[tholden85]

Hi all,

My name is Tim and I am a 30 year old from Sydney, Australia. Firstly I have been reading this forum for several months now and all your information has been very helpful so thank you all. I thought I might finally post in an effort to see if anyone out there could help me find some answers.

This horrible experience started for me back in march this year. My fiance and I had decided to take 6 months off work to travel through Africa and Europe before we got married. We left Sydney for Africa and had been traveling around for only a couple of weeks on a bus tour camping, traveling on some rough roads where I started experiencing some horrible back pain in my lower thoracic spine.

I initially just put it down to the bumpy bus but it continued to get worse. This forced us to leave the bus tour early and because we had such a long trip ahead of us we decided to just stay put for a while and just relax in a beach resort in Kenya to see if it got better. After a few days relaxing my back wasn't improving and after a horrible night in pain we decided to go to the hospital. I woke up the morning we were due to go to hospital and my back was in agony with all my muscles in spasm. At this stage I still had not had any neurological symptoms. I tried to stand up on my own but was in a lot of pain. So my fiance got a couple of blokes to help me to the cab to take me to hospital. On the way to the cab my legs began feeling very weak and I asked the gentleman to put me down.

I collapsed onto the road and realised that I had lost a lot of feeling in my legs. I moved my torso only to get these two lightning bolts travel down my body to my legs. With these lightning bolts I noticed that I had lost a lot of feeling. Emma was leaning over me asking me how I was feeling when I noticed that I could not feel her touching my legs. I could still wriggle my toes and move my feet a little but was really week. My arms and chest were normal but from the waist down I was quite numb. We both thought I had a disc bulging on my spinal cord so Emma immobilized me and we waited for an ambulance. We were in quite a remote area of Kenya and it took 90 minutes or so for an ambulance to arrive where they took us to a small community hospital. A doctor performed a few basic neurological tests on me. I could partially move my legs but it was difficult and I found it difficult to feel his touch. The travel insurance people decided to fly me to Nairobi however could not get a plane till the next day.

Throughout the night my condition began to slowly improve and by the next day I had a lot of my feeling back along with some of my movement in my legs. We arrived to the hospital in Nairobi where I got an MRI of my spine which was normal. By this stage I had improved in terms of strength and feeling and had my reflexes intact. So after a couple of days in hospital I began getting on my feet again doing some hydrotherapy. I remained in Nairobi for two weeks each day getting better on my feet however had bad pins and needles and some numbness especially upon walking. My back pain at this point was still quite bad The insurance company flew me home lying flat. Once I got home I had brain and spine MRI's with contrast and seen a neurologist as all the symptoms were still present. Again they were normal. I have since had many blood tests, spinal tap, somatic sensory potential tests, two emg's/nerve conduction and a nuclear medicine scan all normal. My back pain is now gone however I have constant tingling, hypersensitivity, stinging pains and numb toes when I walk. These symptoms have now spread to my arms, hands, face and torso. I feel systemically well and have plenty of energy, my strength has also returned and have started doing some exercise bike training to try to stay strong.

The whole time in Africa, apart from the back pain I felt well, no fevers or bowel symptoms. My neurologist has done a good job yet does not have a clue. He says we have ruled out MS with the MRI, and Guiillan Barre with the spinal tap. He seems to thought if it was an infection or virus it should have cleared by now and that I should have felt ill at some point. I have just started some prendislone to see if that helps and am on 150grams of lyrica a day for pain. I have started all the usually supplements that you all suggest but the neurological symptoms continue to spread and get more intense. I have recently started waking up at night with partially numb hands if I slightly lay on them which is scary. In the last 6 weeks I have developed dry eyes and have had to use artificial tears and gels to combat this. Due to this I had a Sjogrens work up which was negative.

I have spent the last 5 months instead of being on my trip of a life time going from test to test staying with friends and as our apartment is being rented. It is quite soul destroying to not get an answer yet feel like you are getting worse. Nobody understands what has happened to me and it is so frustrating. I have started to go gluten free to see if that helps and have stopped alcohol as I have noticed that, that makes my symptoms worse. Night time is the worst as I just lay there awake with all the buzzing, vibrating, stinging wet dripping feelings all over.

Not sure if anyone can offer some advice because nothing seems to make sense to my neurologist. I am starting to think this might be small fibre neuropathy as all my tests have been normal. However it seems strange to have this come on in such an acute fashion. I have not returned to work yet as I am worried because have quite a physical job working in a hospital as a sonographer (ultrasound tech) using my hands all day long. I have been trying to stay occupied trying to ignore the symptoms but it is difficult when they are constantly there. My fiance has been wonderfully supportive but each day is a struggle.

It feels good to write this and have people read it that know what I am going through. Thanks for reading, I really appreciate it.

Tim

[KnowNothingJon]

Sorry for what brought you here Tim, but welcome.

