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VERY DEPRESSED!! READY TO GIVE UP!!

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    VERY DEPRESSED!! READY TO GIVE UP!!

    After years of tests and Drs. I finally was DX'd with Benign MS in 09. Then in Dec 09 I was told I had RRMS while in the hosp. But my neuro does not like the DMD's so he refused to start them. By spring 2011 my symptoms were worse so he suggested I start Gilenya, Sept 2011 was started on med. I was doing well on the med still having symptoms and problems but doing better without any new relapses (only pseudos).

    Then out of the blue he ordered a spinal tap and said beforehand that he was thinking of stopping DMD as he had read about side effects. Tap came back neg so he said "that meant I did not have nor could I have ever had MS!!!!" He barely spoke to me or looked me in the face!!! I felt like he was calling me a liar!!! He stopped the DMD cold turkey!

    2 weeks later I developed a severe case of shingles. ( my daughter and husband thinks it was due to the sever stress of his treatment of me) I tried to call him several time's about the shingles for help and treatment. But he never returned my calls. He said he would see me in 3 mo to see how I was doing off of the DMD ( he said I would feel better).

    My daughter went with me, he looked at my shingles (from across the room)and said that it was the worse case he had ever seen. He said they had nothing to do with stopping the DMD or MS. He argued with us about the results of the tap. He said maybe I should go see the original Dr. that gave me my DX's!!??!! My daughter and I were speechless with shock! Then we both told him at the same time that he was the one who DX'd me!!!

    Boy did he start to back paddle! He says are you sure? Yes we were both there( My daughter is a is an excellent nurse). He then stated that "uhh well" I do have have Benign MS but should not take DMD's. Then said I could get a second opinion. Problem is, he was the only Dr in Ft Worth
    area who treated MS. (My Dr at that time said this Neuro was an MS specialist he knew and was really good.) Now this Dr tells me he does not know anything about MS!!!!!!!!

    Now I'm out in the cold, depressed still suffering with shingles pain and itching after almost 7mo.
    and ready to give up completely... I really cant find a reason to do this anymore! I'm tired, broken and fed up. All I want to do is sleep! I have to force myself to look after my sick 77 yr old husband and dogs. I've stopped doing crafts, cleaning or going anywhere.




    Anyone contemplating suicide, even if only for an instant, or anytime in the future, should call the National Suicide Prevention Lifeline 1-800-273-8255 Professionals that can help are available 24/7. PLEASE call! It's free and 100% confidential
    Sissy

    #2
    Hi Sissy,

    Don't give up (((Hugs))).

    It's not you, it's the Dr. you have. Please consider looking for a different Neurologist, one who knows what they are doing.

    Benign MS is only benign until it isn't. There is no way your Neurologist can predict how your MS will or won't progress. This disease seems to throw a curve ball when you least expect it.

    Regardless of what type of MS you may have you have the right to be on a DMD, if you so choose. The recommendation is to start a DMD asap.

    Having a negative LP does not rule out MS. There are those who have been diagnosed with MS and had negative LP or didn't have a LP. Of those who had a LP 85% were positive for o-bands.

    Have you been to your Primary Care Physician about the treatment of your Shingles? If not please do so.

    Take care, Sissy
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      Hey Sissy,
      Don't give up yet, OK? Shingles is horrible-and it sounds like you have a pretty awful neuro. Please call your primary care doctor for help with the shingles, and even help with another neuro. You deserve much better care then you've been getting.
      hugz
      "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
      Verin Mathwin, The Wheel of Time by Robert Jordan

      Comment


        #4
        hold on tight!

        sissy, fire your doctor!!!!
        that's the worst ive heard about a dr. incredible!

        maybe your DD, didn't you say was a nurse?, could check around for another dr.

        i used to drive almost an hr. to see my neuro. he was worth it! the quack nearer to me had said it was all in my head! yet, less than 3 mos. later a tumor that other neuros had been watching tripled in size!!! it's hard to believe that it did so, so quickly. i think he just didn't bother looking at my MRIs very well.
        my new neuro got me into one of the leading neurosurgeons in the state of KY. he did an excellent job! that 2007, and i'm doing pretty well

        it's amazing the difference a good neuro can make in your health and attitude!

