I don't know what to do.

[chai]

(I posted this in a different forum but deleted it upon noticing it would be more relevant here)

To abbreviate a very long story, I am 26 and last March I had a severe bout of weird left leg heaviness. When I finally got in to see a doc a few days later, it had improved a bit, but he also noted that I had mild foot drop and was lacking a lot of strength in my left arm. I also developed a strange sensation of partial numbness on the same limb, which I only really noticed when water or clothing touched it, and tingling in my fingers.

I had a brain MRI which showed some spots suggestive of demylinating disease (according to the radiologist), but my doctor insisted that most people have these. He was not a neurologist. I had another MRI of my C-Spine and did not read the report, but I was told it seemed fine. Lots of blood work taken and was told all that was "pretty good." My reflexes are brisk on the left side. I had a very brief encounter with an actual neurologist who spent 5 minutes with me and declared it peripheral nerve damage, "but come back and see me in two weeks if it doesn't improve."

I lost insurance at this time and figured it probably was just nerve injuries which would heal. Months passed and the abnormal sensations on my arm have vanished, but I continue to have difficulty lifting heavy things and seem to have lost the precision I used to have in my fingers, as I am a classical musician. My left leg also has not improved at all. Going up stairs is torture, as is standing up from any sort of sitting position, and my balance is off. I regained insurance, got an EMG which came back normal, and was told by this new doctor that my brain MRI was suspicious...though he was a spinal injury specialist and again, not a neuro.

I finally secured an appointment to see another neurologist in 3 weeks, and I meet with a new primary care doc tomorrow.

I am honestly nearing the end of my patience. I used to be an avid hiker and jogger, and now at only 26 I walk with difficulty, my leg seems to give way several times throughout the day, and I can barely climb a few stairs. This is so frustrating and I've started breaking down emotionally, especially this past week when I could barely stand up from crouching down to access a fridge at my work.

I feel like I need a cane or something to assist me (loathe as I am to admit that, but I am tired of nearly falling), but without an actual diagnosis of anything that seems fake. I was going to bring that up to the new primary doctor tomorrow. I just miss being able to MOVE!! Does this sound like it could be MS or CIS? Both were mentioned to me, but it's been months...and I HAVE improved a bit since the incident in March, but have not gone back to normal at all.

[Scott1]

Hi,

I don't know what your condition is but seeing a neurologist is the right thing to do. At this point its way too early to give your symptoms a name. Try to avoid sounding like you are self diagnosing when you see medical practitioners. Guide them through your symptoms.
When you see your new primary care doctor see if you can get a raft of tests for infections that might be suspects you can eliminate such as lyme, babesia, bartonella, chlamydia and mycoplasma. Check also for nutritional imbalances.
At this stage you should be objective and seeking answers not drawing conclusions.
Regards

[lyndacarol]

Welcome to ThisIsMS, chai.

Like Scott1, I do not know your precise situation. When you met with your new primary care physician, I hope you took a written list/timeline of all your symptoms and a written list of questions (I can't always rely on my memory.)

In my opinion, a GP can be a good "disease detective" and organize the investigation, referring you to the appropriate specialists.." I believe that if you see a specialist immediately about a problem, he will find a solution only in his specialty; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

Your symptoms are consistent with many conditions – they may seem to be neurological to you, but neurological symptoms can appear with conditions that have other causes. For instance, neurological symptoms are the first to appear (even before signs in blood tests) in a vitamin B12 deficiency, or other nutrient deficiencies (like magnesium). MS is one possibility, but MS is a diagnosis of exclusion and the other possibilities must be ruled out first. Your doctor may consider starting with these:

Blood tests
Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
• Vitamin B12 and folate levels (Your doctor might also consider Magnesium, Iron, Zinc, & Copper.)
• Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
• Vasculitis evaluation
• Oral glucose tolerance test
• Antibodies to nerve components (e.g., anti-MAG antibody)
• Antibodies related to celiac disease (Gluten sensitivity is a problem for many people; it can cause neurological symptoms.)
• Lyme disease
• HIV/AIDS
• Hepatitis C and B

Also, request your own copy of any test results.
Scott1 is correct: "At this stage you should be objective and seeking answers [and collecting information from testing as a first step], not drawing conditions [yet]."

And, by all means, do use a cane or whatever you need to stay safe and avoid falling! We don't need any avoidable complications.