Could it be MS?

It is very hard and time consuming to get answers to this type of health situation and I am sorry you are suffering. It seems doctors tend to point to psychological factors when they don't have a clear answer, which can be upsetting.

I would take each symptom separately because you might have separate different issues. If you can get a referral to a good PT who has some expertise in dizziness and vertigo that might be a start. I have found PT's to be very helpful in this area.

It definitely sounds like you have migraines, based on my similar visual and balance issues. You can have both optical and vestibular migraines without head pain. The other pain, numbness, tingling (that I also have) can be trigeminal neuralgia, I am told, when occurring in the face.

Have you had an ANA and other autoimmune tests? I will tell you I have had numbness and tingling sensations for 20 years with no answer but I did get a lupus diagnosis.

A brain MRI is helpful but I am a fan of "slow medicine" and doing only what is necessary. It can get overwhelming chasing this down. In my experience functional, integrative, holistic or naturopathic medicine is helpful- whatever you want to call it and can find. I love my neurologist who doesn't often order testing, listens sympathetically, and doesn't send me on wild goose chases. I have a lot of diagnostic codes! I do tai chi for acceptance.

Welcome to Connect @mkbc. No, you are not going crazy, don't believe that for a minute. I definitely understand why you feel that way though and have been through my own journey where I felt that way too and it sucks.

It's not easy to feel odd sensations and disruptive symptoms that have no clear medical diagnosis. Sounds like you've been doing your due diligence, as have your doctors with ruling things out.

Here is a link to a video from Mayo's Dr. Sletten who lectures on Central Sensitization Syndrome (CSS). I'm no doctor, but your summary sounds like you line up with CSS. Have a watch and see what you think -

Dr. Christopher Sletten - Central Sensitization Syndrome:

Interesting video. Pain management clinics often deal with emotions and behavioral issues along with the physical (and in this video, chemical) which always makes us feel like the docs, even the aware ones, are somehow blaming it on psychology. The difference in concept here is subtle.

I have been reading about retraining the limbic system to deal with some of my sensations. As I said, I also work on acceptance which is one reason I stopped looking for answers, and this video affirmed that strategy. Our efforts to find answers and cures may actually feed into our problems, according to this video- and I think that may be true, some of the time for some people but not all.

Even with definite positive testing (I have lupus and probably scleroderma, other stuff) this strategy can help I think.

I compare this to how I handle tinnitus. As soon as I even type the word, it gets louder. I try to accept and keep it on the backburner. Okay enough on that!!

I have no medical advice, but please get a Vitamin B12 test. I had random, multiple, intermittent issues and now discovered this deficiency is likely the cause. It could be anything, but this deficiency is so serious, it can have devastating results. I am still in shock.

Also, I’m going to be evaluated for Sjogren’s. It is a complicated condition.

I hope you can find help. Please post what you find out.

@rwinney
Thank you so much for sharing this video!! I did not know about Central Sensitization Syndrome and everything in the video is relatable to my experience and health status!

@mkbc
I have had many of your symptoms. Here are some of my questions for you.

1. Have you had blood work (full thyroid panel TSH, T3, T4, and TPO, iron, vitamin D, vitamin B12)? Thyroid issues and iron deficiency can cause many problems.
2. What did you have checked with MRIs (brain, cervical spine, etc.)? If you haven’t had a cervical spine to check if you have any compression on spinal cord or nerve roots, I would suggest you do. I have cervical spondylitic myelopathy at C5C6 and it caused headaches, neck/shoulder pain, heaviness in legs when walking and balance issues, weak/numb arms/hands/legs/feet, bladder control and urgency/frequency, etc.
3. Did you ever have an accident, fall or play contact sports which may have caused injury and some of your symptoms?
4. Have you ever had mononucleosis/Epstein-Barr virus, chickenpox, herpes virus, shingles, Covid vaccine/virus etc.? These viruses can continue to cause havoc on your central and peripheral nervous system and health since they hang out in your body (some for life)? You can be tested for these viruses to see if they are causing any of your symptoms.

Don’t let doctors make you feel your symptoms are all in your head. You are young and these symptoms are newer and you know your body best. You also know how these symptoms are affecting your quality of life and need to assertively advocate for yourself to get help with proper diagnoses and treatments.

Lyme test as well.

Covid causes lots of ongoing issues that are or look neurological. You don’t have to be really sick with it to have damage to nerves. I was having severe pain in legs suddenly that I would literally have to hit the floor. Happened every 2-5 days for over a yr. Thought it was back and went to back dr and ended up at neurologist. That was just one symptom. Also severe dizziness etc. now muscle jumpiness spontaneous. You are not crazy. The initial dr thought MS the neuro says no. I’m still being investigated. First symptoms after 2nd covid shot then when I got Covid was really when symptoms started. Covid virus has damaged a lot of people. Tons of research confirms same and it’s just the tip of iceberg. Your symptoms are real and you are not going crazy.

Please have your gp check for Pernicious Anemia . The symptoms are very similar to ms and frequently misdiagnosed as ms, mental problems or a host of others. Your experience is much like mine, a raft of doctors, tests, and nothing. This odd kind of anemia was obvious in my bloodwork for many years—low red blood count, high mean cellular volume with normal B12 and iron. No one noticed, until I did a deep dive into my symptoms and discovered a correlation to either Chronic Demylenating Polyradiculoneuropathy or PA.
Blood tests confirmed my diagnosis (especially for parietal cell antibodies) and I’ve been injecting B12 daily for 6 months. My anxiety, lack of mental acuity and air hunger are gone, but the tingling, numbness and walking problems will take longer to (hopefully) go away.
Please learn about PA and check out the available symptom inventories. The Pernicious Anemia and B12 Deficiency Support Group, a British site, is very good. Good luck in your search for the answer and please don’t give up!

You're welcome