Hello, My name is Rob (Hi Rob) I have had MS for over 10 years, or more. I am here to find people that are not oh poor me,but sharing people

Hello, My name is Rob (Hi Rob) I have had MS for over 10 years, or more. I am here to find people that are not oh poor me,but sharing people

So, Again. my name is Rob. I live in Chicagoland, I have MS, Type 1 diabetes and dozens of surgeries. My MS went undiagnosed for many many years and since has progressed to secondary progressive. I suffer from amazing pain, and at the moment low quality of life. Working on changing that. I am looking for people to share with, help each other, but not cry over spilled milk people. What is, is and I am no cry baby. So sorry if this comes across harsh. Not meant to be.

I am an about 10 meds. From Aubagio, Opana Er, Baclofen and about 6 more I can not spell. Diazepam. I can spell that one. All in high dosage. All add to my MS caused exhaustion. I suffer from left leg and arm numbness and weakness with foot drop. Thoracic back pain rated at a 10. With my litany of injuries and surgeries. That is saying a lot. Those are just to name a few. If you want more info, please feel free to ask. I would be so happy to talk. I have been on employers disability for 3 month, probably never going back. This makes me incredibly sad. I love what I do.

I have an absolutely amazing family and friend support structure, but as most of you can attest to. No-one truly understands. Why is the saying? something about you don't get it, until you get it.

Anyway, I am so looking forward to making connections here!

50 Replies

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  • I'm not diagnosed with anything as of now but I'm the process.

    Do you experience pain everyday? Or is it off and on? I experience electric shock down my spin (only during an attack it get) when I look down. Is that something you have?

    I was born in Naperville IL in 1980. Never been to Chicago, would like to though.

    I hope your day treats you well.

    Steph

  • Steph,

    I was actually born outside of Boston and have lived in Oswego the last 13 and Aurora before that.

    Anyway. I have pain everyday day of my life. Often weakness. I have the electrical type pain on my left side. That is nerves. Before my neck surgery, I had it in my spine up and down all the way up into my left eye. But that is mostly gone.

    If you have any questions, I am very happy to answer them.

  • Right now my Neuro doctor is treating me for migraines because of my eye pain and pressure. At this point I don't care what I'm diagnosed with....I just want answers and peace of mind.

  • Hi Steph, you mentioned pain in back when bending head down. I've similar symptoms. Looking into Lhermitte's. Do a search to read up. I just learned abt it. I'm 72 and always told "arthritis".

  • Not knowing can really be worse than any pain. Don't worry, you are not crazy. These things take time. Also, If you are unhappy with your DR. you have no loyalty. find another one. Find one that listens. My Drs for years thought I was drug seeking. Finally I went to another one. He looked at me after asking a few questions. He said. Hasn't anyone ever looked at your head? First I was offended. But every Dr was looking for a mechanical problem,when this was very clearly electrical.

  • Great to meet you, cars74.

    Your introduction has me thinking fondly of Chicago, and all of those awesome restaurants-- now I'm getting hungry.

    This is a fantastic place to meet some wonderful folks. I am sure that your stated quest will be met with success.

    Christopher

  • Hi cars74 welcome to our amazing chat, if l do say so myself! And of course l do.😊 As you can tell by some of our posts/answers. We talk about pretty much anything and everything here.

    But most of all Support each other! We are in the same boat after all..

    Please feel free to jump in at anytime! *Helpful Hint* if you put an @ in front of the name your talking to, they will be notified. IE: @ jesmcd2 ~ with no spaces~

    What happened that put you out of work? What do/did you do? I know what it's like to have to give up a job that you really like. Alot of us have been there unfortunately. Mine was because of a 2nd back surgery. Needless to say l was ticked😠 But life goes on.😊

    It's wonderful to hear that you have a great support system, l feel they are so important! Just as we feel we support each other here and it's a safe place to vent!

