Answers needed please

Hello

I thought I'm posted this last night but I didn't see it so here goes again. in the last 2 weeks I have started messing up words in a sentence . I can't seem to get words our right. this is really scaring me since I facilitate training for a living. could this be a new lesion lighting up ? I am trying to get it with my Neuro but he is booked so I call everyday hoping someone cancels. Not sure a bout of steroids will help this either. has this ever happened to anyone. is it short lived or something I just need to deal with? I was dx 12 years ago but recently started Aubagio. this is really bothering me.. thanks all.

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  • Jkdavid99 I really don't know what to say. I think since you have had MS for a few years and this is a relatively new symptom, you might be having a relapse and a bout of steroids might be what you need. Maybe if you tell your neurologist that you have worsening systems, they will fit you in (they should). Keep us informed of your situation. Good luck.

  • Don't panic about reaching and forgetting the right word ; it is unfortunately a ms issue on the spectrum of cognitive

    I have this problem too and have a few work arounds. I don't work anymore but do presentations for volunteer activities so I do know what you mean. First try to relax and give yourself a breath when the word is not there. I find that sometimes a similar word or phrase comes and I go on. I bring short phrase talking points outline for any presentation I do it's easier because it is broken down to one point at time with spaces between lines so I go back or continue when I lose my way temporarily

    I often tell people up front this may happen my MS friends get it and now that it happens my non ms friends understand and don't think anything is wrong

    I find it happens more when I am trying too hard to remember or think for a particular thing rather than letting it go and try a work around

    It's not gotten better for me but my own adaptations mostly work and I am doing ok with it though it frustrates me beyond words pardon the pun :)

    In

  • Agree with Lindy. Don't get stuck trying to find the word. Think about describing it (ex. Voodoo doll = you know one of those dolls you stick pins in~ ppl laugh, but it is harder when u r talking about professional communication with higher expectations).

    This has been worse for periods for me then seems to improve and/or I accommodate for several yrs now.. Recently word finding and other cog issues have worsened enuf that I'm leaving my job 🙁

    Whether it's new lesions, effects of stress, or secondary progression, you deserve an appt with your neuro

    Let us know how we can support you?

  • The word reaching and slowness of processing complex information is what caused me to leave working.There is a terrific MS 30minute video about these kinds of cognitive issues and I recommend it for all. Also a paperback pamphlet that supports the video 😋

  • Do you have a url link for this? Tia

  • Go to MS you Tube you can find it there or call the Society and they can give you the link:)

  • Lindy, thank you, I had seen that before but it was very worth watching again👍

  • I don't have an answer for you (sorry), but I'm wondering if your neurologist's office has a nurse or her assistant you can talk to? When I have a problem, but my appt is still a ways in the future, I usually get an immediate call back from my doctor's nurse. I've even been set up for immediate steroid infusions without even seeing her. I hope you can get past the scheduling desk and speak to someone who can pass along your concerns to your doctor. Will pray for a quick response.

  • Jkdavid99, it is MS WARRIOR welcoming to this wonderful chat room. I am so glad you brought your concern to our attention. You wil receive more advice, support, and practical ideas you can use then you will know what to do with.

    First and foremost, our advice should never supersede your neurologist's advice. Keep doing everything you can to get in to see your neurologist as quickly as possible.

    Now, to what I have dealt with. I too, have trouble with my speech. Mine does come and go so hopefully yours might too. I know what I want to say but it just comes out slightly skewed. Other times I can actually see the word i'm trying to spit out. For the life of me I can't remember how to say it. It helps me to speak slowly and concisely. The faster I speak, the more mistakes I make.

    My last question is does your workplace know you have MS? If they do I wouldn't sweat it at all. I would tell my training class about my disability and thank them for their patience when things become jumbled. I foresee your class being so impressed by how you are battling your disability that they will succeed way beyond your expectations in their training.

    Remember, together we are stronger! I would also like to invite you to become our latest MS Warrior. As an MS Warrior, we never give in and we never give up. We simply fight. Fight on MS Warrior, fight on. You will beat this speech difficulty you're having. If I find more information on my end about it I will be sure to pass it along. If you find out information please pass it back as well. Take care. We are just a post away if you need us!

