Welcome to ThisIsMS, formymommy.
I am so sorry to hear of your mother's situation. I have not yet experienced the MS "Hug." I do not work with an MS clinic or a neurologist – our relationship was left on an "as-needed basis" since the cause of MS is unknown and I do not believe there is currently an effective treatment. I am quite satisfied to work my GP.
Since your mother has had MS for a long time, do you know if she has ever been tested for a possible vitamin B12 deficiency? If not, I think it would be reasonable to request testing orders (for serum B12, serum folic acid serum homocysteine, and urinary
methylmalonic acid tests) from the pain specialist or her GP.
Has she been tested for a gluten sensitivity? Such a sensitivity can damage the intestines and interfere with nutrient absorption (possibly leading to a B12 deficiency?).
"Everything You Want Your Doctor to Know about Vitamin B12"http://www.youtube.com/watch?v=BvEizypoyO0
I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses
); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).
@1:23 "The neurological manifestations well precede the hematological manifestations."
@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."
"Chest pain" and "Difficulty breathing" are listed among the symptoms of B12 deficiency near the end of the video; might this described the MS "hug?"
We are glad to answer any questions and share our experiences. All the best to you and your mother.