    Jes🌠

  • @jesmcd2

    What has put me out of work is my exhaustion, mixed with 10-12 meds that make it worse. One being an incredibly powerful narcotic. That mixed with newtons law, equal and opposite reaction. Meaning if I exert myself in any manner I pay for it the following day.

    I also suffer from 5 or so back surgeries and 12 others. I am kind of old before my time. I am hoping and praying to go back. But it doesn't look good for the home team.

  • So sorry to hear that cars74 😞 but sometimes ya gotta take one for the home team! Think of all the fun stuff you can do at home now. What kind of hobbies do you like to do? We have ALOT of very talented friends in here! And love to see a picture ☺

    But under no circumstances can you buy your wife! πŸ˜…πŸ˜…πŸ˜…πŸ˜

    Jes🌠

  • Bug* lm so going bury this iPad thing!!! You can't BUG your wife cars74

    Sry bout that ugh

    🌠

  • Hi Rob, my name is Brandi & I'm from Georgetown, Texas. I have RRMS & found out I had it in 2001. Like you said about all the meds you are taking I am taking alot too along with my monthly infusion. This is the right place to come to either talk about different situations like what could be going on, making people mad, or frustrated! Anything is ok to say here on this website that's why I have been on here for so long! It helps me alot with just random things!

  • @txcg152

    I love Texas! just too hot for me! Thanks for the encouragement!

  • Welcome cars74. We're always happy to have another perspective as we share our experiences, fears, disappointments and hopes with one another. Some here have a great sense of humor. Others, like me, who can't remember the tag line to a joke, love the laughter. I hope you come to find this a great place, and make many new friends as I have. πŸ’•Dawn

  • @Tutu

    I look forward to talking to as many of you as possible! I can't believe all the feed back!

  • I think you found the BEST place, cars74. We're all happy to have you be a part of it.

  • cars74Hi Rob, welcome. I was dx 9 years ago last Sept with MS. Prob had it since I was in my late 20's. I am on monthly Tysabri infusions and I also take Diazepam for the pain in my legs and feet. I found out it's highly addictive and when I ran out I went through DT's but didn't realize that's what was happening. I can laugh about it now but at the time it was NOT funny. I'm a good listener so anytime you want to vent or swap stories, you can with me. MS is a part of my life but it doesn't define me. People who don't walk in our shoes have no idea the challenges we face but we as MS'ers know what it takes just to get up everyday and make it through a full day. I'm still working full time but ready to retire in May when I turn 60. I want to live my life no matter what obstacles or whatever awaits me in my future I'm ready to battle. πŸ‘

  • cars74 Welcome Rob, I joined a few months ago and have found many helpful, caring, and funny people here. I am sorry for your pain and that doctors didn't listen to you about your symptoms and diagnosis took so long. There is a certain relief in finally naming it isn't there.

    I got my diagnosis fairly quickly compared to most. The GP said ms on first visit but it took neuro a year to confirm her diagnosis. I saw him twice and was told he had no idea what was causing symptoms as brain and thoracic mri were "clear", I had had a cervical mri 4 years earlier for hand numbness which was also "clear," so he suggested Lyrica for the spreading numbness and sent me back to GP. She ran every test she could think of, tried to get me into Mayo but insurance denied. I found a different neuro who listened, immediately said the cervical mri was too old, ordered another and found large lesion. I've come to realize that an mri is only as good as the person(s) who reads it. Now drive 8 hours to an ms clinic where they tell me there are lesions on the "clean" brain and thoracic mri and also on the old cervical mri. Not that it changes anything, but it's frustrating when things are missed...

  • Well said, lois52. Being reasonable requires some understanding, and yet one cannot help but be deeply frustrated by the things that get "missed" during diagnosis.

    Also, like cars74 said, we must try to understand when mistakes happen, but understanding does not (and should not) require us to stick around, watching another series of ground balls roll between our physician's legs.