  • I have dealt with this periodically for over 8 years. I've noticed it is worse when I'm stressed or fatigued. I joke about it now, as to not make myself more upset. I believe it is connected to a flare up.

  • Thank you everyone . I did get into my Neurologist today thanks to a cancellation. a couple things, he thinks my nystagmus is acting up so he is putting me on gsbapentin for that . And I will definitely try to speak slower and take notes he wants me to pay attention with my words and see if it gets worse . He does not think it's a side effect from my Aubagio so that's good. he said to stop taking Meclazine so often since that could be what is doing it. that sucks because although it doesn't really do anyhing for me I am using it as a crutch. I am also getting on vitamin D so hope that helps with something who knows. has anyone ever taken Gabapentin and how did you tolerate it? keep on keeping on .

  • I take 600mg of gabapentin 3 times a day. I don't know how I'd function without it. I use it for mainly sensory problems. It calms the spasms, vibrations, and most recently, itching. No side effects for me. I hope you tolerate it well and that it helps with you.

    Did you take the meclizine for vertigo/dizziness/nausea? I use that when needed. Gabapentin hasn't helped that. Thankfully, I haven't needed the meclizine recently.

    Happy you got in to see your neuro. Praying you notice an improvement soon.

  • I've prescribed gabapentin. Everyone responds to meds differently. Can help with neuropathy. Not sure it will improve your vertigo or speech. Be alert for worsening symptoms. Agree, meclizine because of anticholinergic side effects, could worsen cog fog and there's little research it actually helps vertigo.ancedotelly ppl say it does???

  • I take 900mg of Gabapentin 4 times a day. I take it for the nerve pain. Taking it has kept me functioning. Before I started on it, I had so much pain in my feet and hands I cried and winced with every step and kept my hands up like a freshly scrubbed surgeon. I think it makes me drowsy, but so does my other meds and this disease itself, so no harm no foul. I started with 300mg 3 times a day back in 2013 and it has creeped up to the amount I take now. Glad you got in to your doctor. Hang in there. When I have the issues with speech as you described, I stop and breath, stay calm, and try other words. I know it's frustrating. I do telephone tech support for a utility billing software company. I often have to transfer my call to a coworker and that is becoming more frequent. I just keep plugging along the best I can. Good luck to you in your MS journey!

  • Do you or anyone else in the group know is the gabapentin generally rx for Parkinson's?

  • No, it is not an antiparkinsonian drug. It might have some + effects on dopamine, and because it is a seizure med, it could help with some PArkinsons symptoms and can be used for RLS

  • per WebMD: Uses

    Gabapentin is used with other medications to prevent and control seizures. It is also used to relieve nerve pain following shingles (a painful rash due to herpes zoster infection) in adults. Gabapentin is known as an anticonvulsant or antiepileptic drug.

    OTHER USES: This section contains uses of this drug that are not listed in the approved professional labeling for the drug but that may be prescribed by your health care professional. Use this drug for a condition that is listed in this section only if it has been so prescribed by your health care professional.

    Gabapentin may also be used to treat other nerve pain conditions (such as diabetic neuropathy, peripheral neuropathy, trigeminal neuralgia) and restless legs syndrome.

  • Thank you you're better than Medline ;)

  • I am happy you were able to get these symptoms addressed:)

  • ya i know how it is as well

  • jkdavid99 I am so sorry you are having this trouble. I have the same symptom. I will be talking about going to a particular place and the wrong city name pops out of my mouth. I will intend to say stove and out pops refrigerator. I will say a friend's name, and it will be the wrong friend. The more common problem is that I just can't think of the word, and I just say "that thingamajig." This is bad if you are in the training field! I, too, am on Aubagio. Since you mentioned the problem, I do think my symptoms are getting worse. I also stutter. This began before I started Aubagio. Between 2010 and 2016, my brain lesions increased from just one to eight, so I can only imagine that as they were increasing, the stuttering started and the inability to remember the correct words and using the incorrect words all began during that time. I don't know if these symptoms have increased due to the Aubagio, or are increasing due to the increased number of brain lesions. I have been on Aubagio 3 months, diagnosed with RRMS in June, 2016, but told I have had it for over 20 years (due to other symptoms). I was told speech therapy can help this problem, but that is out of reach for me.

