Hi,I am Nani5.Iam new here. I was diagnosed in1992 at age 48 with PPMS. There were not many options then. I took oral Baclofen until I got an implanted pump in 2007. Along the journey my kids graduated from college and married, I progressed from cane to walker to wheelchair now I use a powerchair and have a lift van for transportation.My most annoying symptom is burning in my legs and constant tingling.Tried Many meds and spinal treatments ( pain management Dr. didn't help)I lost hearing in my right ear caused by nerve damage hearing aides won' t help. Dr. suggested keeping radio on to help with the ringing . It is frustrating to read about all new treatments for RRMS. By the way marijauhna did not help and is expensive. I have a wonderful husband and kids and grandkids . Being so dependent bothers me to no end.In 2015 I broke my tibia and fibula in my left leg landing me in a rehab facility for 10 weeks and haven't been the same since.I have been going for physical therapy for most of the time I . It does help .For 24 years I still go through periods of resentment. I can't ignore the pain which is constant. I did go to support group but I was the oldest and 1 of 2 in chair. My neurologist is great and waiting for the new med. to become available. So that's my Iife ! I am waiting for a cure-so many drugs and treatments have become available during my journey with this disease All I can do is hope.
Do you ever get to the point of acceptin... - My MSAA Community
Do you ever get to the point of accepting your condition?.
Hi Nani5, I too have PPMS. I was dx in October 2010, 6 years ago now, they say time flies when you are having fun!!! They said I had already had it for about 20 years, it just needed something to trigger it to get worse. Well I had a severe fall off my horse, 14 years ago, I kept going to my doctor, but they wouldn't listen. Finally they did a full MRI and found my spine had a few lesions, followed this by a brain scan, and my brain was full of it. After having major spine surgery, a transthoraxic discectomy, my condition declined. Because I have restless leg syndrome as well I take Pramipexole, pregablin, OxyContin, and cocodamols so I cannot take anything for ms, so I grin and bare it. The drug cocktail I take for the RLS dulls the pain, but they tried me on one medication, but I had a really bad reaction to it, so like you I am waiting for this wonder drug to be made available. I try to keep my mind busy, but I found today that holding a pen is becoming worse, my writing is worse than my 3 year old grandson. I have just read an article about yoga improving ms, so I am going to give it ago. All we can do is keep smiling, hoping and praying, and for me indulge now and again in my favourite chocolate.
Nani5, how fortunate you are to have such a loving family and a neurologist that you like. I wish your load was lighter; I can't even imagine your worst day. But I love how you ended your post-with hope. My prayer is that ocrelizumab will be approved as promised, and that it is the hope all those with PPMS have been waiting for. My heart, prayers AND HOPE are with you!
I accepted the diagnosis, but not the pain, tingling, fatigue and other mess that comes along with it. I was formally dx in 2013, but i was showing symptoms since around 03. I have RRMS, I think. They haven't given me a definite classification. I have been on so many medications that it's scary at times to think about. I have been blessed to have been able to get out of the chair after a 3 month spell of leg paralysis, that came on without warning. Since then, I've used a cane on a regular basis and a walker on the bad days. I hope they find a cure or the cause so that others won't have to go through what we have but in the meantime I continue to love my husband, kids and grandkids
Hi, Nan
I also have PPMS. I go to acupuncture once a week. It helps to decrease my leg spasms. And I go to massage therapy once a month. I also take pure biotin, 300 mg daily. It makes my legs feel stronger. Monday I walked 1200 ft with walker. And I can now pedal stationary bike. Ask your neuro about it.
Hi plosed, I have a stationary bike that I can pull my chair into. I now have edema in my lower legs the bike helps a little.I take 10,000 mcg of biotin I don't know if it helps. I also have an old standing machine that lifts me into a standing position to help my core and legs. I never thought I would be spending so much time on me. I was always helping others with rides to appointments.,grocery ect.
Thanks for your interest.
!0,000mcg of biotin is not enough. In the trials the most effective dose was 100 mg 3 times a day. 10,000mcg (micrograms) is 10mg (milligrams). The cheapest way to get it is as a powder from Pure Bulk. You then get a set of measuring spoons (from them) and the 'smidgeon' size one is close enough to 100mgs. It's easy and tasteless. Good luck.
Sorry I should have included this link for more info on biotin.
