Good morning

Hello everyone. It is my first visit to this forum. I was diagnosed with primary progressive MS nearly 6 years ago but was told I had had it for at least 20 years before I was diagnosed. I have suffered with Restless leg syndrome since my early 20's now 60, so I have been a member of the RLS forum. I have been told that both MS and RLS go hand in hand. Does anyone else out there have both. I take a cocktail every day of pramipexole, OxyContin, pregablin and cocodamols and my doc has just referred me to see a counciler as I am getting depressed and all of a sudden the feelings of wanting to die are a little overwhelming. I have always been active, mountaineering, canoeing, pot holing, skiing, you name it , I have had a go. Now 60 and 2 grand children, frustrated as I can't run after them. I know my problem is accepting my condition but from doing what I did to now latch hooking, it's taking its toll. Sorry for going on, thank you for being here. Cheers Jimeka

9 Replies

  • Hi jimeka welcome to our little group that's growing by the day. I hope you can find the support here like l did. And do. They thought l had rls that's what started me on the road to my MS dx. I see a counselor also and on anxiety and depression meds have been for yrs tho. Hang in there and watch your beautiful grand babies grow. There is,nothing like a grandparents love! I spoil mine then send them home. Hahaha

  • Thank you for replying. I cannot take any meds for depression due to the RLS, they make it worse. My grandsons are living with us at the moment, another 6 months as their parents are making their bungalow into a house. I hope you have had a good day so far. Again thanks, Jimeka

  • jimeka Bless your heart you have a house full. Have you asked your neorolgost about something for the RLS ? I know that it affects your sleep which affects attitude and so on.. Baclofin might help. I tried to take it tho and had an allergic reaction to it, so lm praying it doesn't come back.

    Hope you had a good day yesterday and a better one today :)

  • Dear Jimeka, while reading your post I felt as if I was reading about myself. I am 58 and have 4 grandchildren that I cannot run and play with. But, I have found other ways of enjoying times with them. We play games, cards, bingo, and coloring together. I have 4 autoimmune illnesses, one of course being MS. I have suffered with severe RLS majority of my life and I am also on pramipexole. I am on a myriad of meds for many conditions besides the meds for the MS, Lupus and Antiphospholipid Syndrome (blood clotting disorder). I was in a wheelchair due to the MS for a few years and met an awesome MS specialist who started with solumedrol IV therapy, then went to Cytoxin and Avonex. Took me out of the chair, but I developed blood clots in my lower Aorta so he stopped the treatments. It was before we found out I had the clotting disorder. In the past 2 months I had a bad flare of both the MS and Lupus, ended up in the hospital and then a nursing home/rehab for physical and occupational therapy. I am starting Rebif tomorrow and hoping it will work for me. I go from wheelchair to walker now, depending on how I feel. This last flare affected my right side which WAS my good side. I also, was very ctive and I loved my profession which I can no longer due to all my illnesses. I was a Hotel/Motel General Manager. I have aprrox 18 different meds including pain meds. I get very depressed. On July 10th I nearly died from Septic Shock due to my autoimmune only fighting my body and not fighting germs that make their way into my body. I spent 4 days in ICU then a few days in another room and then back to the nursing/rehab. I know exactly how you feel I am currently looking into trying things to work with to keep me busy, tried crocheting, painting, and now beading, when the hands will cooperate. Hang in there, I have been so depressed and the DR increased my anti-depressants twice already, but staying around for my Granchildren and my family is of top priority. If you would like to chat and share how youare doing, one on one..please message me. Sincerely, Darlene

  • Hi Jimeka, one of the first things my very first neurologist did was put me on an antidepressant. I thank him daily. Some would think that after 20 years of doing this I would be used to losing bits of myself, but I still have to go through the grieving process whenever I notice new losses. Some days MS wins, but for the most part, I don't let it be in charge.

    And yes, I have RLS as well as Fibromyalgia because MS alone would be far to boring.

  • Oops, forgot to mention, I take Zoloft for my depression and Mirapex for the RLS.

  • Thank you for replying, I cannot take any meds because of the RLS, it is unbearable. The pramipexole keeps it under control, makes life easier to bear. Thank you again Jimeka

  • I also have fibromyalgia and was recently denied any rx for pain. Miserable some days. Another disease I have is ankylosing spondylitis which can make mornings very difficult. Sympathy and prayers for you.

  • Have either of you tried any supplements, vitamins, minerals? You may find relief with those if you can't take rx medication. I know of some that have been effective with MS people I have in my life. You can find them at my website