective in a field like medicine is so important. Unfortunately many physicians carry bias and are quick to dismiss a patient’s concerns based off their own experience and understanding. Being put in front of the right person can change a persons life.

I’m not sure exactly what this is, could you please clarify?

I’m 25 years old, the headaches started at least 5+ years ago. The majority of the other symptoms about 1+ year ago. I’ve had a metallic taste in my mouth going back to my teenage years. ENT specialist performed a laryngoscopy to visualize my throat and sinuses. The findings looked normal despite he mentioned some boggy fluid in the back of my throat, didn’t seem to be a concern. Every provider I’ve told about the fluid draining from my nose and throat doesn’t to be concerned about the abnormality of that. Thyroid and hormones have been checked many times, which are within normal range. With my current Neurologist we did do an EMG, which was normal. I’ve had one MRI of my spine (without contrast) it came back normal with no suspicion of a leak. Also, a few MRI’s with contrast of the brain which was normal. Iron levels are good, I did have Covid years ago but I recovered fully so I don’t think that’s the issue. The only things that were abnormal was an elevated Creatine Kinase enzymes level (CK), Which suggested recent muscle damage and a low Red blood Cell count (RBC). Neither were too high or low, just slightly out of what’s considered the normal range. I’m not sure what would’ve caused the leak. I mean we’re all human, I’m sure there could been a time I hit my head or injured my back at some point over the years without thinking about it being anything serious. Spontaneous leaks occur too. I’ve been very open to other possibilities too and not trying to just limit this one diagnosis. But things don’t seem to be getting better and a lot of other things have already been ruled out. I’ll continue to keep faith that things will get better. God is great and I know he’ll make a way when there seems to be none.

@jordanametepe
Did you ever have an accident, fall or injury where you may have injured a muscle? Have you seen a cardiologist to check your heart/cardiovascular system? Do you exercise intensively? Have you lost a lot of weight where you may have lost muscle tissue? Do you eat a high protein diet?

You may want to see a nutritionist/dietitian to review diet/supplements to see if anything could help you with your symptoms. You may be anemic.

Are any of your blood results close to the minimum or maximum of the “normal” range?

Did you have your hormone levels checked? I have had the metal taste with hormone changes with pregnancy and COVID. Do you get heavy menstrual cycles?

1. https://my.clevelandclinic.org/health/diagnostics/22692-creatine-kinase-ck
2. https://resources.healthgrades.com/right-care/brain-and-nerves/elevated-creatine-kinase
3. https://www.verywellhealth.com/creatine-kinase-5324660
4. https://www.medicinenet.com/what_causes_your_red_blood_cells_to_be_low/article.htm
5. https://www.mayoclinic.org/symptoms/low-hemoglobin/basics/causes/sym-20050760
6. https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360
7. https://my.clevelandclinic.org/health/diseases/3929-anemia

It's a metal like lead, iron and others but it's fatal in high doses and there are symptoms people start having after a certain length of exposure. Google the symptoms and possible ways of getting exposed to it.

@jordanametepe
I meant to ask if you smoke/vape, drink or do any recreational drugs? Do you take any prescription medications?

You are right. God is good‼️ Happy Easter‼️🙂

I don’t drink, smoke/vape, or take any recreational drugs. I’ve never had a serious injury, I can remember plenty of times slightly tweaking my back or shoulder while exercising. I’ve worked out for many years but when this started the fatigue and muscle weakness didn’t allow me to keep working out. I can think of plenty of occasions I might’ve hit my head on something but not severe enough to seek medical attention at the time. Could it be related? Possibly, it’s hard to think of every time something like that could’ve happened. Every blood test is in the normal range besides the few I mentioned which didn’t seem to a be a cause of concern. I haven’t seen a cardiologist but I’ve seen pulmonary and lungs/breathing were fine. Also, a chest X-ray was done which came back normal. My diet is well balanced, I include protein, carbs, fats, fruits, and vegetables. No issues there as I’ve been monitoring what I eat as well. Last year when this occurred I did lose some weight about 15-20 pounds, I gradually gained that weight back over the past year. I am a man so I don’t deal with any menstrual related issues. My iron levels were normal as well too. God bless you too, I’ll continue to pray. Happy Easter.