What are the additional tests for multiple sclerosis diagnosis?

Hello doctor,

I am a 30-year-old female. Six years ago, I went to the ER for what I thought was a kidney stone. I was having severe left lower abdominal pain. A CT scan revealed diverticulitis. I was admitted and placed on IV antibiotics. Long story short, a week later, I still was not responding to the antibiotics, my intestines perforated resulting in peritonitis, and I had emergency surgery (small intestine and colon resection, removal of ileocecal valve, and temporary colostomy). Biopsy showed severe infection by Pseudomonas aeruginosa. I spent an additional three weeks in the hospital due to acute kidney failure. I had two blood transfusions (no dialysis) and finally began responding to treatment. I was 24 years old, generally in good health, and not obese. Eight months later I had the reversal. I did not receive nutritional counseling at any point.

Three years ago, I began experiencing dizziness, cognitive decline, and hair loss (and dullness). GP ordered blood tests which revealed a significant B12 deficiency. I had weekly intramuscular injections five times and was retested. B12 was still at 168. B12 injections continued but every two weeks until B12 levels returned to the 400 range. Injections were then monthly-ish and supplemented with sublingual B12.

At the tail-end of this B12 saga (now, two years ago), when the levels had been corrected, the left side of my face went numb. I was referred to a neurologist for an MRI. At my initial consultation, the doctor suspected I had multiple sclerosis. Symptoms in addition to numbness I had a stiff neck, headache, and problems concentrating.

MRI revealed that "the diffusion-weighted imaging is without evidence of acute ischemic injury. The brain parenchymal signal intensity shows multiple scattered foci of subcortical and to a somewhat lesser degree mild periventricular leukomalacia within both cerebral hemispheres. Mild signal change is also seen within the middle cerebellar peduncles. On the postcontrast enhanced imaging, there is evidence of enhancement involving at least three right frontal distribution foci as well as a single focus within the left medial temporal lob. This appearance is most suggestive of areas of demyelination such as multiple sclerosis, with the area's enhancement representing active demyelinating disease. Clinical correlation is recommended."

The neurologist then said I had probable MS (multiple sclerosis) and to start medication. At this point, I raised concerns about the B12 issues as well as eliminating other diseases (as I had a rash on my palms and had recently traveled). He said that if I wanted to be certain, I had to have a lumbar puncture. I was supposed to be tested for neurosyphilis at this point, but the lab accidentally "forgot" to perform that test, or so I was told.

Lumbar puncture results:

1. Myelin basic prot, CSF 5 in CSF, and not present in serum.

2. IgG, CSF 3.7.

3. Albumin, CSF 12.5.

4. IgG, serum 849.

5. Albumin, serum 4600.

6. IgG index, CSF 1.60 high.

7. IgG Synthesis, CSF 10.0 high.

8. Protein, CSF 26.7.

9. Glucose, CSF 53.

10. Appearance: Clear and colorless.

11. Nucleated cells, CSF 9 high.

12. RBC count, CSF 98.

13. Neutrophils CSF 4.

14. Lymphocytes CSF 84.

15. Monocytes CSF 12.

16. Cells counted for Diff 50.

And with that, the neurologist diagnosed me with definite relapsing-remitting multiple sclerosis.

I was advised to transfer to an MS specialist. That doctor concurred with the original diagnosis and laughed off the possibility of neurosyphilis, B12 deficiency, or other diseases.

Thinking that my intestinal issues and neurological issues may be related, I went to a gastroenterologist. I discovered that because my ileocecal valve had been removed, I would always have diarrhea (without taking bile acid sequestors) and did not have the ability (or had very limited ability) to absorb B12 from my diet. He recommended continuing with the sublingual B12 and injections (every other month). He ran a battery of tests to make sure I did not have any nutritional deficiencies.

I will just provide the results that were abnormal, taken ten years back:

1. Alkaline phosphatase - 25 low (according to my records, ALP had been low, albeit not this low, since at least 12 years back, having been tested three times previously).

2. CO2 - 21 low.

3. Neutrophil percentage - 74.7 percent H (had been high for ten years, tested three times previously)

4. MMA - 73 low (I do not think this matters).

5. B6 - 229 high.

6. IgA Blood - 449 high.

Due to the high IgA, he tested me for multiple myeloma with photopheresis. No M-spike detected.

And that was that. He could not find a reason for the alkaline phosphatase deficiency and did not provide anything further on the high levels of IgA.

I have continued with the B12 injections every other month and the sublingual as often as I remember.

Last month, the left side of my torso (under the breast) went numb. I would say I have recovered about 80 percent at this point and expect to recover full feeling within the next couple of weeks.

Other pertinent details:

1. Right before my face went numb, I had just returned from the country. I had probably received at least 300 mosquito bites.

2. Right before my face went numb, I was bit or stung by an insect in my bed that left a welt.

3. I currently have what I think are pimples on my scalp. I have had these for about one year.

4. Symptoms besides those already provided: fatigue, depression, anxiety, heart palpitations, dry mouth, acne, high blood pressure.

5. I do not have children.

6. I have not had any other episodes besides those described.

7. I have been told that when put under for twilight, I cycle through the medication quickly, which is why I remember.

8. I am currently taking Modafinil for fatigue, B12 as mentioned, vitamin D (I was also deficient), and Imodium three pills daily.

Finally, my questions: Should I just accept the MS diagnosis and get on with it? Should I be concerned that I was never tested for anything else? Should I have any additional tests? If so, which kind and which type of doctor should I see?

Please help.