What a traumatic experience. I wish I had something to add in terms of helping you identify your cause, though the super slueths will be about soon enough.

I'm just up and thought I'd say hello.

Jon

[glenntaj]

--you wouldn't have an isolated small-fiber neuropathy.

Small, unmyelinated fibers subsume the sensations of pain and temperature, and a number of autonomic functions, but no motor functions, and you certainly had motor symptoms (all motor nerves are myelinated).

This sounds like it could have been an acute attack of myelitis (an inflammation of the spinal cord that has numerous possible etiolgies--especially infectious, and you were in Africa at the time), or even possibly a Guillan Barre or variant episode. (The window of opportunity to find definite evidence of these is rather narrow and may have been missed.) It seems like you've gotten some motor recovery, which is consistent with these possibilites (and also with an initial attack of relapsing-remitting MS), but it is certainly true that recovery may be incomplete, and often some symptoms persist and new ones appear--and it is difficult to distinguish a Guillan Barre episode from a subacute presentation of chronic inflammatory demyelinating polyneuropathy (CIDP--often considered the "chronic" version of Guillain Barre).

You may need continued testing--nerve conduction studies, EMG, MRI's of brain /spinal cord--to see if any of the signs of these do reveal themselves in time.

[zkrp01]

Sorry for your troubles. As I read your post I wondered if the trauma from the bus ride could have bruised branching nerves. Although I would think the Lumbar would be involved rather than the Thorasic as the legs and feet were involved. I had a car accident that was relatively gentle but induced a hard shock up my right side. Three days later my journey started as symptoms started popping up. I was in poor control as a diabetic at the time of the accident. Did you have any issues before the bus trip? Good Luck, Ken in Texas.

[February]

Originally Posted by tholden85

Hi all,

My name is Tim and I am a 30 year old from Sydney, Australia. Firstly I have been reading this forum for several months now and all your information has been very helpful so thank you all. I thought I might finally post in an effort to see if anyone out there could help me find some answers.

This horrible experience started for me back in march this year. My fiance and I had decided to take 6 months off work to travel through Africa and Europe before we got married. We left Sydney for Africa and had been traveling around for only a couple of weeks on a bus tour camping, traveling on some rough roads where I started experiencing some horrible back pain in my lower thoracic spine.

I initially just put it down to the bumpy bus but it continued to get worse. This forced us to leave the bus tour early and because we had such a long trip ahead of us we decided to just stay put for a while and just relax in a beach resort in Kenya to see if it got better. After a few days relaxing my back wasn't improving and after a horrible night in pain we decided to go to the hospital. I woke up the morning we were due to go to hospital and my back was in agony with all my muscles in spasm. At this stage I still had not had any neurological symptoms. I tried to stand up on my own but was in a lot of pain. So my fiance got a couple of blokes to help me to the cab to take me to hospital. On the way to the cab my legs began feeling very weak and I asked the gentleman to put me down.

I collapsed onto the road and realised that I had lost a lot of feeling in my legs. I moved my torso only to get these two lightning bolts travel down my body to my legs. With these lightning bolts I noticed that I had lost a lot of feeling. Emma was leaning over me asking me how I was feeling when I noticed that I could not feel her touching my legs. I could still wriggle my toes and move my feet a little but was really week. My arms and chest were normal but from the waist down I was quite numb. We both thought I had a disc bulging on my spinal cord so Emma immobilized me and we waited for an ambulance. We were in quite a remote area of Kenya and it took 90 minutes or so for an ambulance to arrive where they took us to a small community hospital. A doctor performed a few basic neurological tests on me. I could partially move my legs but it was difficult and I found it difficult to feel his touch. The travel insurance people decided to fly me to Nairobi however could not get a plane till the next day.

Throughout the night my condition began to slowly improve and by the next day I had a lot of my feeling back along with some of my movement in my legs. We arrived to the hospital in Nairobi where I got an MRI of my spine which was normal. By this stage I had improved in terms of strength and feeling and had my reflexes intact. So after a couple of days in hospital I began getting on my feet again doing some hydrotherapy. I remained in Nairobi for two weeks each day getting better on my feet however had bad pins and needles and some numbness especially upon walking. My back pain at this point was still quite bad The insurance company flew me home lying flat. Once I got home I had brain and spine MRI's with contrast and seen a neurologist as all the symptoms were still present. Again they were normal. I have since had many blood tests, spinal tap, somatic sensory potential tests, two emg's/nerve conduction and a nuclear medicine scan all normal. My back pain is now gone however I have constant tingling, hypersensitivity, stinging pains and numb toes when I walk. These symptoms have now spread to my arms, hands, face and torso. I feel systemically well and have plenty of energy, my strength has also returned and have started doing some exercise bike training to try to stay strong.

