Update

[Chevy_mama]

Hello everyone ... first to everyone effected by Harvey you and your families Are in my prayers . Today was my appt at the ms clinic & it wasn't the best news I have 11 lesions now & the dr told me that my sight will only get worse . I can't see at night or in the dark at all anymore . I hope that the new meds I'm to start will help . Feeling A-little down today trying to cheer myself up . Hope everyone is well and I'm so glad this group is here

[Juleigh21]

I'm so sorry to hear about the new lesions and your eyesight 😕 I hope the new med works extremely well and you quit progressing!

[Chevy_mama in reply to Juleigh21]

Thx Julegh

[Morllyn]

Chevy_mama , I hate to hear That!😯😟

[Chevy_mama]

Me to it was a kick to the guts !! I'm praying to god things improve with the new meds

[WAshingtongirl]

That had to be hard to hear, Chevy_mama . I'm sorry. I pray the new med helps stabilize your vision and MS progression. Sending you a hug for today's news, and hope for the future. 💕

[Chevy_mama in reply to WAshingtongirl]

Thx Tutu xo I appreciate your prayers and kind words

[Doubled51]

Chevy_Mama. So sorry to hear you have new lesions. In June my MRI showed 4 new lesions then in August there were no more new ones. Praying for the same results for you. Praying he's wrong about your vision problems. We are always here if you need us.

May God touch you in your time of need.

Donnie

[Chevy_mama in reply to Doubled51]

Donnie thx so much I've had 6 new lesions in 2 months . My eyes sent from -3.75 to -5.25 in 5 months . I forget what they called the problem with the eyes but it's similar to glaucoma and people with ms get it . And a new symptom started about a week ago my feet get so hot that I feel sick a over whelming heat sensation . I've never had it before . It's just hard as my partner of many years left me as he said he couldn't take my ms anymore . So now it's me again & my daughter as my son moved out & my daughter moved home to help me out

[SueAB in reply to Chevy_mama]

Chevy_mama, Talk with your neurologist or even your PCP about your hot feet. I was prescribed Gabapentin for that symptom.

[Sukie427 in reply to Chevy_mama]

I am so sorry to hear that, Chevy_mama . If he can't handle it then you don't need him anyway. God bless your daughter for coming to help you, and God bless you. You are tough as nails. Hope the new meds work for you and that the progression slows down. You know, prognoses can be wrong, especially with this unpredictable disease. Wishing you many more years of seeing beauty in the world. Is it optic neuritis that you have? Sukie427

[RoseySawyer in reply to Chevy_mama]

The feet thing is crazy. Sometimes when I lay down I get hot feet to. Like a fire numbing sensation. I hope it gets better. I was told it's pretty normal.

[Chevy_mama in reply to RoseySawyer]

Hi Rosey I only started with the hot feet A month ago and it's crazy . But I've been having the ms hug for awhile now and i can't take it much more it's so terrible

[Doubled51]

I'm so sorry about your vision. My wife has type2 diabetes and Is going thru similar problems. She's due for exam next month and if they've gotten any worse she will be declared legally blind which her sight loss is her biggest fear of all. I know it's very scary. I 've watched her worsen for years and even though it was predicted then it still doesn't help.

Sorry about the loss of your partner. Even though mines still her I have very little support with my ms. I commented on something yesterday and mentioned ms and was told that everything I said had to be about ms. That she was a diabetic and she didn't talk about it all the time. Maybe true but she has been a diabetic for many years and adjusted to the fact. I've been dx with ms for 5 months. No I haven't totally digested it all yet but give me a little time. And I've gotten these comments several times. Maybe someday ill learn to keep my comments to myself. I go Tuesday to get results of my cervical MRI last week. Donr know what to expect but new symptoms just keep on coming from somewhere. Glad your daughters there for you. Good luck and God bless you my friend.

[Doubled51 in reply to Doubled51]

@chevy_mama my feet are totally the opposite. They stay frozen all the time. I in thick socks now watching tv. And I'm a country boy. I hate wearing shoes and socks. Lol.

