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Undiagnosed Spinal Cord Inflammation/lesions - Anyone Similar?




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#1 bru

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Posted 30 August 2009 - 08:14 PM

I was a healthy fit 29yr old with no medical problems apart from the odd self inflicted sports injury when I suddenly became a paraplegic at T7/8 (incomplete).

I had leg weakness in my left leg for maybe 10 days and then suddenly I got out of bed to go for a pee in the middle of the night, took a few steps, fell over and it was total system shutdown from then onwards.

At hospital they did what they always seem to do - a load of high dose of steriods and an MRI. The doctors said that they could see an area of severe inflammation at T7/8. Anyway nothing improved and then I agreed to a biopsy and they removed half of this area of inflammation and sent it away for testing. No-one could work out what has caused it and whether it will go away.

I have had subsequent scans and the lesion/inflammation has grown more in the space of a year. My injury level seems to have stayed the same irrespective of the growth but obviously could get worse.

Since this has happened I have been treated for all Sexually Transmitted Diseases, TB, Bilharzia (Schistosomiasis) and numerous other diseases all without any luck. I have travelled a lot in Africa and the docs thought that it must be some kind of infectious disease.

I can move my toes on both feet, have some sensation on my left side, my umm...general... still works but everything else is as you'd expect from an SCI. My bladder is a mess and leaks continuously and my bowels are so tempermental that the slightest change in my diet causes an intestinal mushroom cloud.

I would really love to hear from people who have had undiagnosed or infectious disease related SCI's or know someone with a similar story as this situation is really beginning to irritate me. I am beginning to come terms with the paraplegia but the whole undiagnosed issue is driving me nuts.

Anyways any ideas or thoughts would be greatly welcomed.

#2 qbounce

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Posted 02 September 2009 - 06:47 PM

Bru,
You'd think in today's medical field everything would be known, and diagnosis of any matter would just be a matter of a short time, after a couple of tests. But nope, especially when dealing with the neurological system, nothing is set in stone. And no two doctors will agree on the same test results all the time.

Hell, I've even had a doctor tell me I'm actually a C5-6 injury based on an MRI he saw, even though I've had other multiple doctors tell me otherwise . . . rediculous.

Hope you find the answers your looking for, and sooner rather than later.
When we remember we are all mad, the mysteries disappear and life stands explained. - Mark Twain

#3 rue2you

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Posted 03 September 2009 - 02:39 AM

I am in the same boat as you are and I certainly understand your frustration. I have been told it was MS, then it is not MS, then maybe a spinal stroke, then no it wasn't, and the truth is, they don't know. There is no evidence on the MRI of anything happening (although they couldn't do an MRI until I was 5 months past being paralyzed due to me being pregnant and would pass out if I laid on my back). They are sending me to Cleveland Clinic here in Ohio to see if they can find out what is going on. I had neurological symptoms all of 2008 and woke up paralyzed (L3 level) in March of 09.
Who knows....I'm sorry for you.
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#4 clare-australia

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Posted 09 September 2009 - 10:09 AM

HI
I was 25yo fit and active. I had very occasional twitches in my legs but I had broken both my legs in a car accident in 2005. On the 23rd of july last year I felt fine - a little tired but I had just returned to my training schedule of kayaking, swimming and cycling after having 4 weeks off, so I thought nothing of it.
I woke at around 11 pm with terrible pain in my back, the following morning I had pins and needles down my right leg and difficulty initiating voiding (trouble urinating). I took a few panadine forte to take the edge off the pain and went to work. The symptoms progressed and I was hospitalised on the 25th and could no longer walk. I was partially paralysed from the chest down.
CT and MRI showed blood on my spine from C5 to T12
As yet the doctors still don't know what caused the bleed. No signs of a tumour (1st hypothesis) of Atriovenous malformation (2nd idea).
I'm classed as an incomplete T5 paraplegic.
I can walk slowly, have problems with spasticity mainly on left side, bladder and bowels are dodgey - still trying to work it out. I'm not getting worse overall but i'm up and down with fatigue so being back at work is a struggle. I was definitely walking a lot worse, and bowel and bladder were worse, for a few months earlier this year, but tests showed not change on spine so we (me and my therapy team) put it down to fatigue.
I don't know if this helps you, but happy to chat about it anytime. It sucks, I miss my active life style so much!!

