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Living with Polyneuropathy CIDP, GBS, & CMT

Gbs?


#1

Ok I just joined the forum. I have been reading through lots of different memebers stories. So after reading through lots and lots of them. l am wondering about my diagnosis. The reason is because I was said to have had a "Mild GBS or one of it variants on the sensory nerves".

Ok so in a nut shell I had a sinus infection that led to an URI. This was over a coarse of about three weeks. Two weeks into the sinus infection I started to see my middle finger twitch(RT Hand). That lasted about a day(not very often). The next day it was in my index finger same hand. I was joking with my wife that I had Parkinsons(which I know is not funny). Well that lasted about a day then it switched to my other hand. On my left hand it was just my index finger that twitched(not very often). My forearms felt like they wanted to cramp also.

That all stopped then one night while I was at work both feet and hands started to feel like they were going to sleep. The next day it felt as if it was going up my arms and legs. It stopped there. But then over the next couple of days I had tingling all over body. At this point I went in to my GP thinking I hurt my back or something. This was on a Friday. By Monday I was back at work. Then I started to feel the right side of my face go numb. It was weird. It stared at the top and worked its way down over the course of a few hours. I went to our medical department here at work thinking I was having a stroke. They sent me to the ER.

Like everyone else at the ER they did all the normal test. I had of course been online myself trying to figure out what was going on with me. All test at the ER came back negative. By this point my symptoms seemed to have stopped. I suggested GSB to the doctors but they just said I would not be able to walk if that was it. Then was sent home.

I happened to have a friend I work with who his wife works at a Neurologist office. She got me in the next morning(very luck there). He did every test they can do. Not all in the same day. Went to an MRI with and without contrast. That gave me a horrible headache. The final test was a week later and was the spinnal tap.

The only thing that came back bad was my Vitamin D. So his offical diagnosis was Mild GSB or one of its variants. After reading different stories from folks on here mine was not even mild. Maybe just a touch.

New symptoms.

After the first symptoms went away both of my calves started to have small twitches in them. Which I got right online and ALS came up! After a day I started to feel the twitches all over my body, but mainly in my calves. Now it seems like lots of others the tingling comes and goes. But my legs just feel weaker. I feel tired everyday. No energy. I get pain in calves that comes and goes. Now for some folks on here who had paralysis I am so sorry. I am just sharing my story because most of the stories I am reading are about people who had horrible cases of GBS. Wanting to see if anyone else out there had a similar story as mine.


#2

Hi TNGBS!

Your symptoms sound very similar to mine but in a little different order. A couple of weeks following a Tetanus shot I started having tingling in my foot that moved up my leg with numbness then into the other leg and arms. Then my calves started twitching like crazy and my legs became so weak. I had twitches randomly in other places too but mostly in my calves. I had no energy too and I am a runner. I never experienced paralysis either so after ruling out other things they believe that I had a mild case of GBS. I too had weird facial numbness and for a couple days had difficulty chewing and a one point speaking (kind of like I had a stroke but I did not). I had a couple MRAs that showed my vessels were extremely healthy. I had a total of 6 MRIs and a spinal tap that resulted in a trip to the hospital with a migraine (which I had never had before).

I experienced some pain that also came and went. I too was concerned about the calf twitching. It eventually got less and less and my strength came back with Physical Therapy. I was told that it's good that you feel things because that means the nerves can regenerate. When did this happen to you? I'm about 8 months out but actually experiencing some of the same symptoms again but much milder following a sinus infection.


#3

I am about one month out maybe. What was wierd was that I had my nerve study done in my right leg. Then later that day is when the twitching started. Man 6 MRI's???? The one I did was horrible. I was in there for 45mins. Then got a horrible head ache afterwards. Yes I got the spinal tap headaches pretty bad for four days. I just tried to lay back in a chair. One day it got so bad I just took a sleeping pill about 1pm and slept all day.

I am already noticing that the twitches have slowed down a lot in my calves. Now though it just seems like my legs and arms hurt more. Guessing that is my body healing. I hope its not getting worse! Its been about 8 weeks since my first symptoms. I am just noticing that typing is making my arms tired. My calves feel sore. ECT. Also my ankles are sore. My Neuro wants me back for a nerve study in 6mths.