Donnie

[Chevy_mama in reply to Doubled51]

Oh I am a barefoot girl country girl !!! Thx Donnie

[Sukie427 in reply to Doubled51]

Hey, Donnie. My husband is a wonderful man and we just had our 39th anniversary. When he had his stroke in 2005 I worried over him like a mother hen. When I was diagnosed 10 years later with the MS, although he tries to understand, he doesn't fully and quite frankly, I sometimes very surprised at his reaction to my verbalization of how I am feeling. I have, however, found a mentor--she has had MS like forever and is in a wheelchair. She also has become nocturnal and cannot sleep during the nights so can't come to some movement exercise classes because they are in the mornings. Last year I was in the middle of a relapse at this time, and I was having such difficulty with everything, and of course my depression just got worse. She and I had a very long talk. I was diagnosed at age 57 in 2010, and she told me that I was still in the stage where I was learning to accept the fact that I had this disease and that I was just at the start of my journey. She also said that many people will not understand and will either just stop associating with you or become distant. Fortunately that hasn't happened yet, but I do absolutely hate it when I am stumbling around at 10:00 in the morning and I see people looking at me with disgust because they think I am drunk. I know that they sell T-shirts that say "I am not drunk, I have MS" but I don't feel like I owe anyone any explanations. Sometimes my husband is less attentive than he ought to be, but I have learned that when it comes to supporting or caring for me, he is not a self-starter as I am, such as when I helped him recover from the stroke and just last March from a full knee replacement. I have to ask him to do things for me, and sometimes I get very irritated because I think he should offer to do certain things without me having to ask, and sometimes when I do ask he acts as if it's an inconvenience of a bother and that often leads to arguments. But since 2013 when I was forced to retire because of the disease, this has been our new normal. I'm not sure that either of us has yet learned to cope with it. I actually am in psychotherapy about it, and I believe at some point he is going to have to join me. I know that he loves me very much and I love him as well, for better or worse, and now we are at the "worse" part. I need him beside me on this journey, and I know that he wants to be there, but I'm not sure that he knows how. But then again, how could he know how when I don't either? I guess it takes time and patience, but I know that we will find our way together. Good luck finding your way as you start this journey, and I hope that your partner loves you enough to help you. Sukie427

[Doubled51 in reply to Sukie427]

@sukie427. I know she loves me and I love her. Nov.6 will be 47 years together. But you're right I shouldn't expect her to understand what I don't understand. She does stay on me about taking it easy and not doing things that I shouldn't.. Like walking without my cane. She accepts that I'm not the same do it all that I was but she gets upset when I mention the word ms. Makes me feel like I'm using it for an excuse for stumbling and bouncing off the walls and when I fall I get the old well nobody told you to do that comment. I know she cares but she just shows it in funny ways. When I was in the hospital with my first exacerbation and. Ms diagnosis she was there for 5 straight days. To start with I couldn't so anything I had to take it easy. But since then things have gone down hill. She doesn't hardly ever mention her diabetes unless her levels get out of whack so I'm supposed to do the same I guess. But my walking is always out of whack so I guess I mention mine more than she does. I'm in physical therapy now trying to get some strength and stability in my legs but I've accepted the fact that things will never be the same. I guess as long as I don't mention the word she's ok. Its not an excuse its a disease and not mentioning it won't make it go away. Good luck to you and thank god for the understanding people on this site that we can come to to talk about these things. And yes we will make it. Thank for your encouraging words.

God bless and I love you all

[Sukie427 in reply to Doubled51]

Don't discount the value of psychotherapy or couples' counseling. You are probably not ready yet (It only took me 7 years to get going) but keep it in the back of your mind. Things don't have to get worse.

[Doubled51 in reply to Sukie427]

@sukie427. I certainly believe in counseling. I was under psychiatric care for 8 years for depression and anxiety after my back surgeries forced me into disability in 2002.

She does remind me often that I better be good to her because the way my ms is progressing I'm gonna need her. So she does accept the diagnosis she just doesn't want to talk about it. She is the first to say not to try walking in the store or anywhere without my cane even if it's a good day that occasionally happens. Every now and then I walk fairly straight so I try pushing things. But as I posted here before it's much better to take it all the time cause after you hit the concrete its to late. So she does care she just doesn't show it well. Blessings.

Donnie

[Sukie427 in reply to Doubled51]

Blessings back at you. Take care.

[SueAB]

Chevy_mama , So sorry to hear about your sight! I used audio books when I had double vision. Have you tried them? DEGU - "Don't Ever Give Up"!

[Chevy_mama in reply to SueAB]

I do I love audio books & lots thx for advice

[Diva1976]

So sorry you received bad news Chevy-mama. I'm hoping the meds stabilize things for you.

[Chevy_mama in reply to Diva1976]

Diva you are sooo kind big hugs

[Iona60]

Chevy_mama So sorry for the bad news. There is always hope that the new meds will help! I also have visual problems and listen to audio books on my phone. You can get them free online from your library using the Overdrive app or old ones in the public domain from librivox.org/ .

I also like to listen to newspaper articles and many other readings at washear.org . You don't have to join, just look for the archived link.

And, I can't forget podcasts that I listen to all day long. I use the free Podcast Republic app on my phone. Hundreds of free podcasts to chose from.

Hope this helps. You are not alone.