Clare

#5 bru

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Posted 11 September 2009 - 01:32 PM

Thanks for the information everyone.

I might have to send my story to the producers of House - they seem to be the only doctors with any answers.

Seriously - thanks and good luck to all of you.

Bruce

#6 cathie

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Posted 13 September 2009 - 05:07 AM

I'm in a similar situation. I became paralysed in June 2008 at about T12 after progressive symptoms since March 2008 and they have no idea what has caused it. I was 22 and fairly healthy physically before that. They found that I have mild Osteoarthritis in my lumbar and cervical spine, but it's not severe enough to cause the paralysis. After 18 months of seing Neurologists, Rheumatologists, Urologists, inpatient stays and rehab (finished December 2008, physio recommenced in July 2009), I have been told that they have no diagnosis and no idea if it will get better, stay the same or get worse. After my last appointments in July and September I have been told that there is no reason to be under the specialists as they will probably never know what is wrong. The only reason I can see the neurology team again is if my GP thinks it is necessary. The only suggestion they have had is that it is something psychological and to see a Psychiatrist. I was under a psychiatrist when this started for other things and they have said it is not psychological and to go back to Neurology.

As a result of this I am only under my GP and a physio, OT, and podiatrist. I have been trying to get funding for a new wheelchair as mine is about to fall apart and is having to be fixed weekly to keep it from falling apart. Can't get funding without a diagnosis and my GP is of the opinion that I should try to walk as much as possible without any aids at all! I ended up in the wheelchair because I was dong this with my last GP using forearm crutches and kept having falls and the paralysis had been getting worse the more I did. My Physio is absolutely hopping mad about the ignorance of my GP after seeing what I can do and has said it's not at all safe for me to walk even with an aid. I can walk maybe 20 meters on a good day, but my feet turn in, I have drop foot in both feet and very little balance along with spasms and severe pain that increase with walking. Most days I can't even stand up. So I guess I can understand your frustration at not knowing.

Sorry for the :drooldrip:
Cathie

#7 bru

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Posted 14 September 2009 - 12:55 PM

Hi Cathie,

Thanks for sending me your information - I am sorry to hear that you have been given such a run around. Also, expecting health professionals to do their jobs properly is not ranting! I understand your frustration - dealing with disability is one thing but the not knowing is a real pain.

Have you been MRI'd? If so it would be interesting to hear/see what your scans look like.

Well the only thing both of us can really hope for is some kind of improvement as 'undiagnosed' can hopefully mean regaining neurology at some stage,

Take care,

Bruce

I'm in a similar situation. I became paralysed in June 2008 at about T12 after progressive symptoms since March 2008 and they have no idea what has caused it. I was 22 and fairly healthy physically before that. They found that I have mild Osteoarthritis in my lumbar and cervical spine, but it's not severe enough to cause the paralysis. After 18 months of seing Neurologists, Rheumatologists, Urologists, inpatient stays and rehab (finished December 2008, physio recommenced in July 2009), I have been told that they have no diagnosis and no idea if it will get better, stay the same or get worse. After my last appointments in July and September I have been told that there is no reason to be under the specialists as they will probably never know what is wrong. The only reason I can see the neurology team again is if my GP thinks it is necessary. The only suggestion they have had is that it is something psychological and to see a Psychiatrist. I was under a psychiatrist when this started for other things and they have said it is not psychological and to go back to Neurology.

As a result of this I am only under my GP and a physio, OT, and podiatrist. I have been trying to get funding for a new wheelchair as mine is about to fall apart and is having to be fixed weekly to keep it from falling apart. Can't get funding without a diagnosis and my GP is of the opinion that I should try to walk as much as possible without any aids at all! I ended up in the wheelchair because I was dong this with my last GP using forearm crutches and kept having falls and the paralysis had been getting worse the more I did. My Physio is absolutely hopping mad about the ignorance of my GP after seeing what I can do and has said it's not at all safe for me to walk even with an aid. I can walk maybe 20 meters on a good day, but my feet turn in, I have drop foot in both feet and very little balance along with spasms and severe pain that increase with walking. Most days I can't even stand up. So I guess I can understand your frustration at not knowing.

