Forum Replies Created

  • micki

    Member
    August 17, 2020 at 7:40 am in reply to: Cooling Vests

    Thanks, Ed – I saw that MS Society did that.   And , I am going to check with Medicare.   Actually, not out of my price range but, if I’m going to invest I want it to be comfortable to wear.   Don’t want to invest that kind of $$ and then have sit in a closet somewhere.

     

    I hope you are doing all you can to be safe.   Micki

  • micki

    Member
    July 6, 2020 at 10:04 am in reply to: No Longer Seeking Diagnosis

    Good for you – sometimes benign watchfulness is the best.    I’m glad you are at peace.

  • micki

    Member
    April 7, 2020 at 11:33 am in reply to: Finding My Way Through Sickness and Sadness with SPMS

    Just read your post and listening to update on the condition of your PM.

    My hub and I live in NC in the US.   At the end of Feb he broke his hip – doing well now but, obviously, we had a head start on the “staying home”.   I’m lucky that we are old enough not to have to worry about work but, is hitting all in the US very hard.

    I have been diagnosed with SPMS for the last 3 to 4 years and, suddenly, this week had a whole new issue.   I’ve been blessed with comparably minor impact in my life.    Got out of bed a few days ago and almost fell down.   Thank goodness for my poster bed.   Even a cane couldn’t give me stability.   WHAT!!!   This is a new thing.   I don’t want a NEW thing thank you very much.   Doc says I need an MRI – yeah,  like that’s going to happen.   Not going near that place right now and she agreed.    I asked, if when that happens and there are new things going on am I back to RRMS???    Could be – the lady said.   Crumb I’m 75 – I don’t handle change like I use to.

    Anyway, John, staying inside really is the best – get yourself a mask and lots of sanitizer and be well.

  • micki

    Member
    February 13, 2020 at 6:14 pm in reply to: Insomnia

    What a great idea.   Had not thought about mixing with milk, cocoa or whatever.   Thank you, John, so much.   And, what’s keeping me awake is the decision to move, finding agent, getting this house ready to sell — well you get it.    Thanks,   Micki

  • micki

    Member
    October 26, 2019 at 9:31 am in reply to: Do doctors tell you "it’s all in your head?"

    Does “when a woman your age presents with “unexplained pain and sensations” I usually advise “talking to someone”    count?         That was the ortho I went to first because I didn’t understand the pain.     I was kind and said “I don’t have a problem with that if necessary but do you think it could possibly be nerve related and maybe you could suggest a neurologist?”      He sighed and said it was a waste of time but OK.

    My neuro was so kind and sent a “very professional but not so nice letter” to the ortho.    GRIN

  • micki

    Member
    June 19, 2019 at 6:47 pm in reply to: Need advice about CBD oil

    I would not buy on the internet.    I would go to a CBD pharmacy and get professional advice.    Its all legal –

  • micki

    Member
    June 19, 2019 at 6:45 pm in reply to: Need advice about CBD oil

    Hi Stef, I started using CBD oil in October.    I’ve noticed that the numbness and tingle that I felt about half way up my calves have abated.     Some days it does come back but on an average I feel better.    I’m also sleeping better and do not have those “knee jerk” nerve reflexes.

    And, I have bone on bone issues with my knee and that pain has been reduced.

    Personally, I feel better and do believe it helps.   My doctor knows I’m using it – they have no problem.  Your choice.  My suggestion ?- give it a try and give it a couple of months.     It happens slowly and, in my case, I suddenly realized that good things were happening.     Good luck.

     

     

  • micki

    Member
    May 5, 2019 at 5:49 pm in reply to: Sometimes you just have to laugh

    Amazon

  • micki

    Member
    May 5, 2019 at 5:05 pm in reply to: Sometimes you just have to laugh

    Ed, have you tried Theraworx.     It does seem to help.    Micki

  • Ed, so glad you are getting some relief using CBD.      Until you said something I had not paid attention to the fact that I’ve not had knee jerks in the middle of the night for quite awhile.    Hmmm

    I do like sleeping.

  • micki

    Member
    March 18, 2019 at 7:40 am in reply to: Do you take any Vitamin B supplements?

    I have been taking biotin for about 6 months.   Not sure I’ve noticed a difference but, this question got me to thinking and I did some research.   I’m wondering if I’m taking enough.   Question I will be asking my trusted doctor’s nurse today.

    Having said that – one of the things its suppose to assist is energy.   I don’t know about anyone else but, this winter has been a beast.  I live in NC and we’ve had cloudy, rainy, weepy, cold days for weeks now.   Today is suppose to be sunny but really cold.   Hoping this is the last of it.   We had a couple of days last week where we were able to open the doors and it was wonderful.    I guess my point is – maybe this question should be asked in a month or so down the road.   Everyone I talk to, MS or no, has really been in a funk.    Hoping good old natural Vit D coming from the sky instead of a pill will help.

  • micki

    Member
    January 20, 2019 at 2:08 pm in reply to: Do you know what a pseudo exacerbation is?

    Looking forward to this column.   Wondering if my lack of energy is MS or winter malaise.   BLEH.

     

  • micki

    Member
    December 31, 2018 at 4:35 pm in reply to: Does anyone have migraines that are attributed to MS?