  • Hi agape, regarding the stuttering, mine was ridiculous during last relapse but has eased off greatly. I do find that if I get jammed on a particular sound, stopping and silently mouthing the word often enables me to say it afterwards. Might be worth a go if you haven't tried this already ?

    Angela x

  • You know Angela your response reminds me my friend with MS and same issues sees a MS speech therapist who has here read and speak out loud repeatedly to help with some of these Cog issues.

  • I'm not diagnosed yet, Lindy, so have not been allowed access to any NHS services for rehabilitation. I can't afford to pay privately, unfortunately. I personally find the cognitive issues less bothersome than the physical, as these are now substantially affecting my activities since relapse and I was always very active. I would like some help with balance and movement if I can get it, as I seem to have recovered as far as possible on my own and plateaued out again. I'm hoping physios may have special methods to help retrain the brain that I can learn from. x

  • angelite how far along are you into your dx? Lol l thought you were dx'ed already. I'm losing my mine l swear.

    Do you have a neuro yet? Keep us updated :)

  • I'm awaiting results of neck/C spine scans, Jes. I am relieved to have received a new neuro appointment for next August, a year on from the one I have just had, so at least they are keeping me on their books this time ! I was signed off twice before with first attack, told 'all in my head' after clear brain scan 2 days into illness,then 'suspected brain infection' at 5 months visit and signed off. Finally given the label of 'functional' symptoms a year on when I went back with continued balance/muscle issues etc. No further scans/tests, signed off again. Bye, bye, go live with it ! I did, for 21/2 years then got a UTI, sepsis and big clobbery relapse last Oct.Taken 4 GP visits to convince them to refer me back to neurology, due to the bias the 'functional' label seems to create. Got back to work at 6 months first time round, on reduced hours as it was a very physical job ( cleaning ). Didn't manage to get a good enough level back to continue my cleaning job this time. It's been very much a learn as you go along, self help situation for the past 4 years. Will update when I have news x

  • Aww bless your heart angelite ♡ l know from hearing from others experiences that getting a dx can be extremely frustrating. Although I truly hope you Don't have this monster! I wouldn't wish it on anyone. But l do wish you the best of luck in your testing.

  • agapepilgrim wouldn't your insurance help with speech therapy? It would be like physical therapy? I have no clue on the subject but might be something to look into.

  • Jesmcd2 it still costs $50 a visit and on tight SS budget it does not fit. That's why I can't afford physical therapy either. Neurologist wanted me to go to physical therapy twice a week -$100 a week. Plus speech therapy and emotional therapy for PBA. It's like they don't have a clue what it means for 2 people to live on $30,000 a year. They probably make that in a month!

  • I am in the same boat agapepilgrim. The copays eat up the money we need for food, electricity, and heating oil. I have just learned to pray quietly to God for guidance and a connection with people like you. My family still needs me for a shoulder to cry on and advice in this difficult world in which we live. Thank you for your honesty. It is greatly appreciated. Take care.

  • Awww Bless your heart, lm so sorry. I hate to say it, but the powers at be make everything so difficult for ppl that REALLY need the help! It's to bad that you can't go once and get all the work and do it at home on your own. I would cheat like that. :) lm so sorry that insurance stinks, and it "was" supposed to be better blah.

    You could always do what my mom had us kids do when we were little and slurring. Now remember my mom is from so called upper class" that's how she was raised lol She would have us repeat " How Now Brown Cow" and we had to do it like 20 times in a row. But it does make you move your mouth. Lol Its kinda dumb, but who knows.

    Hang in there agapepilgrim and l hope your doing well :)

  • Need to check your insurance. I received authorization and started seeing OT only to find out $2000 later, OT was not covered 🙁

  • Yep! Not an uncommon problem with MS. My brains favorite word is dishwasher! It gets substituted ALL the time! Fatigue makes it worse. Good luck and be patient. Learn to laugh!

