Newbie saying Hello😄

[CalfeeChick]

Hi, New to the site and just diagnosed a month ago. Interested in chatting about treatments and results.. Hoping to start infusion treatments soon. I'm 68 any others out there just diagnosed at older ages? I'm numb/tingling from waist down. What are your symptoms? #CalfeeChick ....Lynn

[Froggiechick]

I just got diagnosed on 7/28/16 I'm 26 I've been having symptoms for like 6 years now but the one that finally triggered the Drs attention was bad what I thought was migraines but they triggered my eyeball and the nerve. The neuro said MS right away and I had to have a spinal tap to confirm because I couldn't get an MRI! I had surgery on Sunday and got the stimulator removed so now I can start treatment abs get an MRI. I have to be careful on what treatments I do because I'm also a diabetic. My dr wants to start me on GILENYA. I see her Friday so I will find out what we are doing!

[CalfeeChick CommunityAmbassador in reply to Froggiechick]

Thank you for reply, sure wish you well with treatments. I was diagnosed on 8-3-16. I had no symptoms until June 28 when I started going numb on right side from ribs down. Woke up on June 29 at 4am and thought I'd had stroke so went to er immediately. No answers there after many tests. Left side went numb after we left er. Went to ortho doc, xrays and spinal mri, no results. Took almost a month to get into neuro doc and get brain and thoracic spine mri which confirmed MS. Now because of my age of 68, UCSF wants to evauluate and possibly treat, so no treatments and am waiting for 9-13-16 appt. We want to do aggressive treatments, probably infusions of tysabri. Until I went numb, I was long distance road bike rider averaged 150-200 miles a week. Mom of 2 daughters, step mom to son and daughter, 8 grand-kids. Now I'm barely walking with numb/tingly feet. So am making craft gifts for Christmas and charities. Lynn

#CalfeeChick

[Froggiechick in reply to CalfeeChick]

Isn't it aggravating when they can't give u answers? that's crazy that your only symptom was numbness like that! The Drs used to just blame everything on my diabetes but I knew something else was wrong!

[CalfeeChick CommunityAmbassador in reply to Froggiechick]

That's still my only symptom, besides some bathroom problems..backside feels like it's frozen. I have no pain, just discomfort and inconvenience. Obiviously, not able to drive or ride bicycle. Minor balance at times.

[Sukie427 in reply to CalfeeChick]

Be careful with Tysabri. Ask your neuro about testing you for the John Collins virus before you start it. If you are JC virus positive, Tysabri has a higher incidence of causing PML, which is an infection of the brain that is often fatal. I know of quite a few patients on Tysabri that are doing very well, even a few who were JC Virus positive, but Tysabri was a drug of last resort for them because of the risk of PML.

[Royjr]

Hello CalfeeChick, while we all have different symptoms, we do have some of the same issues. Me, I have a mild balance issue, weak hip flexor which makes walking a slight problem and issue with fatigue. I'm on Tysabri every four weeks and for me that's the best treatment. I receive monthly Infusion at a Infusion center for two hours (1 hr receiving the medicine and 1 hr for observation). I take vitamin D, multi vitamin and watch what I eat. I use a rollator walker (3 wheel walker) for stability while walking outside. I still drive but with some physical assistance.

It sort of unusual being diagnosed at your age. Have you symptoms earlier but didn't get diagnosed? This disease is very difficult to diagnose because the symptoms can show itself today and be gone tomorrow.

Try to stay as active as you can and we are here if you want. Good luck!

[CalfeeChick CommunityAmbassador in reply to Royjr]

Dr thinks I may have had it for some time with no symptoms. I only recall 2 times that the heat bothered me, but I was riding bicycle in hot weather. Heat really bothers me now..

[CalfeeChick CommunityAmbassador]

Thank you for Reply Roy, Tysabri is what we want to do. I was diagnosed on 8-3-16 after brain and thoracic spine mri's. Now because there is not much research on older patients, UCSF wants to evaluate me and possibly do treatments. Did you have blood antibodies checked? Did you have antibodies for JC disease or Crutzfeld Jacob disease? You don't have to answer if you prefer not. Lynn

#CalfeeChick

[jimeka]

Morning Lynn, I live in the uk, so it is morning here. I am 60, only found out 6 years ago that I have PPMS, after having come off my horse 8 years previous. I underwent surgery, had MRI's confirming it. I too used to ride a bike, but now I have a trike, with a basket on the back which my dog sits in. I also have a number plate on the back of the bike, 'FREEDOM' and it is. I too lost my balance, I have walking sticks, 3 and 4 wheeled walking frame. I have just had a holiday for 2 weeks and managed to walk everyday with the 4 wheeled frame. I could have sold 10 of them my husband said if I had a porsh 11 and left the keys in it no one would steel it but my walker was the talk of the complex. Hope you can find your own freedom, good luck with finding the right med for you. Cheers Jimeka

[Donna_uno]

Welcome aboard. I'm 66 and was diagnosed a year ago this month.

This is still pretty new to me.

I mostly have leg pain, tingling, and sore spots that feel like bruising. There is always something new. Oh yeah, Lots of fatigue.

I thought I was the lone ranger when I got diagnosed at my age.

[CalfeeChick CommunityAmbassador in reply to Donna_uno]

Hi! Your symptoms sound much like mine, except I don't really have pain, numbness, tingling and my ribs feel sore as if I'd pulled the muscles. Yes, I also have fatigue and take many more naps. My feet feel like they are in blocks of ice so no driving or bicycling for me. I was a long distance cyclist before I went numb. Averaged 150-200 miles a week. No treatments for me yet, waiting for authorizations, etc. We want to try aggressive treatment with Tysabri infusions. What medications have you tried and what worked? What was the time frame it took to feel any remission? Thank you for contacting me..I've felt all alone in my quest for information and research. Lynn

#CalfeeChick

[whitchurch54]

HI Calfee Chick. I was diagnosed at 59 and they also said it was unusual at that age. I am62 now and on Gileyna. It will be 2 yrs. in December since I started Gilyena. Unfortunately now I am experiencing the side effects of flu like symptoms(miserable). I still work full time(have to) so the side effects are very inconvenient.. Good Luck with everything

[Sukie427]

Welcome, Calfichick. Sorry that you are now a member of this club nobody wants to join. I was 57 when diagnosed, and I was shocked. I thought that MS was a young person's disease. Boy, was I wrong! Be your own advocate. Sit down for a good heart-to-heart with your health care team and work out a treatment/management plan that's right for you. Your best weapon against this miserable monster is information, so get plenty of it on all of the treatments, especially those that are recommended by your health care team. Also look into alternative treatments like those that are holistic, discuss diet and exercise. Learn the side effects of everything! Good luck!

[mik48]

Hi! I'm 68 and was diagnosed 6 years age like you I have tingling,drop foot and pain on my left side. I started with Avonx, which was a weekly shot intercultural, but have switched to Plegrity which is is subdurmal which you take every 14 days but ask your Dr. first.

[Babslover]

My symptoms are not being able to walk around without my walker, l don’t work and I don’t drive. I had an accident but didn’t hurt anyone just totaled my car. Thought my foot was on the break but it wasn’t. That was 5 years ago. I decided to give up my license.

[MtnMermaid]

Hi CalfeeChick, although your initial post was years ago.it caught my eye because we are in the same age range and diagnosed later in life. I love the photos and the positive approach you seem to have.