This Is MS Multiple Sclerosis Knowledge & Support Community
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge. https://www.thisisms.com/forum/
I have a follow up appointment in 2 weeks. The neuro called me by phone after he looked at the MRI to tell me it is definitely MS, he shipped me a box of pamphlets of MS drugs and pretty much told me to pick one. I have no idea what to do!!!! Im 50, so a late diagnosis with multiple (he wouldn't count, so I'm assuming a lot) lesions in brain and C-spine. Does anyone have any suggestions on first line therapy? I really want to hit it hard but I don't know if certain drugs are given to a first timer/drug naive person. Apparently my MS has been long standing with symptoms for years but didn't get checked until January of 2017 with left arm numbness and weakness. I am left with some numbness and daily dizziness, some vertigo. All opinions are welcome!
Re: Just diagnosed RRMS. What drug should I take?
Posted: Wed Aug 09, 2017 10:08 pm
by NHE
Bermers wrote:I have a follow up appointment in 2 weeks. The neuro called me by phone after he looked at the MRI to tell me it is definitely MS, he shipped me a box of pamphlets of MS drugs and pretty much told me to pick one. I have no idea what to do!!!!
MS Neurologists really ought to be shot in the foot for doing this. I can think of no other disease where the doctor says "Here, pick a drug, any drug." When I was diagnosed, my doc did the same thing. However, I was in grad school for a cellular biology program. I spent about a month with the proverbial fine toothed comb and a medical dictionary going through the Prescribing Information papers for the three ABC drugs available at the time. I wound up choosing Avonex since it seemed like the lessor evil of the three. However, they all have their downsides. If your doctor isn't willing to discuss the differences between the meds with you, then get a new doctor. Really! Some of the meds can make you prone to developing a condition known as progressive multifocal leukoencephalopathy (PML). PML can be lethal. For those that survive, there's about an 80-85% chance of becoming moderately to severely disabled from the PML.
Here's something your doctor likely won't tell you. Have you had your vitamin D3 levels checked? If D3 is low, then raising it by 30 nmol/L can reduce relapses by 41% giving it as much efficacy as Avonex.
I decided on Rebif, interferon beta 1 a. The reasons:
A) One of the most safe drugs. As NHE says, PML is no joke. Rebif is minimal risk for PML. Absolutely acceptable.
B) I have acid reflux problems in the past so tablets are risky for me.
C) 3 times a week injections, not daily (injection site problems) or once a week (more side effect).
D) I pay 25USD monthly for it
Prepare for some side effects in the early months. I had fever for 3 months. Rebif messed up my liver enzymes. Thanks my body is adapted now, liver is OK.
Re: Just diagnosed RRMS. What drug should I take?
Posted: Thu Aug 10, 2017 11:08 pm
by NHE
NHE wrote:
Bermers wrote:I have a follow up appointment in 2 weeks. The neuro called me by phone after he looked at the MRI to tell me it is definitely MS, he shipped me a box of pamphlets of MS drugs and pretty much told me to pick one. I have no idea what to do!!!!
MS Neurologists really ought to be shot in the foot for doing this. I can think of no other disease where the doctor says "Here, pick a drug, any drug."
Give them the MS simulator shoes.
Re: Just diagnosed RRMS. What drug should I take?
Posted: Fri Aug 11, 2017 1:01 am
by Scott1
Hi,
Aged 50. Symptoms mild (with apologies). Pushy doctor. No useful support. I'm not surprised you feel a little lost.
I'd wait and have a good look round. There's plenty here and the views can be diverse. Diet, supplements, exercise, your environment are all things you can look at and try to control.
By no means is it the only way to approach things but I would say it's superior to the rubbish you have been offered as advice. It seems only Tarot card readers and neurologists charge their customers to pick their own destiny.
Regards,
Re: Just diagnosed RRMS. What drug should I take?
Posted: Fri Aug 11, 2017 5:02 am
by vesta
Greetings: No need to rush into a drug program.
MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH
1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements
3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI
AND STIMULATE ANS Autonomic Nervous System
(See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such as massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein. Best diagnostic tool – FONAR Upright Cine (as in cinema) MRI)
If available, consider DR. Arata’S TRANSVASCULAR AUTONOMIC MODULATION (CCSVI plus massage) or Dr. Owiesy’s injection of a mixture of dexamethasone/lidocaine/thiamine in the area around the Internal Jugular Vein. Outcomes have been impressive, risks and expense minimal. (Probably not yet available.)
4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.
5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help.)
Be creative. Tif of ThisisMS has recovered function with Neuromuscular electrical nerve stimulation in the Onyx Body Shaping and Slim Spa which uses “Madame and Monsieur Electro-Slim Technology”. Hugo Macia (http://www.secretosdelaesclerosismultip ... pot.com.es.) is testing on himself a German made Neuromuscular “jacket” to regain function. See https://www.miha-bodytec.com/en/product/
He has brought to my attention the Bio-Magnetic Pair therapy used widely in Spanish speaking countries. It may prove useful as an “energy” therapy like acupuncture, in this case magnets are used to harmonize the body’s electro-magnetic field. Maybe worth a try.
I also use the homeopathic remedy Oscillococcinum by Boiron to head off a virus.