The whole time in Africa, apart from the back pain I felt well, no fevers or bowel symptoms. My neurologist has done a good job yet does not have a clue. He says we have ruled out MS with the MRI, and Guiillan Barre with the spinal tap. He seems to thought if it was an infection or virus it should have cleared by now and that I should have felt ill at some point. I have just started some prendislone to see if that helps and am on 150grams of lyrica a day for pain. I have started all the usually supplements that you all suggest but the neurological symptoms continue to spread and get more intense. I have recently started waking up at night with partially numb hands if I slightly lay on them which is scary. In the last 6 weeks I have developed dry eyes and have had to use artificial tears and gels to combat this. Due to this I had a Sjogrens work up which was negative.

I have spent the last 5 months instead of being on my trip of a life time going from test to test staying with friends and as our apartment is being rented. It is quite soul destroying to not get an answer yet feel like you are getting worse. Nobody understands what has happened to me and it is so frustrating. I have started to go gluten free to see if that helps and have stopped alcohol as I have noticed that, that makes my symptoms worse. Night time is the worst as I just lay there awake with all the buzzing, vibrating, stinging wet dripping feelings all over.

Not sure if anyone can offer some advice because nothing seems to make sense to my neurologist. I am starting to think this might be small fibre neuropathy as all my tests have been normal. However it seems strange to have this come on in such an acute fashion. I have not returned to work yet as I am worried because have quite a physical job working in a hospital as a sonographer (ultrasound tech) using my hands all day long. I have been trying to stay occupied trying to ignore the symptoms but it is difficult when they are constantly there. My fiance has been wonderfully supportive but each day is a struggle.

It feels good to write this and have people read it that know what I am going through. Thanks for reading, I really appreciate it.

Tim

Did you get vaccinated for your trip? Sometimes damage from vaccinations take time to show up on the ncs/emgs.

[tholden85]

Originally Posted by February

Did you get vaccinated for your trip? Sometimes damage from vaccinations take time to show up on the ncs/emgs.

Yes I did get a few vaccinations a couple of weeks before I left. I was vaccinated for hepatitis A, Typhoid, boostrix (diptheria, tetanus, whooping cough). I also was taking malaria prophylaxis (lariam) as well.

Thanks Febuary

[Lara]

Hi Tim, and welcome.

I was just reading your posts and you didn't mention Yellow Fever vaccination as well? I thought that one would be mandatory for travel to Africa.

If so you may want to read

Autoimmune Diseases
Volume 2014 (2014), Article ID 473170, 8 pages
http://dx.doi.org/10.1155/2014/473170

Occurrence of Autoimmune Diseases Related to the Vaccine against Yellow Fever
________

If not, just ignore.

[KateKline]

Tim, sounds similar to my SFN symptoms....not the intensity of onset.....mine came on suddenly after a car accident. Good luck to you. Kate

[tholden85]

Originally Posted by glenntaj

--you wouldn't have an isolated small-fiber neuropathy.

Small, unmyelinated fibers subsume the sensations of pain and temperature, and a number of autonomic functions, but no motor functions, and you certainly had motor symptoms (all motor nerve are myelinated).

This sound like it could have been an acute attack of myelitis (an inflammation of the spinal cord that has numerous possible etiolgies--especially infectious, and you were in Africa at the time), or even possibly a Guillan Barre or variant episode. (The window of opportunity to find definite evidence of these is rather narrow and may have been missed.) It seems like you've gotten some motor recovery, which is consistent with these possibilites (and also with an initial attack of relapsing-remitting MS), but it is certainly true that recovery may be incomplete, and often some symptoms persist and new ones appear--and it is difficult to distinguish a Guillan Barre episode from a subacute presentation of chronic inflammatory demyelinating polyneuropathy (CIDP--often considered the "chronic" version of Guillain Barre).

You may need continued testing--nerve conduction studies, EMG, MRI's of brain /spinal cord--to see if any of the signs of these do reveal themselves in time.

Thanks Glenn,

My neuro originally thought it was a spinal cord issue as my symptoms were very symmetrical and seemed to have a definite level (ie below my waist) where they started. However nothing showed up on the several MRI's and since then my arms, hands and face have become involved.

It is certainly true that I originally had some loss of strength and movement indicating motor involvement. On both of my emg's my neuro said that there was a slight abnormality however was only very minor and it could be inflammation and that it did not really give him any clue as to what it might be.

Would MS cause these body wide sensory changes in the presence of two normal MRI's? Does it often take time for these peripheral neuropathies such as CIDP to show up in nerve studies?

[tholden85]

[QUOTE=Lara;1162444]Hi Tim, and welcome.

I was just reading your posts and you didn't mention Yellow Fever vaccination as well? I thought that one would be mandatory for travel to Africa.

________




I actually had the yellow fever vaccine 3 years earlier before going to south america. Interesting reading though. They never tell you these things when
you get a vaccine.