        giving up is a problem i struggle with often. i can't blame you for wanting to call it quits i know there have been times that i wanted to do it too.
        but i haven't , because it'd hurt my daughters, grandbaby & husband plus close friends.

        i have a friend whose mom killed herself when she was a teen, she's in her 40's and it still bothers her. she still struggles with losing her mom that way.

        don't let the MonSter win!! fight back with better drs. and medical care. i'm sure your DH and DD will miss you greatly.

        hang in there and let us know how you're doing.
        does your insurance cover seeing a counselor? i've seen one and she's helped a lot with my MS and dealing with it and life in general. i'm on SSDI, and sessions are affordable.

        praying that you find help and relief from your symptoms!

        take care and God bless you!
        "All things are possible for those who believe." Jesus

        Comment


          #5
          I was at my pain Dr the day I broke out. I showed them the first few spots above my waist and stated that ddueto the pain I was in I was wondering if I had shingles...they agree and gave me meds for it. I went to my pcp true next week and they repeated it with a stronger dose. I ended up with it going from mid midrif arrea to my spine, waist to breast. It was very bad every one who saw it was amazed how bad! :-(

          My so called neuro wants me to go to UTSW MS Medical Center in Dallas. It's abt 100 miles away. My daughter would have to take off work and pay for us to go and stay abt 3 days.she would be willing, but it would be a real hardship. Plus we would have to leave our perspective families.

          We can't find a MS Dr. around here. I can't even get myself to fill out all the paperwork. I keep falling asleep and loose my train of thought. It's like writing this message, I keep fighting to stay awake. It's miserable! ! I hate it!!

          I have very good insurance so medical part would not be a problem. I know I'm being a whiner abt this. I'm really sorry my friends. But I fought through stage 4 cancer (melanoma ) 2 times and had 2 major back surgeries at the same time. I was given 2 yrs to live. That was in 1988...I SURVIVED.

          BUT NOW I'm a diabetic on insulin and MS! How much more can I ask of my family! My DD is taking care of my granddaughter and G-Grandson. And poohb3ar my g-daughter is in remission from brain cancer also. Now its her blood that is causing problems. She is 28 with a 8 yr old son (husband left her for a 16 yr old! ) livingwith her mom (my daughter) .
          Sissy

          Comment


            #6
            so glad that you are pulling through! Make sure you get the best metabolictrained Dr. that you can for your diabetes. I have been living with diabetes for 44 years and MS for 15 years. I have my ops and downs, I know that you can do it!
            hunterd/HuntOP/Dave
            volunteer
            MS World
            hunterd@msworld.org
            PPMS DX 2001

            "ADAPT AND OVERCOME" - MY COUSIN

            Comment


              #7
              Those shingles must be torture! I can't stand itching. I don't know what kind of doctor treats them. A good PCP or allergist. I would imagine a burst of prednisone would clear them up, at least for a little while.

              You don't have time for depression. Get on a plane or train or boat and get the medical care you need. That doctor is no MS specialist. There are many people who have MS with a negative spinal tap, myself included.

              I don't agree that we need to see an MS specialist. The integrity and quality of doctor is the most important. Most neuros should have the ability to treat MS. Fort Worth is a good sized city. There should be a decent human being somewhere in the city.

              You shouldn't put up with that kind of doctor for a minute. I will give him a kick in the butt for you.

              Comment


                #8
                I'm sorry I take so long to reply! My PC is driving me crazy! Half the time goes bonkers before I can reply...BUT I did have 2 deep tissue prednizone/lidocane/etc. injections under anesthetic by my pain Dr. :-) The first one lasted a whole week :-( I went back and had another one and they said they hit me with every thing they had and I only had a very mild change. I can have another but it's just to hard to get a driver/caregiver.