  • StacyHayward It would be easier to laugh if those around me would laugh rather than become impatient! I try to laugh and my husband doesn't and WHAMO my anger takes over worse than I have ever known in my life. I tell him the anger is not me but it doesn't help much. I want Judi back. She was patient and peaceful.

  • Haha StacyHayward at least it's not another name yikes lolol

  • Hi i did my own research years ago and I got better 80% taking nutritional supplements to help my brain neurogenesis. I take Huperzine, phospho...serine, acethylcholine, curcumin 95, Magnesium theonato, taurine, vit D, green tea, coffee, avocado, krill oil, rhodiola. All of them and some other really help me recover my speech and words. But its take time for your brain recover, works. Continue giving good support nutrients for your brain than you will see results showing up in few months. No miracle. Take time. I was terrible, and got a lot better.

  • Hiya jkdavid99 l know all about switching words hahaha l do it in my sleep oye.

    I'm glad you got to see your neuro quickly. I was on gabapentin for a while but it never worked for me. Then they put me back on Lyrica and that didn't work either now l just take tramadol. The meclizine never helped with my vertigo. But the way my old PCP prescribed it was weird. Said to take it "when" l had them, so kind of defeated the purpose. IDK As far as the vit D goes, lm surprised that your not already on it lol, l know l feel it if lm off it a wk. Yikes!

    Back to words, I wish l had the answers. It's scary, especially when you don't see it coming. And in my case you know what you want to say, but something else comes out and you hear it, and you KNOW it's not right. If you find the answers let me know plz. Otherwise laugh it off. It's all you can do. Good luck! And keep us updated :)

  • After 30+ years of fighting the MonSter, this happens to me ALL THE TIME! For me, I just have to give myself a moment... Sometimes I just use a different word, but giving a moment really helps me! Having been a trainer myself and as a teacher before retirement, I know it's frustrating, but I'm dealing with lots of MonSter issues since turning 50 two years ago so I just relax, give myself a moment, and keep on keeping on...

  • Hi

    This is an effect of ms but there are short and long term things you can do to assist yourself with words a memory. A round of steroids as I'm sure some of our community family has suggested is a start. I also find that word searches puzzles in my down time help keep my mind sharper and help my recall words quicker at times. Meditation and breathing techniques are also a huge help because it causes me to slow down refocus and find a different word from the one I may have lost while speaking (this is also where the puzzles come in). Some of the hard ones where your searching for all words that begin with an L and there are 3 levels in each puzzle.

    I wish u well

  • Great ldea JeenaRae

  • I am totally familiar with your problem. I was diagnosed 51 years ago! The issue you describe is not unusual. I think it happens to everyone and I call it...CRS (can't remember sh-t! Even people without MS have this problem. Give yourself a break...Think about just being the best person you can be...Find a hobby that doesn't require a lot of concentration.

  • gradma289 l have to thank you for the laugh. Your CRS hit me right out of the blue and l love it. Lol I'm so going to steal that saying , although l think l heard it before l had forgotten all about it lol so thank you for reminding me :)

  • Thank you all so much. you have all been so great . I will start taking vitamin D today and Gabepentin soon. one thing I didn't mention is my mother died rim early onset Alzheimers that started at 56. I am 45 and that has me a little concerned as her a Father had it as well. ugh life is tough but can be so magical. I will just keep plugging away and will stop being so worried. Whatever happens is gonna happen . thank you all so much .

  • I hope you discussed your concerns about Alzheimer's with your neuro so he/she can either reassure, monitor, or do further diagnostics? Interestingly they have tried some of the AD meds (Aricept, namenda) for MS cog problems. Unfortunately, little benefit...

  • I have been taking Aricept for 12 years and it makes a huge difference in my life. I wouldn't dare go without it. I think it is something you have to try to see if it works for you. I know the studies say MS isn't affected by it, but mine sure is. If you're curious, discuss it with your doctors.

  • Stacy, So glad it's helping you. It's always ironic that people don't get the message to follow the medical textbooks (research). 😊 Joking of course

    I did discuss w/ my neuro. Bottom line, it's a relatively safe med with far fewer side effects than most MS meds. So if there's a chance it may help, certainly worth considering.

    Interestingly, there are reports of med students using this to help them get thru school...

