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  • hleslie
    I'm so it may be long and not the best..
                               SYMPTOMS I have had and or experianced
    I have had Major swelling in my hands feet and legs
    (Edema) on a diaretic as of 7/7
    I have had on and off diareha/constipation   Bloating  severe issue with the bladder Constantly going or pressure to go (like now).
    nasty headhaches   MAJOR, MAJOR fatique on going for a few years
    I have had MAJOR weakness
    I have on and off been tripping over myself, and dropping things Really bad in the past week 7/1-7/7  and a few times in the past
    I had one day on July 5th, a severe headache and a really bad pain in my left eye when I moved it.
    in past had 2 times my eyes went spastic and then  I had severe blurred/double vision has subsided  still blurred not as bad
    My legs, knees, hips, arms,  shoulders neck and spine HURT so bad it feels like i have worked out for 24 hours straight.
    (On going for a few years), some days are worse.
    I have a constant ringing in my ears ( on going a cple of yrs.) always this pressure feeling in left
    I have a constant ache and like a current that runs up and down my body non stop.
    numbness and tingly throughout, pins and needle, and or a  burning, spasams random areas ( on going a cple of yrs)
    my tremors have been on the down low, I have not been active to much do to the swelling in my feet
    JUST A NOTE: These symptoms well almost all of them come and go or it's new.
    (it is not a constant issue.. or it has happened at some point in past few years. )
    Pain  Fatigue  Walking (Gait) Difficulties Numbness or Tingling  Spasticity
    Weakness  Vision Problems  Dizziness and Vertigo  Bladder Problems
    Bowel and Bladder problems  Pain  Cognitive Changes  Emotional Changes
    Speech Problems  Swallowing Problems  Tremor  Breathing Problems  Sleep Apnea
    Itching  Headache  Depression  Swelling  bloating  nodules and cyst  Hashimoto
    little blisters on hands and toes
  • tremainemichelle
    I'm sorry this is your reality. 
    I experience the fatigue. The pain the numbness the blurry vision. At time my vision goes black. I have started getting headaches more constantly only on my left side. All my pain and numbness is on my right side. I can not feel the right said of my face. 
    If your able to try taking walks or any type of exercise it helps me so much I do yoga and try my hardest to eat good. Talk to your doctor. About the pain and discomfort they can get you on some meds that can help it. I haven't found anything to help with the nerve pain yet but my major flare up don't happen anymore. Your not alone. I feel your pain. I send my love and hope the best for you. 
    -Tremaine <3
  • hleslie
    Hi tremainemichelle,
    Thank you for your reply, I do try and excercise whn I can, and Itake Gabapatin and Motrin 600
    for the pain, I have the numbness pretty much every where for 90% of the time. My movement disorder specialist has put me on primidone for the tremors and they are at  bay for the time being as long as I don't over exert or get  stressed out. I look back and try to figure out when I started to notice all these symptoms started. I use to live in Florida and I was born and raiised in CA.. I was Always sick there growing up. I used to get these massive dizzy spells every now and then to where I had blacked out or passed out, once when I was in 4th grade I passed out and broke my always seemed to happen if i was hot. I even lived in MI and it happened there as well several years later.. any way I'm rambling so if you ever need to talk fell free and God bless you as well. TY :)
  • gjlisGLORIA
    What a nice post, tremainemichelle. Thankyou. I have twice taken a pill for the nerve pain which I have only really suffered twice in the past. I shall try to find my pill bottle with the name and get back to you. It works almost instantly. carbamazepine (tegretol)
    Stay as positive as it seems you are. 
  • levo12
    Holly -

    I don't have an answer to all of your symptoms, but I do have Hashimoto's disease and this might be of interest 

    I have Hashimoto's disease (hereinafter HD) in addition to MS.  I don't know whether HD can be separated from hypothyroidism.  In my understanding HD is simply a cause of hypothyroidism and itself does not have a specific treatment.  If you treat hypothyroidism you treat HD.

    For me,  HD would make me incredibly cold - even in warm weather.  I would always need to wear a sweater.  No matter what the weather HD would also make me very lethargic.  At its worst point I could sit for hours and hardly twitch a muscle.  There were other problems: my fingernails and toenails were tissue thin and brittle, my hair was dry, brittle and unruly (I always looked like I had a Moe Fein*/Three Stooges hairdo - it would not go any other way) and I got callouses all over my elbows, hands and feet.  

    I've been taking levothyroxin for years now and those complaints have gone away.  

    *When I posted this message in my mind I was picturing Larry Fine, but obviously I was channeling the wrong Stooge.  (And I could not spell the surname, either.)  So sorry, Moe!  You were always the Stooge with sleek hair.

