Hi everyone I'm new to this group....I was dx at 27/ 54 now...
I never had any major lasting problems. Most of the time I never thought about ms except for a shot everyday for years, I ended up stopping those many years ago. My question is has anyone here transitioned to spms? I know that's what's been happening to me over the last two years with my walking.... I don't have insurance so I was thinking about acupuncture and Chinese herbs... any thoughts or experiences? Thank you
While I don’t know personally about this, I have read that people have had some positive experiences doing this. Good luck on whatever you decide to do and welcome.
Hi Jcglobal welcome 😊
I really hate to see how much you think you progressed. And without insurance. 😦
See if mymsaa.org can help you with that! 800 532-7667 😊
As far as the other things? I have no clue. Sry.
Jes🌠
Maybe you should be back on a DMT 🤷🏼♂️ Contact MS at 1-800-532-7667 and they can help guide you to grants and other ways to obtain medication 🤷🏼♂️🙏🐾Ken
Welcome Jcglobal, from Fancy1959. I transition from relapsing and remitting Ms to secondary progressive MS about 2 years ago. My original neurologist wrote me off and said there was nothing more he could do for me at that point. I left his practice and found a new one. One that gave me hope again and a will to continue fighting this monster. Without insurance I am not certain where to tell you to turn other than to contact the National MS Society at 800 fight Ms and see if they have ideas that might help you.
Are you officially disabled? How old are you? Would you qualify for disability under Social Security where you could end get some basic insurance to help you start treatments? Please get back to me with this information and perhaps we can develop a plan together. I'm going to be 59 shortly and I draw Social Security Disability Benefits due to my MS. I don't qualify for Medicaid, but at least the insurance I have helps a lot. Then there are many pharmaceutical companies that offer co-pay assistance programs that will help pick up cost of therapies too. I am currently on Ocrevus since last year and I had my first clean MRI earlier this month with no MS lesions that were either active or new ones that it popped up. Yeah!
Until we speak again please take care. I look forward to hearing back from you to see if we can help you to work out any ideas that will allow you to start some Ms Therapies. Always remember that together we are stronger in our fight to be the monster we call MS.
Thank you for everyone welcoming me, I'm 54 and was dx at 27. The ms society has helped me I was on amprya for a year but that's all they will give you. I don't qualify for Medicaid, when I was on Obamacare a few years back all the ms specialist would not accept it here in Texas.
I had health insurance for years, however by an act of God my husbands business which was a manufacturing plant burned to the ground and was a total loss. No insurance on the building because the owner wouldn't put in a sprinkler system that's another story......(no wonder my legs have stopped working)
So that is why I'm thinking Chinese medicine incorporated with acupuncture there's something to be said about ancient medicine. A lot of the drugs available scare me as well.... they talk a lot about pml
I'm not someone who talks much about ms, though everyday I wake up and get out of bed and am reminded. I listen to myself talk saying I've walked a lot today (going to the grocery store) is a mind f---, which I can't grasp. I was a professional dancer and a beautiful one at that. I danced on Broadway 8 shows a week in classes for hours a week in between shows. I don't expect to be my age and do that anymore but just the grocery store and I'm spent....good God this is brutal......
Forgive me for venting.......but I guess here is a great place to vent and help each other through. It's a great place to learn how everyone copes with the changes that are taking place. Sometimes I wish to have a cane but I can't bring myself to get one.
Jcglobal, it's Fancy1959. I am getting ready to turn 59. I have been on Social Security Disability since about 57. MS made it impossible for me to keep working. I am so far about 18% of what a woman's hands why it should be. I have no fine dexterity and note that I feel sensation left in them. You are elig at age 55, for much lower standards to meet to start drawing Social Security. You should check into apply for Social Security. It's a long drawn-out affair and very frustrating to say the least. Through Social Security office was able to sign a policy with Humana and it covers my social security benefits somewhat. Enough at any rate. Like I indicated earlier many Pharmacy companies offer copay assistance for the drugs they manufacture. I understand your concern over the side effects of some of the therapies, but over the long term I want you consider the damage done by your MS, if you do not take anything to slow down the progression of your MS. If going to the grocery store wipes you out today next year or the year after how much less will it take to wipe you out. Will you be able to walk? Will you be wheel chair-bound? These are chances I was not comfortable taking. I know I am not going down without a fight!
Anytime you need to talk, or to voice concerns that's what we're here for. We have big shoulders and part of what we do best just letting you vent your frustrations and offer different viewpoints to help with lighten your load! I look forward to talking to you soon. Until we speak again please take care and remember together we are stronger!
I've have had MS since high school days but went undx till 2007 by which time I had moved from RRMS to SPMS. MS is a complex animal okay beast. Acupuncture and/or Chinese herbs may help with symptoms you might be having, however the MS is still progressing so I would suggest you find some insurance or think about going on disability to get Medicare. You might be able to get on Medical in the mean time. Others have used LDN [do a search for LDN to get more information] instead of traditional DMTs so that might be an option for you. You will need to find a good Neurologist who specializes in MS.
Welcome to a wonderful site to ask questions and find all sort of support and great people ~terry
Welcome to a great place filled with supportive people. I hope you get some answers quickly about treatment options.
I think I have SPMS
At least that has been suggested by my neuro and since I have had no MRI changes X diagnosis 12 yrs ago but symptoms continue to progress, that seems about right.
I'm also on no DMTs X 10 yrs by choice. I'm 59.
Recently had solumedrol infusion that helped greatly and was told I have spasticity interfering with my walking.
The steroids and stretching have made a huge difference! My neuro has suggested Ocrevus (but I do have insurance)
Please let us know how it goes if you try accupuncture or herbs.
Question about tx for SPMS
Heart problems with MS?
More on stopping DMT's
Optic Neuritis Challenges
New to this...but very scared