  • lois52 and GasLight you also have to consider the strength of the MRI. Which T did was it? T1 , 2, or T3 ? The stronger the Tesla the more it shows.

    🌠

  • That's true, of course, and I may have misunderstood the experience to which lois52 was referring.

    I had gathered that she was describing two neurologists looking at the same MRI (of unknown strength), and that one neuro saw this MRI as clean, while a later neuro had found lesions to be clearly shown within that same, "negative" MRI.

    Either way, both points would seem to be well taken here: (i) an MRI is only as good as its technological limitations; and (ii) an MRI also may be limited by the skill and attentiveness employed by its interpreter.

  • OK l seriously forgot my point πŸ˜•πŸ˜ πŸ˜žπŸ˜…

  • I've only done that 10 times today (and it's 8:45 am now).

    Hope you have a blessed day, Jesmcd2

    Christopher

  • Squirrel!

  • Ugh πŸ˜… l got sidetracked about the bumblebee being kind the endangered species list. Oy vey.πŸ˜…πŸ˜…

  • Hi Gaslight, I read that white spots can occur in the brain as part of the natural ageing process - hence the possible misinterpretation of their meaning ? x

  • Jess, now you have just taught me something about MRIS. I know my neurologist only like to use one specific place to do them because they turned out better but I didn't quite understand why until now. Thanks for sharing. Together we're not only stronger but we're smarter too!πŸ€“πŸ€”πŸ˜Š

  • GasLight I like the analogy, or we could apply the infield fly rule...

  • cars74 , hi and welcome, as everyone else has said this is a great forum, we laugh, we cry, we joke, we give advice from personal experience, we all have ms, but we are all individuals. I have found that there is always someone willing to help, with whatever you may be going through. The best thing I like about the people on here is that they care, and understand and you don't think your crazy for asking what normal people might thing is a silly question. So enjoy, people post some amazing stuff, and we like to share activities so whatever you are into post a picture and show us all how you turn ms into a positive. Blessings Jimeka

  • Hi cars74 im chiming in late. But glad u joined us. Welcome πŸ‘‹

  • Good morning, cars74 , and welcome.

    You have such a good attitude about this 'evil' illness. I find that a positive outlook is key to dealing with all the struggles. That, and a great support system.😎

    What did you do before you had to go on disability? (I'm sorry if I missed it earlier.) Is there any way you could do something similar as a volunteer or part-time?

    I'm located in Texas, about 30 minutes north of Dallas. I've been 'retired' for the past 10+ years, and I still feel sad about it sometimes, but then there are the days when I'm glad i don't have to even make the effort. 😒

    Again, welcome!

  • I am currently on company disability from General Motors. I am a fed employee for ACDelco and GM parts. Always on the road, high pressure demanding job. Without MS it can suck the life out me. But now, The exhaustion plus the medication means absolutely no driving. I could be charged with a DUI at best and at worst hurt someone. I also suffer from ADHD and type one diabetes on the pump. So I can't even watch TV without getting side tracked. In fact, it has taken me 10 minutes to write this. Also, the slightest physical output sends me to bed for a day. So I am working with my care team to figure it all out.

  • cars74, Ouch. That's a plateful of symptoms. I'm sorry to hear all of it. I hope you and your care team are able to find some solutions for some of them.

  • Hi cars74 ! Glad to meet you.

  • cars74 Hi Ron, Welcome to the group. You'll find this is an amazing MS forum to follow. So many wonderful people that are kind and caring. Everyone here listens and offers words of wisdom, advice and shares their story in hopes of helping someone and just to let you know they truly understand what you'r going through. I'm sorry you've had to go through everything, but you now have a diagnosis and you seem to have such a kick a?? attitude. I've only recently been diagnosed and have not experienced nearly what most of everyone here has or is going through, but this group of people have opened up their ears and arms and accepted me. I noticed you live in the Chicago area, I myself live in Sycamore which is next to DeKalb Illinois. If you ever want to chat, I'm a pretty good listener. So glad you found us. Judi

  • Hello Rob, u found the right place!