  • Yeah, well that is kind of what MS is does...take its own route just to keep the researchers employed!

  • Have that every once in awhile, very frustrating keep trying the Neuro

  • Hi JKdavid99, This is purpletustin in So. CA. I'm 71 and went undiagnosed for probably 28 years. Told "it's all in your head". My much loved brother passed at 65 two weeks before being finally diagnosed with MS, but being treated for an innocuous illness. Only when he slipped into a coma did Kaiser (medical group) do an MRI. Too little too late.

    Some of the symptoms you describe I've had or have on occasion. BUT, 2 of the times when I was slurring my words and couldn't find the right word, it turned out to be TIA's or Transient Ischemic Attacks (mini strokes). They showed up on future MRI's long after they occurred. While your symptoms are more than likely related to MS, not a bad idea to run it by your Primary Care Physician.

    After having the TIA's I was pretty stable for a long time. My caveat is always a great idea to rule out symptoms that have the slightest chance of something more serious. So, while I agree with most everything our 'brethren' on the Site state, I learned my personal lesson on expecting the best outcome, but preparing a plan to rule out anything like a TIA.

    You found the right group of 'friends' on this Site. Only good things should happen to you, but, be a tiny bit paranoia and be sure you're ahead of the not so great things.

    Florence (So California)

  • Sorry about your problem and hoping all the replies have given you some help. I just wanted to add that I have been on Aubagio since January of this year as I was just diagnosed in December of 2015. I have not noticed any serious problems with the side effects that are listed with the use of Aubagio. What I wanted to share is that Aubagio is supposed to keep you from getting new lesions, and after 2 very stressful days, where I noticed I was having relapses and had gotten so stressed out I did not recognize myself, I had another MRI of the thoracic spine. I had 2 new lesions, so I called the pharmacist from Prime Therapeutics and I was told that I should get off of the Aubagio and get on a new medicine. So I guess if you are having any concerns, you might want to have an MRI to check for new lesions just in case the Aubagio is not working for you. Gabapentin is usually used for neurological pain. I have a friend who is on that because of the neuropathic pain leftover from shingles. I meet with a new neurologist tomorrow and I certainly hope he knows his MS medicines so he can get me on one that will work for me. Good Luck!

  • Blue51 so sry to hear about your new lesions. Good luck with your new neuro today. Please keep us updated with what happens today. Hopefully like you said they know their MS meds.

    Will say a prayer for you. Let the Angels watch over You :)

  • Hope all went well with your new neurologist and new treatment plan, Blue51.

  • Going tomorrow, Thursday. Got ahead of myself on the appointment day. Have my questions all ready to go. Thanks, Tutu.

  • Thanks for the update. Will pray all goes well.

  • I had similar problems starting my last year of working. I was dyslexic in my writing, I was transposing numbers. I later began slurring my speech. I did not notice it but everyone else did. A brain to mouth disconnect. When I stopped working my Dyslexic condition cleared up. Less stress maybe? I started taking LDN in 2012 and people told me my speech cleaned up. No more slurring or mumbling. Could it be related?

  • Hi howard0425 being dyslexic sucks, doesn't it? Lol And my old job was as an Inventory and Receiving Manager for a plumbing and heating wholesaler. Talk about counting.. OyeVey :) but somehow l was really good at it. It was writing words and reading sentences backwards that l had problems with. To this day l will still do it, but it now has gone to my speech. Especially when l am stressed, and/or tired. Wish mine would go away. What is LDN?

  • LDN is short for Low Dose Naltrexone. Most if not all MS drs. Know of it but not all will prescribe it. Some PCPs or GPs can also prescribe it. You can check it out on You Tube or on the Internet.

  • I have developed dyslexic typing, words and numbers, but not when writing - I think because I write slowly the slower speed helps. Thank goodness spellcheck underlines my mistakes on here and brings them to my attention so I can correct them : ) x

  • My phone goes into over drive in spell ck angelite :D personally I think the English spelling is stupid. To many letters for words sometimes if you ask me lol

  • Hello there. To be honest, I do go through short bout of speech problems. I've learned over the years how to "put up" with it. It takes effort however, you can do it. Blessings

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