joastudio
11-02-2006, 05:12 AM
Spelled Neuro wrong...I just joined this board to find help for my daughter, who at 28 (and now pregnant) has had foot drop for 1 year. SHE had NO surgery, and that is the most common cause of foot drop, or some injury trama to the leg/knee or back. She's had none she is aware of. Her foot started flapping one day she noticed it walking. about the same period, she started having hip pain. Doctor MRI'd and CT scanned, sent her to an orthopedic specialist who put her on prednisone for 3 weeks.
All Tests and bloodwork showed nothing. On her own, she went to a Neurologist. He worked w/her doing test for MS, MG, and many other things that can also cause this; tumor on the back, brain, etc. Nothing. She had what I am convinced is the only thing a neurologist KNOWS HOW TO DO... an EMG. THis is a nasty thing where they stick needles in your leg and send little electrical pulses to measure the degree of damage to your nerves. YOu can look up EMG on med. websites and it tells you better.
Months go by. Pain in hip mostly went away, and now we think if she'd stayed on the prednisone, which she refused at the time cause it didn't seem to be an answer, just something to do when they don't know anything, it would have gotten better. Her foot is worse all the time and her limp is worse. Leg is cold. Numbness. She can barely wiggle toes. Falling more.
SO...she went bad to her primary care doc, and he sent her to a 2nd neuro. He did another PAINFUL, EMG. Sent her to outpatient for a Myleogram/Spinal tap. (She was pregnant then and didnt know it.) This test showed nothing, but she had a horrific pain in her lower spine which shot down her leg, when they turned her over on the table. They were shocked and said this NEVER happens, and it eased off, and no doctor has been able to tell her why that happened. The doctor on duty just blew it off, saying that never happens. YET, they say there is nothing on her spine doing this. Leg is now getting warm again, but she can only move 1 toe. Limp is bad and she falls all the time.
This Neuro sent her to Another one, at Wake FOrest Univ. Baptist Med. Ctr, here in town. HE wasnt' available, so they gave her another Neuro. She saw my daughter, and all the tests results, had not CLUE, and said, well I could do another EMG.... she said no, so they she had to wait and see the 1st guy she was suppose to see, a month later to wait... By now she has lost all toe movement. (She is going to a Physical Therapist one neuro said to do. He recommended a brace $400... that is this plastic piece that is form fitted to bottomof her foot and goes up her leg to knee.) So she finally sees the 4th Neuro, a neuro-muscular specialist. He looks at the 2 EMGs she's had and all her tests, and says she showes improvement on the 2nd EMG, so he thoughtit was a virus and is getting better. Said a virus can run a course of 280 days before healing. Said to wear the brace at work to keep from falling, but not at home. Come back in 2 months.
She didn't fall as bad w/the brace, then she got weaker real fast from using it, we think, and started falling WITH it. She fell and twisted the knee. LEg is atrophying. The other leg is now showing signs of flapping. PTherapist gave up and said nothing he did was helping, go back to doc. She did, and he said hmmm well he didn't know.. must not be a virus...hmm he COULD do another EMG....:blob_fire :mad:
She got her primary care to refer her to a Neuro SURGEON. Waited 2 months for that appt. She saw him last week, he ordered 2 MRIs of neck and lower spine without dyes (pregnant), to see if anything they missed. NOTHING. nothing nothing nothing. He said he'd keep looking and consult his colleagues.
So here we are, her getting worse by the day, unable to go up/down the steps in her house, trying to sell house and move. She is so frustrated and worried she can't carry her baby across the room without falling. PLus, she started a new job in June. Stress factors.
We are willing to get her anywhere. Duke is here, but they won't refer her there; the doctors here just don't pursue it once its not an easy answer. Mayo Clinic... anything... but they won't refer her, and pregnant she can't have tests which they would start all over I guess...I hope someone reads this and will help my daughter. I"m in remission from stage 3 Lung cancer and have the biggest fear I won't be here to help her.
All Tests and bloodwork showed nothing. On her own, she went to a Neurologist. He worked w/her doing test for MS, MG, and many other things that can also cause this; tumor on the back, brain, etc. Nothing. She had what I am convinced is the only thing a neurologist KNOWS HOW TO DO... an EMG. THis is a nasty thing where they stick needles in your leg and send little electrical pulses to measure the degree of damage to your nerves. YOu can look up EMG on med. websites and it tells you better.
Months go by. Pain in hip mostly went away, and now we think if she'd stayed on the prednisone, which she refused at the time cause it didn't seem to be an answer, just something to do when they don't know anything, it would have gotten better. Her foot is worse all the time and her limp is worse. Leg is cold. Numbness. She can barely wiggle toes. Falling more.