    Debi, I mentioned my migraines to my doctor at Wake Forest and she was wonderful.   Threw me back into the MRI machine (my favorite place) and scanned my neck.     Found out that the migraines were being caused by a narrowing in my neck putting pressure on a nerve.   Sent me to a local neuro who, after looking at my scans and checking me out, suggested I try yoga to reduce the stress in my neck.   Also had a PT who gave some tricks on how to sit at computer, sewing machine and behind steering wheel to also reduce stress.   Helped so much and I seldom get headaches anymore.

    So, glad my doctor didn’t immediately go off on treating the symptom (headache) and went looking for the real cause.   I really get frustrated when a doc immediately goes the MS route without looking elsewhere first.    Now, as to meds – in all the years I’ve dealt with headache pain I’ve never found anything that works better than Excedrin Migraine.   You have to be very careful with it though – if taken too often it can actually cause headaches.   So read instructions and do your research.

    I know there are new things out there that can be used.   But, make absolutely sure, that you don’t have another issue before.    Good luck.

     

  • micki

    Member
    November 17, 2018 at 7:12 pm in reply to: How do you survive a bad MS day?

    I know that you are asking for answers but, right now, I need the answers.   When I have a bad MS day I take a shower and climb back into jams.   I veg on the couch, watch the news, work on the computer, even play games (and that is the issue) or knit.

    I’ve reached the point where unless I figure out dinner in the AM I’m stuck in the evening.   My husband is older than I.   He is recovering from surgery and I am so sorry about that.   I’ve done everything I can do to take care of him.  But, today because of a real energy draining yesterday I’ve not been so good.   Washed clothes, took the dog to the vet and then I was done.

    I was told that I’m doing a bad job of taking care of him.  He is a good guy – I’ve been diagnosed since 1983 and have done really well until recently.    Things are ramping up.   I don’t know how to get through to him.    I give him articles to read – he goes to doc and he gets “she’s doing really well”.    So, how to I get doc to explain what the hell is going on and how to I get him to understand when I’m not doing everything a “wife should do” that he needs to understand.   Anyone having a problem with families that don’t get it?

  • micki

    Member
    November 6, 2018 at 11:31 am in reply to: Have you ever experienced heart palpitations, were they MS related

    Debi, I can say that I was put on a med and, of course, I can’t remember the name – DANG MS BRAIN for energy.   It over stimulated me and I actually had panic attacks.    Realized what was going on and threw them away.    It might have been nuvigil but not sure.   Panic attacks and chest pressure.

  • micki

    Member
    November 6, 2018 at 7:37 am in reply to: How many years have you had MS and what is your health status now?

    35 years – relapsing.   I’ve done well and was able to work full time and then spend many years RVing around the country.   Having your bed with you at all times makes life much easier when traveling with MS.

    Beginning to have more frequent relapses as I age.   The problem is that the aging process and MS relapses can be much alike and takes careful analysis as to the cause.   MS or simply getting OLD.    GRIN

     

     

  • micki

    Member
    November 6, 2018 at 7:26 am in reply to: Have you ever experienced heart palpitations, were they MS related

    I have and never considered they would be MS related – and docs never said a word.   Interesting – seeing doc this month and I’ll add to my list of questions.

  • micki

    Member
    November 6, 2018 at 7:23 am in reply to: Need advice about CBD oil

    I have been using CBD oil for about 3 weeks.   I purchased at a natural pharmacy.   The staff was very knowledgeable in the area of using for autoimmune diseases and we talked for quite awhile.   He explained the different strengths and dosages.   He said that I could take up to 10mg twice a day but, emphasized that I start with 5.   I am using Green Mountain.   

    I’ve stayed on the 5 mg dosage and have seen some changes.   The numbness in my legs have decreased significantly, there have been a couple of days where I’ve felt that I could actually do a little multitasking and my energy level has been up.   It seems to get better with continued usage.   I’ve also found I am sleeping better.   Whether this has to do with increased activity during the day or the CBD – not really sure but don’t really care.

    My suggestion would be to talk to someone and, I’m glad to share the name of my pharmacy, who is knowledgeable, caring and just not interested in selling the product.  I’ve also used the topical when my back is giving me problems and have found relief.   It is absolutely worth pursuing in my opinion.

  • micki

    Member
    June 19, 2019 at 9:48 pm in reply to: Need advice about CBD oil

    Linda – I use an online pharmacy in Asheville, NC. It’s naturesvitaminsandherbs.com

     

    Good luck, Micki

  • micki

    Member
    June 19, 2019 at 6:56 pm in reply to: Need advice about CBD oil

    Linda, where do you live – you may, very well, have some great shops near you.    Don’t be afraid to go in and talk.   I understand there is a stigma with marijuana and our age group.    This is totally different.  Promise.

     

  • micki

    Member
    June 19, 2019 at 6:54 pm in reply to: Need advice about CBD oil

    Linda,   my reply said “waiting for moderation”.   I’m hoping it goes through.    I love that you said that you are “old” and tired of all this.     Me too my friend.     Let me know if you got my email.

    And, I’ve decided I love my gray hair – doors get held for me, folks let me go first in line, I get help with my luggage on a plane, I get discounts without being asked my age.    Yep, gray hair is the BEST!!!.    I hope you are having a good day TODAY