Sorry for the :P
Cathie



#8 cathie

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Posted 14 September 2009 - 02:10 PM

Hi Bruce,

I was just saying to my friend last week how much of a run around I was getting. I had to go for an appointment with the rheumatologist (550km and 10 hours each way) just to be told that I had come in to get a blood test result and that it was normal! I was also the last patient seen and the hospital has a policy that all country patients are seen first, even if they are running behind.

I have had 3 MRI's of my entire spine and 2 of my brain (May 08, Aug 08, Jan 09). All they showed was the osteoarthritis and herniated discs at C7 & L2,3 & 4. The Dr's have said that none of this is severe enough to cause any problems at all. I also have had a nerve conduction study and somatosensory testing done which were abnormal, but the results were dismissed as they can't find a cause for the abnormal results.

My last GP was fighting for answers, my current one is just accepting what the specialists are telling him. If I had the choice I wouldn't have moved 550km from my old GP as she had been following this right from the start. My current GP referred me to the urologist after my bladder completely shut down and I had been insisting for 2 months. His plan now is to send me to pain management, keep up with the physio and make me walk (Which is even more frustrating). I have severe back pain in the lumbar, mid thoracic and cervical areas constantly and have just maxed out my current pain med, am mixing with another and am limited to what I can take due to allergies and other meds I'm on.

I will always have some problems from a 10 year old C7 incomplete injury (I was able to walk normally, but still had the bladder and bowel issues and some issues with my hands.), but I can always hope to recover back to that level. Hope you get some answers too.

Cathie

Hi Cathie,

Thanks for sending me your information - I am sorry to hear that you have been given such a run around. Also, expecting health professionals to do their jobs properly is not ranting! I understand your frustration - dealing with disability is one thing but the not knowing is a real pain.

Have you been MRI'd? If so it would be interesting to hear/see what your scans look like.

Well the only thing both of us can really hope for is some kind of improvement as 'undiagnosed' can hopefully mean regaining neurology at some stage,

Take care,

Bruce



#9 blacklionent

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Posted 16 September 2009 - 02:15 AM

Don't know where to start. I have disk degeneration at L4-5-S1, Spondylolisthesis at L4-5 but not sure yet if it's stable or unstable. Should find out Friday (3 days). I have had multiple MRI's of head, spine and lumbar. I have "something" located at T11-12 and it's been growing. It's now 33 mm which is MORE than double the size it was in 2006. It's grown from 28 mm - 33 mm just from March 30 to June 23. They thought it was a syrinx for years now but it did not enhance. They tell me that syrinx's don't grow and are not located where mine is. Tumors grow but usually enhance. The current diagnosis is none. I have a panel of neuro's and neuro surgeons evaluating my case and multiple MRI"s to see what the concensus is. Bottom line is.... surgery, microscope to see what it is and surgery to fix "it". I was told surgery is very risky and I could end up paralized. I'm actually thinking that may not be as bad as the pain, the lower body "hum, vibrations" the losing my balance and bladder / bowel functions randomly. Any ideas on how to get a good surgeon, a good surgery, a good recovery? Not scared really, I just like to know what I'm facing so I can plan on how to deal with it the best. I do better with information than no idea. My Dad lived with me the last few years of his life and was in a wheel chair, double amputee. I was his care giver. Thanks for the help and support. OH, and just and FYI, I have multiple autoimmune disorders, syndromes and diseases.... last count was close to 30. I used to be the Board Researcher for the International Stills Disease Foundation. www.stillsdisease.org till I got too sick. My bio is there. I can't figure out how to do it here. Thanks in advance for any help offered.

#10 adam_downunder

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Posted 16 September 2009 - 04:39 AM

I was a healthy fit 29yr old with no medical problems apart from the odd self inflicted sports injury when I suddenly became a paraplegic at T7/8 (incomplete).