                It's been at least 6mo. and doing some better. My husband rubs topical cortisone on it 2 times a day. The Lidocane patches help a tiny bit with the itching. But it still stings and feels like I have adhesion s tearing loose. It doesn't help that in the front I have scars from gallbladder surgery
                ( over 40yrs ago when they actually opened you up and mine had ruptured...so...) then 10yrs ago I had baseball size lymphoma's removed from both sides of my rib cage. Plus in the back I have scaring from 2 major back surgeries in '87 and a grapefruit size lymphoma removed off my spine 10 yrs ago.

                My husband says I look like I was sewn back together by "Dr. Frankenstein"! (Its Halloween LOL). He say's it in joking. I do have my shares of battle scare's I guess, a 20in. scare from by 2nd cancer surgery and a lg hole in my thigh ( baby food jar size LOL) from the the 1st cancer surgery. 5 surgeries on my hands and 1 on my foot. Wooo...Halloween and Horror movie people would have a field day with my body!
                Sissy

                Comment


                  #9
                  Benign MS?

                  Why have I never heard of "benign MS". Sounds a little like a "Peaceful War"...

                  I'd be skeptical of any doctor who suggests that MS of any type is benign. Like some one else said, "It's benign, until it isn't."

                  If it were me, I would be looking for a different neuro!
                  Jim S.

                  Comment


                    #10
                    Originally posted by jstinnett View Post
                    Why have I never heard of "benign MS". Sounds a little like a "Peaceful War"...

                    I'd be skeptical of any doctor who suggests that MS of any type is benign. Like some one else said, "It's benign, until it isn't."

                    If it were me, I would be looking for a different neuro!
                    I thought of the benign type of MS as the type of MS one would have if they never had relapses. I thought that was the type I had. When I began to have some serious cognitive problems (a feeling of disconnection and speaking English as if I was just learning the language) my Neurologist said I may have the Benign type. It is not benign at all! It means that the disease is still progressing but in the grey matter not the white?...and the disability is cognitive and does not become physically disabling. I did some research and there actually is a Benign type!

                    Comment


                      #11
                      Wonderdog Lady I would love to see your research! I'm going to see a new neuro on Dec 22 in Weatherford. So please everyone keep your fingers crossed! I had a really bad Thanksgiving holiday. I was unable stay awake or keep my thoughts together. I have felt disconnected and had terrible nightmares (and day mares). My husband said he kept waking me from screaming and talking in my sleep. It went on for days!!

                      My daughter sent over a complete dinner that her dad finished cooking! (he never cooks) I have been so depressed!! I have not put up any Xmas deco's and don't want to do anything, no money or energy to shop. This stupid PC is a mess so its hard to use. The stupid shingles area still hurts and itches. My IBS-D has been insane. No control of my bladder! I feel like this new Nuro is my last hope and I don't hold out any hope for that.
                      Sissy

                      Comment


                        #12
                        're your symptoms

                        Your symptoms sound similar to mine with the exception of nightmares in the daytime. A friend of ours came to visit for three days. I have known her for Thirty years but I could not think of anything to say to her. I sat in complete silence. I did not recognize this disconnection and nightmares where I was always paralyzed, as a relapse. My Neurologist was upset because I let it go on a week. That appointment was the first time I had are the term Benign MS. Apparently when you experience this type of relapse it does not automatically mean that you have benign MS. It is determined and diagnosed over time. Just like other types of MS. I am glad you are going to see your Neurologist. I don't know how long you have experienced these symptoms but it sure sounds like a relapse. Please let us know how you are doing. Wishing you peace and good wishes.

                        Lynn

                        Comment


                          #13
                          Benign type

                          Look up benign ms . I ha v e been diagnosed for 8 years; have had no MRI progression and very little in the way of mobility problems...so low eds score. However I have been symptomatic since day one with fatigue, cognitive problems and weakness off and on on my right side. My Neurologist is leaning toward benign MS course. I hope this info helps.

                          Comment


                            #14
                            What is a "benign MS course"?
                            Sissy

                            Comment


                              #15
                              jstinnett, I'm confused too! And very depressed!! My family is worried because I love Christmas and normally "DECK THE HALLS" as they say, but this year can barley take care of my own needs! How can I bake cookies for my 2 Great-Grandkids! I can't hardly get off o the couch long enough to go to the bathroom...

                              and I need a driver to go to the Dr.
                              Sissy

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