MACKAY1
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February 8, 2018 at 4:44 pm
I feel like it’s my life you were writing about. Same time frame except I was 36 at the time. I felt great until a year ago. My ankles started getting weaker and foot numbness went extreme. I started falling all the time. Long story short I now have to use a walker all the time. My neuropathy had all but disappeared and is back now in my big toe. Gabapentin to the rescue! I have been to a number of neurologists because I have bouts of vertigo. No answers from any of them. They enrolled me in vestibular pt with no good results. What do you feel the pregablin and escitalopram do to help you? So good to read your story.
June 14, 2016 at 9:36 amI also have severe restless leg syndrome. Let us just say Requip and I are long time friends. I also have back pain and leg residuals from my bout with GBS 18 years ago. I have needed two back surgeries. I now get pain injections in my back from pain management. The pain is in my upper thigh mostly. For anyone out there who might know or have what I do, can you tell me what discs you have injected ? Such as L 1 and 2 etc? Let me just add a gripe. I have heard on this site many who say , “it is not related to your GBS bout” it was to long ago. I was glad to read on here one day the soliloquy from GBS no matter how long ago , will worsen with age. I find as I age this is a major faction in my life. Just wanted to put that out there and get some opinions.
June 14, 2016 at 8:36 amI know this is an old post but I have exactly the identical problem. Did you ever find a solution ?
August 4, 2015 at 8:45 amLet me add a yes, yes, yes to your post. I am 18 years out. Same severity as you it seems. What is frustrating , is many neurologists have told me, it isn’t the GBS, it’s the residuals of it. To me that’s like saying, the chicken or the egg.As I get older the symptoms vary, the intensity especially. When I get over fatigued I now itch unbelievably, having to take Neurontin, which gives me some crazy dreams. My restless legs have made me go on yet another medication called Ropinerole, which knocks me out for an hour, but upon awakening the restless sensation is gone. It is no wonder these medications make me sleepy since they are used to quell the nerve endings. I wish you the best of luck, and know you are not alone.
July 31, 2015 at 7:33 amHi Dlockard
All you can do is quietly explain that you cannot do some of the things you used to do, and it is very frustrating for you. Obviously they can see by the cane that it is an effort to stay balanced. I am always afraid people will think I have a drinking problem. Word of mouth to other friends can help. If people haven’t walked in your shoes they cannot feel what it is like , and often make false statements.July 9, 2015 at 10:15 amSometimes it is incredulous to know other people have the same exact symptoms of ones self. I have just viewed these posts (some from long ago) and can connect with every single feeling of despair from lack of answers. From the severe restless leg syndrome (which is by far my biggest complaint) to the toe pain of different toes, to all the other abnormalities. Ropinerole I am told by various specialists, is the only drug known to help. I do yoga, swim, and have years of physical therapy. My lack of balance has caused numerous bad falls. I will try the magnalife pill that dissolves and hope ! The anti-depressants sometimes given together with other meds did zilch. Any other ideas ?
GBS 1996,paralysis,ventilator, months in hospital and rehabJune 30, 2015 at 1:28 pmSince I had initially written my first post on temp. control , I have had a blood panel on every single deficiency it could be to make me so warm always. All tests came back normal. I even tried Estrovan thinking perhaps it was hormonal. As I had previously stated my hypothalamus was “fried” after (3) 107 degree fevers,while in a coma with GBS. This e mail site is the only thing after repeated doctor visits, that can make you feel you are not crazy, or a hypochondriac, or the only one in the world who wears shorts in the winter !
May 22, 2015 at 12:47 pmYes, my restless leg syndrome, and balance have gotten worse. I am 18 years out
May 22, 2015 at 12:45 pmReading your link and others I am greatly relieved to find others with the heat problem Should we all move to Alaska ! Guess not since it even happens in the cold.
May 22, 2015 at 12:36 pmMiles74, I finally found someone else with the metallic taste ! Could never find out why. Doctors do all the blood panels and they all come back well, no deficiencies. Did you ever get results of why from anyone ?
May 22, 2015 at 12:17 pmDear member,you sound like me. Do they ever say oh it couldn’t be the GBS, it was to long ago ? (18 years) I get the sweats so badly out of the blue. When I was in my coma , I had a fever of 107, three times. I feel like my hypothalamus was ruined. Doctors don’t know how to test it.
May 22, 2015 at 12:03 pmI have thigh pain and horrible restless leg syndrome. I have an appt.(which took months to get) for her to try and find something to put me on.I have had balance therapy for a year and I try( notice I said try yoga !) I get back injections with nerve blocks every 6 weeks- and nothing. This doctor is my last avenue. Neurontin helps helps with the nerve endings give me the biting bee syndrome, and ropinerole for the restless legs. I feel like I’m loaded with drugs, and the doctor said it’s pills or pain. Anyone else ?
May 22, 2015 at 11:55 amDo not think you are crazy. I keep showing my husband these spots over and over, all on the arms. I even tried to cover with hand makeup!Makes me feel like an old lady with age spots !
November 21, 2014 at 11:22 amwow, it’s like I wrote this question- no replys yet? In fact I see my neurologist with the same question next month, and promise to to
August 31, 2014 at 12:13 pmGH, thank you for the kind sentiments
