getting diagnosed @51 & 20+yrs of pain and suffering

Hello y'all, Im new here. Im married for 27yrs and have raised 7kids. Im newly diagnosed, actually a 1/3 of the way through it. Been experiencing symptoms since I was in my teens looking back, but extreme symptoms from age 30.

Im glad to finally know whats wrong, but Im also terrified... so Im looking to meet others who have it and are going through it.

26 Replies

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  • Hi Marianne365 you have certainly found the right chat room, there are many of us, wish I didn't have to say that, so welcome, someone on here. will always be able to answer any questions you may have or just have a chat, laugh, cry,, whatever you feel like, have a good day, blessings Jimeka

  • thank you! Im feeling pretty freaked out and thought it would be awesome to be able to talk with others about what they go through and what Im going through. THANK YOU JIMEKA for reaching out to me, its a bright light for me today!! :-) I have to go to work at the moment, I run my own company. Its hard work but thank God I can work from my bed if I need to cuz I often do. When I get a chance I hope to chat with you more. but again, its wonderful to meet you, thank you again for your reply and I really look forward to chatting!!! I hope your morning is blessed!

  • Thank you but dont try and do everything at once, pace yourself. Fancy has done a list of 'things' that can happen with ms, it is worth the read, blessings Jimeka

  • Welcome KariAnne365. The MS diagnosis process can be pretty extensive and frightening. When I finally got diagnosed, I thanked my doctor. Nine years of 'yes it is' and 'no it isn't' was far worse for me. If nothing else, a definite diagnosis allows you to start learning what you need to know and how best to treat or attack it.

    It sounds as though you've had MS for a long time. I'm sorry. But it sounds as though you have accomplished a lot (like raising kids!) despite it. Remind yourself of that each time the fear slips in

    Visit here often and voice your fears. Ask questions. We've all been where you are. Wishing you peace of heart and mind. 💕

  • TuTu thank you for your encouragement. I definitely need it right now. My symptoms; specifically major instant spacing in muscles along my spine after literally under 5min just trying to clean up my kitchen.

    I am experiencing cramps in other places as well, but the one in my left foot is like a charlie horse constantly about to fully contract... And muscle fatigue is making it hard to hold y head up at times as well as stiffness in yet other places. Right now my right elbow, knee and heal are stiff and painful but not like arthritis while Ive got extreme spacing in other places.

    And I hate complaining. just hate it; especially after being sick for 20+ yrs. Ive fought hard to get my Fibro under control. Then had both hips replaced and a hysterectomy all in one year. At that time, prior to getting medical care I had 70% of symptoms. Now after doing all these things, 3 yrs later Ive got 100% of both common and uncommon symptoms.

    I had a hard time finding a dr that would even see me without a full diagnosis... reminded me of back 17yrs ago when I was trying to find a dr to see me for Fibro... But I did, and this dr is amazing and I feel super blessed to have an appointment with her next month.

    Ive been hanging in there all these years, but this past few months have gotten so hard to function I can hardly work or deal with anything....

    Im so relieved to be making some friends with people I can relate too. Thank you al for welcoming me!

  • You have a lot going on, KariAnne365. I hope your doctor is able to come up with a symptom management plan that can get your pain under control. Praying you get relief from the pain soon.

  • I do too TuTu. I go on the 17th. This is a link to the dr Im going to, there is a quick video. nisatx.com/meet-our-doctors... After watching it my relief level was huge.... this brings back horrible memories of going to dr after dr to find one who could help me back in 2000. I ended up going then because my thigh muscles in both legs locked up like giant charlie horses after dancing for under 10 min. I was dropped to the floor by the pain, I had to be carried out to car and ended up not being able to stand for literally weeks. It was like my legs were we noodles. At that time I also had a pain that I can only describe as a vice grip on my spine which lasted about a year. Since then Ive had attacks all over my body, but lately the constant spasms in my back and legs are keeping me from doing anything. Between that and my crohns like symptoms, Im really miserable everyday, but I still have to work.. l am blessed to work for myself, but my job requires me driving a lot, theres no one else to do it at the moment. Yesterday I barely got through it and had to come home and go to bed, but couldn’t get to sleep… blablabla lol

    When I called the MSAA to get help finding a dr I found there are only 4 within a 60mi radius who specialize in MS. None of them wanted to make an apt for me. Finally ended up in tears and the scheduler said hold on and after a long time she came back on and said “ok, the dr will see you” and made my appointment. Ive got to pay for it, but Im ok with that. Im hoping I can make payments on the MRI I need. They said they wanted me to come to the appointment with one, but the one I have is over 3yrs old and only of my brain. So Im going to have my current Neurologist order me one for my neck/spine. His specialty is sleep disorders and nerve pain, so he hasn’t taken me very seriously in the 3yrs Ive been going there. I do sleep a little better and the violent nerve pain I had when I started going there is now a lot better, but despite that and having both hips replaced my MS symptoms are now worse than ever and there are so many.