I had leg weakness in my left leg for maybe 10 days and then suddenly I got out of bed to go for a pee in the middle of the night, took a few steps, fell over and it was total system shutdown from then onwards.

At hospital they did what they always seem to do - a load of high dose of steriods and an MRI. The doctors said that they could see an area of severe inflammation at T7/8. Anyway nothing improved and then I agreed to a biopsy and they removed half of this area of inflammation and sent it away for testing. No-one could work out what has caused it and whether it will go away.

I have had subsequent scans and the lesion/inflammation has grown more in the space of a year. My injury level seems to have stayed the same irrespective of the growth but obviously could get worse.

Since this has happened I have been treated for all Sexually Transmitted Diseases, TB, Bilharzia (Schistosomiasis) and numerous other diseases all without any luck. I have travelled a lot in Africa and the docs thought that it must be some kind of infectious disease.

I can move my toes on both feet, have some sensation on my left side, my umm...general... still works but everything else is as you'd expect from an SCI. My bladder is a mess and leaks continuously and my bowels are so tempermental that the slightest change in my diet causes an intestinal mushroom cloud.

I would really love to hear from people who have had undiagnosed or infectious disease related SCI's or know someone with a similar story as this situation is really beginning to irritate me. I am beginning to come terms with the paraplegia but the whole undiagnosed issue is driving me nuts.

Anyways any ideas or thoughts would be greatly welcomed.


Transversemyelytis perhaps?
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#11 allister

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Posted 26 September 2009 - 11:53 PM

Hi Bru

In reply to your post, I too am left in No mans Land at present. Whilst I know some of the causes and the back ground leading up to my paralysis, I don't know what actually caused the Paralysis.

The brief background is......

1984 ( I was 19) slammed sideways in RTA and shunted 30 yrds down the road. 5 dscs displaced and 2 yrs physio to rectify the problems.

next 17yrs fairly uneventfull, the occasional slipped disc, but nothing major.

2001, April. Herniated L4 L5 picking up a plant pot!

2001 June. Partial Discectomies L4 L5 and lateral canal decompression

2001 July. Herniated L4 L5 again by sitting up!

2001 Oct. Revision Partial Discectomies at L4 L5 and lateral canal revision decompression

Oct 2001 - July 2009 Chronic pain and poor mobility, Diagnosis - Degenerative discs. High levels of meds and 'walked' with two sticks 20-25ftmax, used w'chair outdoors, Retired from work in 2001 aged 36. From Sept 2008 pain levels began to rise to reach new all time unbearable highs, balance went compleatly.

2009 July 09th. Bladder and bowels became flacid. Bladder self voided 11th july for last time

2009 July 13th. addmitted into hospital through A&E with water retention. Was catheterised, and placed on spinal ward. By that evening I'd lost use of legs and all below waist. Had Lumbar MRI, Head/brain MRI, Full spinal MRI . No further 'structual' issues detected, showed the scarring on spinal cord at L4 L5 from previous operations, and diagnosis.

2009 July 16th. Transfered to Neurology ward. Under went just one investigation. . . .Elctromyography. A Barbaric torture. Showed that neuropathways from brain to feet were sending-receiving signals, albeit slowly. Concluding that brain signals should be beig sent/received to lower limbs. All I can feel below waist is pressure on legs-feet. No Sharps, hot/cold. Get a few spasms in legs, and lots in bladder.

2009 July 29th. Self discharged from Hospital after laying in a bed for ignored. Just One 10min physio in all the time I was in hospital. Neuro Professor whom I had seen just once for 5 mins gave a his diagnosis of "Functional Paralysis". Saying my body had had enough of the chronic pain over the past 8 years and simply 'Switch Off'.
You should get useage back. May take 2 days - two weeks - 20years,who knows! It could just be partial, one sided, with or without pain.

Biggest load of BULL I have ever heard.

My GP fought to get me a referal to the Sheffield Spinal Unit, and my appt is 10th Nov 2009. I have no idea what / if they can help. in the meantime, I remain cathetered, uncontrollable bowels, paraplegic.