Hi Nani5 l really like your title. Cause lm still so very angry about having this let alone accepting it. If it wasn't for my phone alarm l would forget to take my shot. And gladly forget to. Cause l dont see the point. If it's going to happen it's going to happen in book. But like you l have my grand babies to keep me going and have to belive in HOPE. HOPE for a CURE, HOPE for RELIEF, HOPE for a MIRACLE. As long as there is hope, all is not lost in my book.
Welcome to our chat 
Have a seat and make yourself at home.
i believe im still in denial over my condition but after taking a walk yesterday i truley feel it in my body today and lastnight was the most annoying feeling i have had in a long time
I have accepted but still grieve the old me. I an a paraplegic since 2009 and had to give up career in 2013 and treat ms as my full time job. Dependent on aids in home to dress, shows, etc. Estranged from 30 yr old daughter because I'm a bother. But I keep my faith, do art, volunteer two places, enjoy dad and son's love and try to embrace my new normal.
Shame on your daughter. One way I get through this disease is thinking better me than my kids and grandkids . No one knows what the future holds.Now that my grandkids play sports,Isee all of them less.I go to games when I can but not many place are handicapped accessible . Invite your daughter for pizza and maybe start a monthly tradition. I know how it feels t be lonely even with people are around. You are not a bother .You haven't changed inside . Maybe you have to be brutally frank about MS and share with her your symptoms. At the end of the day family is all we have. There are still things you can do together:organize old photos, watch a movie.She will need you someday and I know you will be there for her.
I had to turn my daughter life to God. Too brutal and stressful for me. Puts my ms. into tornado strength. My son n dad love me for me. But thanks! I have a service dog who gives me amazing support so I never feel alone. My art is my escape. Blessings
Hello Nanni5 this is Fancy59 welcome you to this wonderful chat room. When the blues grabbed me and sometimes I wonder why this all happens to me I have to remember the good things that are happening in my life. I've got three sons so happy and healthy, a beautiful daughter and two grandchildren in Atlanta, and a loving husband. I've had Ms for close to 20 years now I'm still using a cane on good days but I'm bad days either use a walker or wheelchair. The point is though I still get around. I'm sure much like you do. I often think of my two sister-in-laws, one who had pancreatic cancer and was dead less than two years after she was diagnosed and the other dead less than three years after she was diagnosed with breast cancer. When I think about them and their grieving families I feel pretty darn lucky to have MS. It could be so much worse. I will live to see my son's marry, I will watch my grandchildren grow up in Atlanta and hopefully be blessed with more grandchildren from my son's after they marry. My, our, life's reality has changed since we've contracted MS but we need to understand that we still have a future. What we choose to make of that future is up to each of us. Opening your heart up to the good things in your life will put a smile on not only your face, but on your heart, and your life as well! Focus on the good and the good shall rule your life! Please keep in touch.
I was divorced before dx and had relocated too. Local television of new normals.
Hello there! Is knowing that I'll beat MS a form of denial? Or is it a fight? I'm refusing to allow MS to have my life!! I have a lot to do! MS can't have everything...I've decided, and declared that I will be victorious. God says I win!
I was diagnosed 5/15/18 and was so happy to be told that, after 3-4 years of being exhausted, that it was MS. Then when I found out they didn't really have a pill to make it go away or seem to be able to "fix it" that was frightening. Everytime that I've had a health problem previously, there was a pill or surgery that took care of the problem.
Ive come to accept this disease as there are many other health problems that would be so worse. When I told my boss of the DX and he said: "Life will throw everyone a curve ball - this is yours. Knock it out of the park!"
Nani5, I'm sorry for your situation!! We sound similar with our problems, you have been at it longer than I have, my Dr's don't think my examples incidents since high school are evidence of symptoms. MS meds I have had haven't worked very good or made me sick(Tecfidera). Like you, I have the terrible burning, pins and needles and pain/spasticity. I also have it in my arms and hands too. I wasn't DX'd until 2012, some of that was because of a workers comp claim for a back injury 2001 that I think is related to MS. I was in a power chair most of the time but due to diet change, not feeling good enough to eat dinner very often, I have lost 75lbs.. I us a cane and walker on long walks. I do have siezures though too that started a few years ago.
Hi Nani5, there are days i feel whipped but cant say this is all......Hope is so important and the root that grows the tree.Your tree of hope and how far you have come is a great example to us all.ty
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