    Im not as intimidated by the disease itself as I am trying to find and go to a new doctor as that has always been a horrible experience in the past. Ive got a lot of depression at the moment because of this… I was thinking after all Ive been through and done to “get better” Id be better… Thank God I have an amazing husband who always is there for me, but I HATE THIS for him, we’re supposed to be enjoying having our kids all grown and working toward semi retirement.

    More blablabla :-/ so like I said, finding people going through similar things is a major blessing. Ive been looking for the past couple weeks for a support group like this one. When I found out I had Fibro 16yrs ago the support groups were filled with people who had given up and it just got me super upset. But y’all are so positive and encouraging Im feeling so blessed to meet y’all!!!

  • KariAnne365, I'm 58, a few years older than you, but totally understand how MS may affect your empty-nest plans and upcoming retirement years. Like you, I feel more sadness for my husband and how this affects his (our) dream of doing things together.

    But then I'm reminded of many here just starting their lives: single, newly married or with young kids. Others are strapped financially or have heartbreaking home situations. I wouldn't want to swap lives with anyone. And somehow, that makes me more thankful for what I do have...as well as more compassionate toward those who suffer through more than I do

    That all said, I still feel the sting of unmet dreams. And I still feel regret over my husband and me not living our golden years as we had planned. But at least we are living them together. We'll adjust our plans. Dream new dreams. And hopefully not look in the year-view mirror too often.

    I don't suffer pain as you do, but I know others here do. I'm sure they can share more on that.

    I will view your website after I send this. I'm happy you found a doctor, but don't understand why the struggle? Were the others not accepting new patients?

    As for MRIs, check with your new neurologist before having your current doctor order them. Your 3yo MRI may be enough. Your new doctor may want to order new ones anyway. No need to pay twice if you don't have to!

    We're here for you, @KariAnne365. I'll be keeping you in heart and prayer. 💕Dawn

  • Dawn, thank you so much. Your words are so true and I hadn't though of it like that. I very much love looking to the positive and you had several thoughts that will keep me there!

    As for the drs not seeing me, they all said they dont take either newly diagnosed or undiagnosed patients. After speaking to all of them, starting with the closest first, I found Dr Garza in San Antonio, an hour and a half away. But I'll take it! And her scheduler was very hesitant, but after a long time on hold she came back and made an appointment.

    Im so glad for your advise about waiting for the MRI. The scheduler said I needed to bring my MRI and records with me to the visit, but Im overwhelmed about the records part. Ive got the one MRI on a disc, and will get what my current neurologist has, as well as my notes on my symptoms; which Im making as simple as possible. But other than that no doctor has ever been willing to even discuss it with me because I had so many issues to eliminate.

    When I see dr Garza Im going to just tell her why I only have a 3yr old MRI. That MRI showed what my neurologist said was "just a small white spot" on my brain nothing to worry about. But I think most of it is in my neck and spine and Ive not had an MRI on it.

    I will just focusing on the joy I feel knowing I did get in to see this dr, and that she is just the right dr, at least her video gave me that feeling, and that it will work out ok. I have great spiritual faith and Im depending on it!!

  • Dr. Garza sounds like an answer to prayer KariAnne365. I hope you find her to be compassionate and willing to listen. According to the website, she sounds well-versed on MS.

    Try not to stress yourself out over the records collection, but try to get as much as you can together so Dr. Garza has as much as possible when she first meets you. I have a feeling your first meeting will be more of a meeting and subsequenttest scheduling. (My neuro is a 2 hour drive and she's worth it!!)

    Make a list (not too wordy) with date and symptom. You can leave that with her. If she has the time, she can scan it at your first meeting.

    A positive outlook helps. But we all get down and allow our fears to get the best of us sometimes.Like you, I don't know where I'd be without the love of the Lord, my husband, and dear friends. I hope you come to count us all among your close friends. We're here for you! 💕

  • I already feel like y'all are not just close friends, but very kindred spirits; meant to be in my life. Y'all are so wise! My heart is filled with joy!

  • Hi hope all is good for you I have been dealing with MS since 2007 like you and all of us we were dealing with it before we knew it was M.S.

  • Thank you so much for you reply. Im really grateful to meet all of you! It sounds like you can relate and that is a relief!