So like you, severly fustrated , eager for information and although trying to move forward, need answers to enable this. I have had no rehab, or teachings to live as a paraplegic. I relay on my partner who has ad to resign from their job to care for me, a care assistant 1 hour a day to get me up, bed wash( as I can not access our bathroom) and dress me. Distict nurse team for continence issues.

If I hadn't got my own wheelchair I would be still in a locked neurology ward, going demented.

It seems impossible to get help - info - answers, despite firing questions at all angles.

Hope you find your answers Bru, same as I hope sheffield can enlighten me.
Learn from yesterday, live for today, hope for tomorrow.

#12 qbounce

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Posted 27 September 2009 - 04:16 AM

I guess we can call this "the lonely hearts club of undiagnosed problems," thread.

I've been dealing with a degenerative sensory function and some motor function since April of 08.
Other symptoms as well, but the main one is sensory loss.

I read a recent article in the New Mobility Magazine that talked in depth about Tethered Cords. There was alot of info that raised my eyebrows regarding SCI and how many of us go through the same problems post injury.

I'm going to type ver batem certain KEY POINTS in the article, as it explains alot of what I'm dealing with. . . . maybe others too.

Dr. Falci explained spinal cord tethering---formation of scar tissue at the injury site that limits cerebral spinal fluid flow and cord movement in the canal---and its symptoms. He added that virtually all spinal cords are tethered to some degree.

"In my experience,"Falsi says, "all people sustaining traumatic spinal cord injury develop tethered spinal cords, though not all of them develop significant symptoms. In over 800 surgeries, I've always found cord tethering, even when the MRI doesn't show it."

Some symptoms include:
loss of sensation and function
decreased strength
increased fatigue
derease in bladder and bowel function
increased pain and spasticity
more adema
AD

And how often does this happen? Falci suspects less than 10% of all SCI's develop tethering to a degree requiring surgery, but UCLA's Ulrich Batzdorf thinks it may be closer to 20%.

The overwhelmng majority seek intervention because of motor and/ or sensory loss. Less than 20% cite autonomic dysreflexia alone; an even smaller percentage are motivated solely by increased spasticity or pain.


Bottom line is, if you have a SCI, you have a tethered cord due to scar tissue that's formed around the canal. You may not have any symptoms . . . . . yet. They could come in 2 years post, or 20. But we all stand this risk, and SCI isn't a stable injury, infallable of losing more function.

So, the only way to solve this problem is to "untether" the scar tissue through a very invasive, 10+ hour surgery. It could include a shunt if you have a syrinx. But, just because your doctors can't see a diagnosed tethered cord, doesn't mean it isn't there. Read the symptoms. The New Mobiity Magazine article was from March 2009, "Untethering The Invisible Knot."

I had to add, this is obviously the last resort, when all tests and diagnosis hit a wall. That's where I'm at anyway. My last neurosurgeon said I'm going to deteriorate and that's that. Well, I'm not buying it! So I have to do another round, go to yet ANOTHER neuro, this time with some ammo (helpful information), that might steer me to a direction that could possibly get some function that I've lost back.
When we remember we are all mad, the mysteries disappear and life stands explained. - Mark Twain

#13 allister

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Posted 29 September 2009 - 01:38 AM

I guess we can call this "the lonely hearts club of undiagnosed problems," thread.

I've been dealing with a degenerative sensory function and some motor function since April of 08.
Other symptoms as well, but the main one is sensory loss.

I read a recent article in the New Mobility Magazine that talked in depth about Tethered Cords. There was alot of info that raised my eyebrows regarding SCI and how many of us go through


Q, Found your comments very interesting. As you know I hav had no firm diagnosise, and still waiting to go to the Spinal unit. A little info can go a long way.
Many thanks my friend
Al
Learn from yesterday, live for today, hope for tomorrow.

#14 allister

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Posted 01 October 2009 - 11:07 PM

http://en.wikipedia....l_cord_syndrome

There's alot of interesting reading here. Rang a few bells with me, an gave pause for thought.

Never heard of this till Q's post above, so Thanks Q. Now got both barrels loaded and ready to fire when I get to spinal unit 10th november.

:double-puke:
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