  • hleslie
    Hello Levo12,
    Thank you for your response, I have been on Levothyroxine since 2005, I have my tsh tested 3,4 time a year.. I hear you about the brittle hair and etc, I started using this Suave Sleek, shampoo and conditioner for frizzy and it has been Great for the dryness. I live in AZ. so as far as cold goes we don;t get to experiance that to much. LOL.. I have NEVER experianced such sweating as I did last year..I am not sure why it was so bad.. But this year it has been so HOT that I really dont go out to much, it causes my trmors to go into effect..I wished all my issues would go away but unfornetly another shows up// Ugh!! well any who Than you for replying and I hope you stay well and keep in touch..
  • levo12
    Holly - Thanks for your post!  

    Argghhh....   MS and ambient temps!  AZ must be no picnic in the summer!  (Though I probably would like the lizzards.)

    I had always heard MSers do not tolerate heat too well.  I never had any problems until  a relapse early this year.  As soon as the outdoor temps started to reach the 60s one side of my head and upper torso have felt like they are baking under a heat lamp.  I have never heard of anything like that before!  It is just so strange. I want to bring this up with my neuro next visit and see if he says anything.

    Just before I landed in the hospital and found out I have MS my spine hurt awfully bad.  I thought I had pulled a muscle by moving some heavy tools around in my basement.  So I did a really dumb thing and applied a super strength Ben-Gay type of muscle rub on my spine and back.  If you have MS never, never, never, never, NEVER use super strength muscle rub on your spine.  Even after washing it off in the shower it took days for the Hiroshima intensity flash-burn sensation to calm down.

    It seems that MS activity can change the temperature sensations on your skin.  I recall that for a time after that I could not tell hot from cold water on my hands..   

  • hleslie
    Haha! I know how it goes. The heat is un bareble for a few moths so I stay inside as much as possible. I go to the store early.. I'm thinking of moving back to MI, but the cold is so horrible on me as well. I need to find a place that the temps stay at at least eighty all year. LOL... I wish.
    I have been suffering Mas​ive Spinal pain for about a Year now. there are days it hurts so bad it puts me in tears. I tell the doctors about it. But as you may know it is like talking to the wall..
    Curious, Do you have issues with taste or smell? I have issues with it there are days I can;t taste anything nor smell as well.. I apologize for the mishaps on the typping, my fingers are stiff and I'm TIRED...
     Talk to U soon.. Have a nice Nite..
  • anywhereoutofthisworld
    levo12, I understand the temperature issue, one example I can think of is an ex boyfriend of mine applied massage lotion to my entire back as he often would and forgot this one time to warm up the lotion between his palms before he applied it and I almost died, got it felt like ice cold (it wasn't actually that cold as he explained) but I screamed loud as it hit my back.
  • maria1
    Is your sleep apnea being treated? Are you on probiotics? you may want to try the exercises I posted under: spasms, leg pain and exercise. They worked well for me.
  • hleslie
    Hello Maria1,
     Yes I was diagnosed in 20​04, I have been on Bi-pap and for 2 years c-pap, I never had an issue up until 1999, i was on my way home from work one day and all the sudden I found my-self falling to sleep at the light. then it was happening at work, and it just progressed from there. I appreciate that I will look into them. I will try anythiing,and suggestion. No I have not tried probiotics.. I will ask my Dr about that, TY...
  • levo12
    Holly -

    I got your note about taste and smell.  Yes, I have had periods (a long period in particular) where I had a much muted sense of taste and smell.

    I had a notable loss of taste and smell in the early 2000s.  I am certain I had MS at the time, though I had not been diagnosed.

    I lost my sense of taste and smell right after (or concurrent with) having pneumonia.  I really do not recall taste/smell issues while I had pneumonia (I probably was distracted by not breathing well).  However, several weeks later when I went back to work I was surprised I could not taste the Coca Cola I was drinking at lunch.  I thought my lunch place was just watering down the sodas.  Then I started to notice I could not taste much of my solid food either.  For a long time I had to have globs of Heinz ketchup on everything as that was the only thing that registered to me as "taste".

    I always thought of the taste/smell issue as being related to pneumonia or the antibiotic I had to take.  (I can't remember...  was it Bactrim?  It was the same med they were giving to the people exposed to anthrax around that time.)   Anyway, the taste/smell issue cleared up by itself but it took a year.  It may have been an MS issue, but I never thought of it that way.

    I also sort of lost my sense of taste and smell when I was in the hospital for MS.  I think that had much more to do with feeling like a prisoner there or having huge MS stomach issues than actually really loosing my sense of taste or smell.  Do not misunderstand. The hospital did not treat me poorly.  The therapists and nurses were great.  (I really didn't spend that kind of time with the doctors.)  I just didn't want to be in the hospital and certainly not for such a long time.