  • Karianne365, hello and welcome to this amazing MS chat room from Fancy1959. UFO the safe place to ask questions voice concerns and to find out information about MS. Our chat room is full of caring, kind, and compassionate people who are extremely positive and very supportive.

    First and foremost don't be terrified anymore. Reach up and grab it by the hands and will pull you along this winding pothole filled path that MS leads us down. We will not let you get lost and we will not let you take any detours if we need we'll keep hold of your hand as long as it gives you comfort.

    I am so sorry you are in such pain for so long. All I can say is that the advances they have made in MS, the new therapies that are out there you're yearly, and the diagnostic tools that have become available in the last few years have really changed the face of MS. Also understand have many disorders that effect the nervous system can imitate each other. Therefore sometimes it is hard to figure out exactly what is causing your neurological symptoms and pain.

    As soon as you finish your diagnosis talk to your about what therapy he or she would recommend for your symptoms. Express your pain levels and tell them you need something that can help with that if possible. Express your other symptoms as well. I would suggest you write them on a piece of paper along with any and all questions you have and take them into your visit with your neurologist. It will help you to keep from forgetting what you want to ask and get answers about. If your neurologist brushes off your concerns or doesn't have time to go through the entire list with you, especially being newly diagnosed, think about looking for another neurologist. There are lots of good ones out there and you've got to have one that you can work well with and he will work with you in return. It makes a huge difference in your overall care.

    That's all I can think of at this time. If you come up with more questions you know where to find us. And don't hesitate to do so. I'm glad you reached out to us because I believe there is much we can learn from each other. Take care of yourself until we talk again. And I want you to remember one thing from this conversation and that is that we are stronger together!

  • Thank you Fancy1959 for your reply; so full of information and encouragement! Its such a blessing and it means so much to me!! Its definitely a blessing from God!!

  • KariAnne365 i understand completely! I am 70, but now told I have had since 17 and all my terrible pain misdiagnosed was MS. But as my daughter (who has suffered with Crohn's disease for 23 years), you have managed all this time with MS, and pain, and just because it now has a name, you are no different and life will be the same. I had MS last year and was told it was fibromyalgia causing me to fall, stiff muscles, tremors, sharp chest pains, migraines - but didn't know it was MS. Now I know. I refuse to be threatened. But I will take anti progression med for the increasing lesions they found and for that I thank God!!

  • Thank you agapepilgrim, I hate that y'all have it too... This is the first time Ive ever spoke to other people with MS. Its a relief to me to have found people who are positive and encouraging!

  • KariAnne365 welcome. This is a Great! Place to share questions and concerns.

    I am 58, diagnosed at 50. First symptoms at @ 30. I think that's not an unusual MS timeline???

    Happy New Year🎉

  • Thank you for your reply!! And Im finding it seems like there are way more people who had the symptoms for along time pre diagnosis than who dont. Thats really sad. It shouldn't be that way. I was reading that for a long time it was thought that MS didnt cause pain. Im like what? I cant even understand that because there is nothing about this that isnt painful; physically and mentally.

    And Happy New year to you too!! 🎉

  • I'm sure you'll find this chat room a godsend for support and information.

    I'm sorry you're having so many symptoms. Our lists are so long sometimes!

    I pray we can all find ways of coping well with all we deal with.

  • Thank you for your reply. I think this is a Godsend place too. I told my husband how awesome y'all are! Im a pray warrior, and Im sure praying about this, now I will be praying for all of you as well!

  • Bless you! For so many of us, prayer sustains us, strengthens us, and comforts us like nothing else can. We can never pray too much!

  • greaterexp I am a believer in prayer. I could not have survived the physical pain I have suffered since 4 years old (now 70, diagnosed on 6/6/16), and the emotional confusion that does with it, they eye strain since temp blindness when 17, the falls in past 15 years blamed on fibromyalgia, the mental confusion of last 10 years blamed on bi-polar - without the power of prayer and Jesus bringing the peace that passes this world's understanding. And believing this world is not my final home. The answers I find here are so much more satisfying that those found in any doctor's office!

  • I am sorry you have this disease but I do know that you will get loads of info and support here.

  • Thank you for your reply Lindance. It does seem like I will get a lot of support and info here. much needed.

  • Hey KariAnne365,

    I'm sorry you have MS, but I'm so glad you found a Dr who will listen to you and give you the help you need. This is a great group of people and you'll find them very kind, helpful and you'll even have a laugh and a smile (and more) to help you through the day.

    Hang in there and always remember-you are better than MS and can get through those days when you don't feel like you can.

    Jennie62

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