  • Hi Rob! You are a fighter! I, too, have the autoimmune syndrome. After MS, they kept on coming... Type 1 Diabetes (I wear a pump now), Hashimoto's, Arthritis, Celiac, Fibromyalgia, etc. I've been on Betaseron, Copaxone 20, Rebif, Tysabri, Copaxone 20, Copaxone 40, Tecfidera, Gilenya... nothing worked. Had the worst side effects with the pills. MS is so unpredictable and planning is a challenge, but, it is great that your family is so supportive. I think that is one of the things that helps so many of us to keep fighting. I haven't been on anything since the reaction I had to Gilenya last month (threw me into a hit) and I'm starting to feel more normal. The exhaustion is the worst. I take Ritalin to help with the chronic fatigue and I have found relief from hand acupuncture and cupping for pain. It has totally improved my quality of life. All doctors are different and some don't agree with Eastern Medicine. My body rejects drugs so, I had no other choice. I hope you find something that helps you relieve the pain. GOOD LUCK!

  • Hi and welcome cars74 you have found a place where we support and encourage each other without whining. Despite all it sounds like you are going you, your attitude is great. Love it!!!

    Sorry you had to stop working, so many of us here have been through the grieving process for careers we lost. It took me in excess of a year to accept my diagnosis and lose of my job.

    Look forward to getting to know you.

  • Hello and welcome Robh74 from Fancy1959! You have just discovered a wonderful chat room that is filled with the most caring, kind, and compassionate people I have ever met. MS takes each of us down a slightly different winding path that is full of potholes and detours. With dozens and dozens of very active members you will hear ideas from actual Ms patients perspective and as they share their stories about their trek along their path including both their successes and failures along the way. By sharing our stories back and forth we both can learn much from each other.

    I too, have progressed to secondary progressive MS just this past year. I have had MS for about 20 years and it went undiagnosed until 4 years ago. As a result I too have more disability than I am pleased with. But you learn to make the best of it and do as much as you can and then a little bit more without realizing it. I'm also on large amounts of different medicines. My main therapy right now is Tysabri.

    I am not pleased to hear about your high pain levels. Make sure your doctor is aware of it. And if you're using your primary care physician it's probably time to look from a neurologist. If you're already with a neurologist bring up the pain levels because he needs to manage things better than they are. Oftentimes we are our own worst enemies. We need to remember that we do suffer from the MS fatigue syndrome with low levels of endurance. We need to make sure we don't overdo it. When you overdo it your symptoms exasperate and your pain level becomes less manageable. So try kicking up your feet and doing a bit less for a few days to see if you're playing level doesn't decrease. It's hard believe me I know butt we all have to live with our new reality, our MS reality.

    Please keep in touch and let us know what is happening to you. You are part of our extended family now and we take care of our own. If you need support we are only a post away and we are good listeners. Take care of yourself. We are glad that you have joined us in this wonderful chat room. Please remember that together we are stronger!

  • Robh74, it's Fancy back. If you're still learning about all the ins and outs of MS in a relatively new to all of its tricks and traps, you need to read a post I made about a month ago. It's titled MS and things to avoid. It goes over some stuff I'm sure you are very familiar with and already understand. But and it goes over more hidden aspects of MS that might keep you from being tripped up or hurt when it sneaks up and knocks you down. I hope it helps. And if you have trouble finding it just give me a shout back and I'll recheck how it's listed. Take care and write a post if you need anything at all.

  • Oh, I have a great team of physicians from many fields. I am well taken care of.

    Thanks

  • I'm glad you found us! I'll add my welcome to the long list.

    I was diagnosed in 9/16, but had symptoms which were pretty vague for about 20 years ago following what was probably a CIS. Now that I have had an MRI showing lesions, it was easier for me to link it all together.