[Fancy1959]

Chevy_mama, Fancy1959. We're glad you're here too because our broad base of members make us the awesome chat room we are. I hate to hear about new lesions on anyone but what I really want to know is how have they affected you? Sometimes we have lesions and we fight through them and they have relatively small impact on us. Then other times if they happen to pop in the wrong spot they can rock our world. I'm curious about your what's therapy you're speaking of. Are you on any therapy right now? If you don't feel like talking about it you know it's up to you and you don't have to feel pressured. I want you to be thinking good thoughts and doing your best to look past the doctor's news and live your life to the fullest. It's what we all need to do and sometimes we get so bogged down in the medical diagnosis and the disabilities we face we forget about living our life. Remember together we are stronger and never let MS knock you down without getting back up. Fight on MS Warrior fight on!

[Chevy_mama in reply to Fancy1959]

Thx Fancy .... I appreciate your kind words

[4fishylady]

Chevy_mama I too, am so sorry to hear of all the issues you are having to deal with. You are in my prayers. I will pray for a miracle that you will experience a reversal of these symptoms. That can happen! Do not lose hope! All of our doctors are "practicing" medicine. They can at times be wrong. Think of all the people with MS who could not walk at one time, yet a year or so later were able to run! God still works miracles, even today. Our bodies and brains are awesomely made by our Creator and He is the greatest Healer of all times. Go to Him. Christian brothers and sisters, lets all unite in this prayer for Chevy_mama, to bring heavenly healing to her eyesight. Pray now!

[Chevy_mama in reply to 4fishylady]

Thx so much ..... 4fishylady , my vision is very blurred & has been for a few months . Seems to be worse the more tired I feel. With RRMS I've come to realize no 2 days are the same . Everyone here is so supportive & kind & I've come to enjoy our messages & kind words a lot. Btw my name is Cat everyone nice to meet everyone

[Doubled51 in reply to 4fishylady]

Amen.

[Hidden]

I'm so sorry to hear your MS has progressed, and what more you're now dealing with. You and others I read about in this community amaze me with your strong spirit and coping skills in spite of what MS has taken from you. You give me hope that I may be able to stay as strong as you in spirit if my symptoms progress to such extent. I tell my children and grandchildren that though they may suffer great loss physically only they can give up their spirit. You and others here certainly demonstrate that in what I read of your posts and replies. I hope I can live up to my words if I'm ever faced with such loss of my physical capabilities and potentially intense and constant pain. You are in my prayers. Even though we can't understand his purpose trust in the Lord. He is with you.

Michael

Michael

[4fishylady]

Chevy_mama I forgot the issue about hot feet. I have that problem and have gone over each of my meds information, and have eliminated or changed, with the drs help, those that listed "burning" in their side effects. Most of it is gone, except when I'm on my feet a long time. I do have neuropathy, and it may go along with that. I change shoes frequently but have to wear something, due to arch issues. When I can, I take them off, and when traveling use a wet towel under my feet. A cool foot soak also helps, as well as an Aspercreme foot massage. I take gabapentin, but not as much as the drs have prescribed. If it was worse, I would take it more frequently, but I only take 2 - 100 mg pills, 1 in the evening and 1 at bedtime.

Another thing, the Neuro who diagnosed me put me on Tecfidera, and it seems to be working wonderfully, going on my 2nd year. Praise the Lord! OK, in frustration with my sleep issues, I sought the opinion of our local Baptist Hospital affiliated MS specialist, (who was in med school with my Dr.) She saw me 1 time, with all my MRI's in hand, and decided that I had PPMS, and that taking Tecfidera was very bad for me, and that I should stop it immediately. Two highly skilled Neuro's with totally opposite diagnoses! I happily went back to my other Dr. fully believing in his treatment. With Tecfidera, I have had no new issues, except for occasional "extreme brain fog." The "MS specialist", was wrong in her diagnosis, since so far I have had no further progression, which is why my Neuro had put me on it to begin with. My symptoms are minor as compared to what most of you are having to deal with. You are all in my prayers!

[Amore55]

Chevy_Mama I cannot tell you how sorry I am for you. I will be praying you find relief. Keep us posted as you can see how much we all love you. Kelly

[greaterexp]

Chevy_mama , I'm sorry you've had so much to deal with recently. So much upheaval in your family and unwelcome news from your doctor on top of difficult symptoms all must be a lot to handle. Our faith changes our outlook on those things, thank God. MS is such a strange disease, too, so what may seem permanent can change. We are praying for God's comfort and help and healing.

[Chevy_mama in reply to greaterexp]

Thx so much greaterexp

[Sukie427]

Chevy_mama , so sorry you got such harsh news. There is nothing else to say but to keep on keeping on. I am sending you good vibes from the healing vortices of Sedona (LOL). Seriously, try to do something fun for yourself--go have a spa day and get pampered. You deserve it.