This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,

I am new on here and desperately seeking advice for my mother. She is a long time MS sufferer. For the past two years she has been dealing with The MS Hug.
She has been on Baclofen for about four months and it isn't helping. She started Neurontin about a month ago at 600mgs and as of 5 days ago she is now at 1800mgs.
The only medication that has given her a wee bit of relief is Lorazapam. She is taking that about three times a day. I do worry about her usage of that drug. It is a dire circumstance though so hopefully that is OK for her to be taking so much of.
She went to the ER yesterday (there isn't much they can do for her there) and he prescribed Cyclobenzaprine 10mgs before bed.

She tends to have two or three really bad days where she is in bed then she will have one or two better days. Generally the bad days are taking over the good and they are getting worse.

I am looking for other people that have this symptom of MS and how you have dealt with it. What medications or treatments you have had success with please.

She has an appointment with a pain specialist this coming week and I am trying to gather some information for her.

She also has a problem with receiving proper care. The MS clinic that she has been to in the past isn't offering her any help at this point. Beyond the pain specialist I am also researching a better doctor for her.

Do most people with MS belong to an MS clinic or do you work with a neurologist for medication.

Any advice, information or insight is greatly appreciated.

Thank you

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"



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.