    Now if you want to talk about the food service people... well, that is another story.   :  P 
  • hleslie
    Intresting, I also had pneumonia in 2006. in 2005 I had blood clots in the back of Both knees and that is when I was dx's with my thyroid. I  had diverticulitis in 2011 i had 13" of my colon removed in the Hospital for 18 days from that. then in 2012 i had a full hysterectomy which the DR.purforated my bowel it was to be in and out the following day Bu,t I eneded up on my death bed.  (Literally ). I was in a coma for 3 weeks. Respitory failure, and in the Hospital for a month, they had tubed me several times that I thought that was the reason for this issue.
    Every since this happened I have not been the same, I mentioned to  my Rheum. Dr ( I had read that Ms can be caused from Trauma to the system, I asked if this was true He replied Most diffanetly. So I attributed alot of this happining to me because of this.
    .My Dad's Mom died from MS when he was a teenager, I know they say it has not been determined to be any history of hereditary BUT!
    I have So many health Issues that my sisters and brothers Do Not Have, Nor anyone in my family.. I as well as My 2 older sisters have Fibromyalgia, that is the Only thing that we share the same, So I PREY that I can get some answers very very soon.  So as far the taste I have to eat something that is very spicy or have a strong flavor. to notice.. UGH! it is frusterating.. My Primary DR. said she is going to try and get me into the Mayo clinic now to HOPEFULLY get a DX. 
  • levo12
    Thanks for your note regarding the Suave shampoo.  I could not find the Suave "Sleek" that you mentioned, but they did have something by Suave called "Smoothing Shampoo".  It was a whopping 97c for a bottle so I decided to give it a try.  I don't have the severe dryness issues like I used to, but still can use a conditioner once in a while.  

    Did you ever hear of a hair conditioner product called "Kolesterol"or maybe "Kholestrol"?  It came in a metal foil tube (like toothpaste).  It worked really well for the dryness issue, but it has been ages since I've seen it in stores.  I think it was sold in the 70s - 90s.   
  • hleslie
    Good Morning Levo12
    You are welcome. No I have not heard of th​at product, Have you checked like Sally's beauty stores? I hope the smoothing will help you. I have also heard that Coconut Milk helps.
    I hope you are well have a grreat day.
  • levo12
    Hi, Holly!!

    Thanks for your fast reply  : )

    I have not been to a Sally's in this part of the country, but now I have a good reason to look for one.  I will check on the net to see if one is nearby.  Just by casually looking in strip malls as I travel around Sally's stores seem to be nearly everywhere.  I am positive I'll find one.

  • levo12
    Hi, Holly!

    I tried my Suave Smoothing shampoo this morning and thought it was great!  I am just guessing, but don't think I want to use it every day because I'd probably just get over-keratinized.  I would end up with a gloopy blob of super-conditioned hair on my head as it is not nearly as dry as it used to be.

    If you are interested in my opinion I think the shampoo worked well.  It has been 12+ hours hours and my head/hair still feels really clean and still smells good in spite of near 100F outside temperature today.  The best part is I was able to comb my wet, just washed hair without the usual snags and tangles.   

    I found there is a Sally's in a strip mall 15 or so miles from home.  When I get to that area I will look for the other Suave shampoo (Sleek) you mentioned and give it a try. 

    Thanks for your input! 

    Oh!  You mentioned "Coconut Milk".  Is that the actual name of a hair care product or the liquid that comes from real coconuts?  (Searching for my tropical drink glass and the paper umbrellas... just in case.)
  • SharonC2014
    I'm sorry you're in pain.
    I have had Major swelling in my hands feet and legs
    I have had on and off diareha/constipation  
    My bladder problems are leakage and wetting myself if I try and hold it (especially bad in the car)
    I have weakness, off and on, very random.
    I trip over everything! dropping things few times a week
    I had blurred/double vision yesterday morning until I was at work a couple of hours (fun fun!) This very rarely happens.
    My hips, arms,  shoulders neck and spine HURT so bad, but mine may be arthritis????
    I have a constant ringing in my ears (sounds like cicadas.) 
    I have a constant ache and like a current that runs up and down my body non stop.  YES YES!!
    numbness and tingly throughout (mainly feet/hands, but I love it when my thighs go numb), pins and needle, and or a  burning, spasams random areas (usually my feet or ribs)

    FATIGUE - non-stop I think I could sleep for a month

    I hate MS.  I don't have time for it in my life.  I'm trying to take care of my mom since she's survived pancreatic cancer since 2014; that's when I got diagnosed, a month after she'd had surgery.  We're both hanging in there, but we're both so much more tired than before!!!

  • gjlisGLORIA
    As I read your post, leslie, I see that I have so many of the same symptoms. I guess that one does not realize that these kind of creep up on us or at least their graduation does until we become aware of them. My most debilitating symptom for me at present is the fatigue!  Every so often I just need to give up and stay in bed and do nothing but, after hours od delicious sleep, work on my iPad.
    Thanks, friend.
  • izzy222
    Make sure you tell your doctor everything and they will so what they can to help. it's important to take vitamin D everyday. I've heard also a gluten free diet cna help and even reverse leisons. Your body hurts because it's so weak, but if you go to the gym and start off slow you can build some muscle. This will make it harder for ms to weaken your body