Its a scary experience for sure. For all of those who read this and had a bad case of GBS I feel horrible for you. I could not imagine. Just happy for you all that you were able to make a recovery.


#4

Had a relapse yesterday. My legs got weak. Right side of my body got numb up to my face. Feel better today. What a ride!


#5

Relapses are tough! Suffering right now after recovering from my initial attack in June 2014 due to a sinus infection a few weeks ago. Had almost completely recovered after 8 months. Running, even racing a little and working out with weights. Symptoms are not as bad but still frustrating. Yesterday was good, today not so. Still thankful it's nowhere near the problems I had initially. Yesterday, I saw my Neurologist and he believes that I suffer with very mild GBS (though doesn't feel so mild) and I am having a flare up of symptoms due to a bacterial infection. He believes that many more mild cases exist than are documented because of the difficulty with diagnosis.

I also have Benign Fasciculation Syndrome as a result of my initial attack which explains all the twitches-says they call it "benign" for a reason (annoying but nothing to worry about). Gets worse with stress and flare ups. Previous nerve conduction/EMG tests were normal along with reflexes so had ruled out other things. My Neurologist started me on supplements to repair myelin and boost immune system. Too mild a case for treatments like IVIG or Plasmapheresis. He wants me to start intermittent PT and see Integrative Medicine. Sure hope this helps!

I think I'm on a similar ride, TNGBS! Hope it settles down soon so we can move on again!


#6

Hello TNGBS,

I'm glad you had a mild case of GBS, although that can be scary as well. You said you were about 1 month out and have now light relapses. You also mentioned that your calve and ankle hurt. I was wondering, have you noticed anything during the day that may excacerbate any of you symptoms, like walking too much or something else. I would like to know, because in my case, I had probably a mild case as well; that's why initially they did not believe it was GBS because I was able to walk. I'm about 6 weeks since my acute symptoms. Last week, I felt my legs aching and heavy especially my quads. Now if I walk more than 5-10min, I feel my achiness increases. I did the NCT which came out negative. My last neurologist sort of told me I had a GBS or its some other variant and he said at this time any treatment like plasma or immunoglobulin would not matter as in the long run, the nerves will heal in most cases. My reflexes were always normal, which probably threw off the hospital neurologist. Are you doing any exercise or have you tried any alternative therapies. Just curious, as I don't find to many "mild" GBS to compare. Good luck in your recovery.


#7

Yes I get tired pretty quick. Seems like my legs hurt from just a small amount of use. I went to my son’s baseball practice yesterday. I was on my feet for two hours. As of today my symptoms didn’t flare back up but my legs feel wore out. I have wondered about giving plasma at a plasma center to force my body make new plasma. Not sure if that would work.


#8

Physical Therapy really helped in my recovery. I was lucky to get a referral to a Physical Therapist who was familiar with treatment in GBS patients. She did stretches for me and taught me some to do on my own to help break the pain cycle my body was starting to get into as it tightened up due to core weakness from my initial GBS attack. I didn't know that you could change your body's response to pain.

My workouts initially began with pool walking. It really helped strengthen my core and my legs again. Then she had me doing some easy movements and stretches with a yoga ball at home. Eventually, I was able to run again and had no pain. I highly recommend Physical Therapy like this. It helped me more than anything.

Today I had Physical Therapy again for this flare up I am going through after a sinus infection. I hope that I can stay strong during this time so that the set back is not too far. Luckily, the symptoms do seem milder than my initial attack.


#9

How are you doing? I have went through somethinghing similar. Wanted to see how you are doing amd the twitches.


#10

Well as you can see by the date that was back in 2015’. Its been almost three years since I went through my run with Guillian Barre. As for the twitching my last Neuro visit he ruled out ALS. That was about Sep. of 15’. My neuro tested for signals in my hands, arms, legs and feet. The twitching has never went away though. It comes and goes. There are times where I will get a twitch in my tricep for a week. Driving me nuts. Then it goes away. But its just random body parts that twitch.


#11

My twitching is much better but I still have a little at times. I don’t really notice it now. Very random. It’s been over 3 & 1/2 years for me. Fortunately, no more relapses and have had other illnesses with no trouble. Hope everyone has continued healing for the 2018 New Year!