    I think you'll find that folks here do vent, and from time to time our discouragement shows, but I see such an amazing ability to work toward improving whatever we can and accepting what we can't. Some of us have terrific support, and others have next to none. But here we know that others truly understand and will not judge us when we get tired, frustrated, or even a bit angry. Our family and friends can only handle so much sometimes, so I'm grateful for this chat room. I'm sure you will find it a great place for information, too.

  • Hi Rob and welcome. I was born n raised in Chicago. I left in 89 with three small children I didn't want to lose to the streets. I now live in Bowling Green KY and their all grown. I also lived in Aurora for awhile, where their father still lives.

    Will you please tell me more about your neck surgery. My neck is in such bad shape there is no position that does not hurt terribly. I was scheduling for surgery when I was diagnosed with MS 8 months ago. The surgeon told me we'd have to wait for remission and try again. I'm really scared of the surgery but I so want the pain to stop. I will see him next month and hope for some relief. Any suggestions or advice would be greatly appreciated.

    I'm glad you're here. I find much comfort here.

    Mary

  • Mary,

    They need to wait. here is why. When my first one failed. ( I opted for cadaver bone, instead of my own. Go with your own) Anyway. During my second surgery my nerves swelled, ( they did not know I had MS at that point.) when I woke up my arm was paralyzed. they had to go beck in and redo it. thinking they pinched something, etc. Well they did not. It was my MS. Long story short. I had C5/C6 fused. The pain was not as bad as what I suffer from now. But the headaches were incredible. When I woke up after they went back in, everything worked and the pain was gone!!! Second best surgery decision I have ever made. I have no issues with my neck any more at all. There is nothing to be scared of. I promise. Yes, surgeries have risks. especially on or near your spine. But as long as your surgeon is competent. You will be happy when its all over. A few weeks of a neck brace and taking it easy, a few weeks of physical therapy. boom. back to as good as new as possible.

    I hope my jumbled style of writing made some sense. Feel free to ask any more questions.

  • Thanks Rob,

    So, let me try to understand: I need him to use my own Bones? Where would they come from?

    I really hope I get good news next month and we can go forward with the surgery. I'm so ready to be rid of this pain.

  • Your pelvis. I have had lower back fusion and cervical. So bone came from my left hip area, and my neck from the right. Your Dr. may be using a different technique. But that is how my surgeries were done.

  • Just wanted to add to the welcoming on here, cars74 - from everyone at MSAA HQ!

    As I'm sure you can already see, everyone on this community is very receptive, thoughtful, honest, and (above all else, I like to think) respectful of each other.

    So glad you could join us! As our Community Ambassadors Fancy1959 & Jesmcd2 have mentioned, make sure to look around at other posts and topics that may interest you (you can even use the "Search My MSAA Community" bar near the top of this page). Then please continue to post about your experiences living with MS - we love to hear everyone's stories!

    Big fans of Chicago around here as well! MSAA has always put on a number of free educational programs in the Chicagoland area, including some happening this month.

    Always make sure to check our Calendar of Events here:

    mymsaa.org/calendar/

    - John, MSAA

  • Greetings Rob! I hope your day is alright. It's good to see you can still smile through all the adversities you face and have to go through.

  • Hi Rob

    You have such a great attitude. I do too but there are days that I have a small pity party that I don't let anyone see. Not even my husband. I am 45 years and dx 12 years ago.

    I recently started Aubagio and wanted to see what you thought of it and how it's doing for you. I would love to hear. I was on rebif for 10 years and am scared to take any medicine. Dr wants to put me on tysabri if this doesn't work for me. Yikes

    Nice to meet you and chat

  • It's a belated Hi from me : )

    I don't so much view my issues as a fight these days, rather that my disabilities and I can co exist with a little compromise and adaptation : ) Angela x

  • Have you been able to try CBD oil or any form of canibus? I have found that the CBD oil was a much better alternative than the medications I tried for my spasticity. Good luck :)

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