northernguitarguy
Your Replies
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July 14, 2010 at 7:28 am
[QUOTE]Is it Dr. Vera Bril that you will be seeing? Are you now getting IVIG?
Laurel[/QUOTE]Admitted June 9th. Above said testing done next couple of days and IVIG from 11th-14th. I have to look up the spec. name but he’s a guy.
[QUOTE] I am really curious as to whether or not you still have double vision? How long ago was your first symptom and what was it? [/QUOTE]
[QUOTE]I would love to hear your progress sinceI think that you and I started our illness with the root of Miller-Fisher. [/QUOTE]
Started with tingling in my feet folowed by leg weakness. Next fingers.hands started to tingle, waist asa well then double vision. Wheelchair/walker by 10 days after first symptoms.
Since leaving hospital walking and balance have improved. Torso, forearms and hands remain weak, numb and tingly but hands have shown improvment. Vision still hampers ability to read.
Wont say I have MF, I think self/amateur diagnosis is foolish. Hopefully new neuologist can answer some questions. I do expect and forseee a full recovery.
Good luck with your condition. Sounds rough, makes mine seem like Disney World (although I find amusement parks to be nightmarish anyway)July 13, 2010 at 7:09 pm[QUOTE]Have you had extentive testing? i.e. lumbar puncture, mri, EMG, Nerve conduction studies, bloodwork for autoimmune disorders, heavy metal testing, vitamin deficiencies, blood sugar levels, thyroid levels etc.[/QUOTE]
Yes, all of the above and more. Did 12 days in the hospital, IVIG for 4 of those. Examined and treated by neurologist. He is not a specialist in GBS but apparently there is one in Toronto. Getting a referral from GP tomorrow.
Improving at a snail’s pace, but improving nonetheless. Frustrated by sensitivity in hands, my wife’s soft skin feels like it has stubble on it. Potato chips feel like sharp broken glass. Playing guitar is nearly impossible. Looking for a miracle cure, though I understand there probably is none.
July 13, 2010 at 5:17 pmHi Laurel
I have been diagnosed GBS by a neurologist. I was down within a week and a half. Do not think it is MS. A former patient says to look into Miller-Fisher cause I have double-vision as well. Hopefully seeing a GBS specialist in Toronto soon.
July 13, 2010 at 7:19 amRight now with the whole balance issue my theme is ‘I Feel The Earth Move Under My Feet’.
My hands are numb, weak and stiff. I have a band of stiffness around my waist. The only painkiller | am using is advil.
I’ve heard about nerve creams and Gabapentrin. Little else, looking for input.
July 12, 2010 at 8:28 amSex has been an odd one for me. My lower body was hit far less than my upper and I had no paralysis you know where. Normally, I am a pretty frisky guy, a bit much for my wife at times (which I have through discussions with friends come to accept as normal).
For the first time in my life I am wishing away my sexuality. Pass the salt-peter please.July 12, 2010 at 8:12 amI’m having a string of days where I feel worse actually. Though my walking has improved, my hands, arms and torso all feel as painful as ever…..though I can hold a glass better…….it’s not enough
I did get good news from work, they recommend that I stay off until December to recover…..gives me a bit of freedom from that stress….regardless, I would still rather go back to work in Sept.
July 12, 2010 at 7:06 amHi Susan
Welcome to the forum. Cant say the same about GBS.
My symptoms are identical to yours. I have been this way about a month. For me the improvements are slight but are there. It’s like feeling only 114 yrs old instead of 115.
Like Harry said it is good to talk to someone with GBS. This org. can send a liason to see you (possibly) or you could setup a phone call with many good people on the site. Feel free to message me and we can talk. I’m north of Toronto and usually home and would love to chat. Take care
July 11, 2010 at 8:09 amDecided to sell off our Tom Petty tickets yesterday. Going to a concert seems impossible. The good news is that we didn’t lose any money as there are lots of tickets left. However, I love concerts and Petty in particular.
Hands still feel like they were sanded down, weak and incapable of so many things. They were certainly the worst hit along with my midriff.
July 11, 2010 at 8:03 amEnjoyed the company of friends and a cold premium beer yesterday. Also slept until 6AM which has been rare, usually awake at 4. Little things can mean a lot.
July 10, 2010 at 7:36 pmGo get ’em. A week on the beach will be a tonic.
July 10, 2010 at 7:54 amsick of:
-being dependant for almost everything
-fatigue
-being unable to play guitar
-tiring physio that doesn’t show results
-tv
-pain in my elbow joints
-being aroused and not able to do anything about it
-palms that feel like they were dragged on gravel
-frustration
-can’t driveJuly 7, 2010 at 3:08 pmI thought of a new one today. Responding politely to “Are you feeling any better” I said “Yep. Instead of physically feeling like 111 yrs. old, I now feel 110.” We both laughed and agreed it was better than nothing.
July 7, 2010 at 6:16 amHey James
This is a great story! Your speedy recovery is inspiring. 😎
July 7, 2010 at 6:12 amhey drummer, are you a drummer??:cool:
July 6, 2010 at 5:12 pm[QUOTE=hopalong]I have been fighting this dreaded disease for 10 yrs and if one more person comes up and asks me if I have tried this or that I will scream!!! My favorite is the person who said if I were you I would not take this sitting down ( I was in a wheelchair) I told her really?? Cause I am just loving this!!!
My other favorite is ” but you look soo good” So what am I suppose to look like **** to prove I am sick??
Most days I can take it and laugh and other days I just want to give people the finger…. I have found it best to stay home!!
Keep up the fight!![/QUOTE]
I too am tired of suggestions at times. Today it’s my dad thinking that an oxygen tent would help. I said that I’d rather set up an opium den.
Yesterday, Lisa and I ventured to a nearby town for sushi to try to beat the heat. By the time I got home I felt like I’d been shovelling gravel all day (more likely Gravol with this nausea). It was a tough trip and I haven’t done squat today, but getting out and living life will have to be a factor in my recovery.
I hope that you all have something to smile about or laugh at today:D 😎