SO...she went bad to her primary care doc, and he sent her to a 2nd neuro. He did another PAINFUL, EMG. Sent her to outpatient for a Myleogram/Spinal tap. (She was pregnant then and didnt know it.) This test showed nothing, but she had a horrific pain in her lower spine which shot down her leg, when they turned her over on the table. They were shocked and said this NEVER happens, and it eased off, and no doctor has been able to tell her why that happened. The doctor on duty just blew it off, saying that never happens. YET, they say there is nothing on her spine doing this. Leg is now getting warm again, but she can only move 1 toe. Limp is bad and she falls all the time.
This Neuro sent her to Another one, at Wake FOrest Univ. Baptist Med. Ctr, here in town. HE wasnt' available, so they gave her another Neuro. She saw my daughter, and all the tests results, had not CLUE, and said, well I could do another EMG.... she said no, so they she had to wait and see the 1st guy she was suppose to see, a month later to wait... By now she has lost all toe movement. (She is going to a Physical Therapist one neuro said to do. He recommended a brace $400... that is this plastic piece that is form fitted to bottomof her foot and goes up her leg to knee.) So she finally sees the 4th Neuro, a neuro-muscular specialist. He looks at the 2 EMGs she's had and all her tests, and says she showes improvement on the 2nd EMG, so he thoughtit was a virus and is getting better. Said a virus can run a course of 280 days before healing. Said to wear the brace at work to keep from falling, but not at home. Come back in 2 months.
She didn't fall as bad w/the brace, then she got weaker real fast from using it, we think, and started falling WITH it. She fell and twisted the knee. LEg is atrophying. The other leg is now showing signs of flapping. PTherapist gave up and said nothing he did was helping, go back to doc. She did, and he said hmmm well he didn't know.. must not be a virus...hmm he COULD do another EMG....:blob_fire :mad:
She got her primary care to refer her to a Neuro SURGEON. Waited 2 months for that appt. She saw him last week, he ordered 2 MRIs of neck and lower spine without dyes (pregnant), to see if anything they missed. NOTHING. nothing nothing nothing. He said he'd keep looking and consult his colleagues.
So here we are, her getting worse by the day, unable to go up/down the steps in her house, trying to sell house and move. She is so frustrated and worried she can't carry her baby across the room without falling. PLus, she started a new job in June. Stress factors.
We are willing to get her anywhere. Duke is here, but they won't refer her there; the doctors here just don't pursue it once its not an easy answer. Mayo Clinic... anything... but they won't refer her, and pregnant she can't have tests which they would start all over I guess...I hope someone reads this and will help my daughter. I"m in remission from stage 3 Lung cancer and have the biggest fear I won't be here to help her.
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6foot3
11-02-2006, 06:27 AM
Joastudio ......I'll try to give you some answers. First you keep mentioning that they did an EMG but they should also always do a NCV test with it (nerve conduction velocity)This is where they attached an electrode and shock the nerves along with the EMG where they stick needles in the muscle and you tense the muscle and again these machines register it. Yes these are not fun but they have to be done so a qualified neurologist can tell if it ALS (motor neuron disease) or an Axonal or Demyelinating neuropathy. If she has numbness then you can rule out ALS. So then what causes these predominate motor neuropathys is an immune attack...
The most common of these are Guillain Barre and CIDP (chronic inflammatory demyelinating poly neuropathy).The immune cells (T-Cells) are attacking the nerve coatings (myelin) and hence paralysis is the result.Sometimes in Guillian Barre it comes after a tetnus or flu shot as this fires up the T-cells for the auto immune attack. Other times like CIDP it comes out of nowhere and slowly progresses worse. Besides the EMG/NCV test the gold standard on testing for this is the Lumbar Puncture and the spinal protein count is checked. If this is elevated then there's your problem.....
The predisone may have helped at first because its an immune calmer. So now what to do..If this is the diagnosis then treatments at the hospital about 4 times a month of IVIG treatments of Immunoglobulin is how they treat this.(calms the T-cells).If her neurologist did not give you answers like i did then find the nearest MDA clinic (muscular dystrophy association) in your state/area as they are the specialist to these muscle/nerve diseases. Look this info up and do some research then decide if thats what your looking at.
Best Wishes.......
The most common of these are Guillain Barre and CIDP (chronic inflammatory demyelinating poly neuropathy).The immune cells (T-Cells) are attacking the nerve coatings (myelin) and hence paralysis is the result.Sometimes in Guillian Barre it comes after a tetnus or flu shot as this fires up the T-cells for the auto immune attack. Other times like CIDP it comes out of nowhere and slowly progresses worse. Besides the EMG/NCV test the gold standard on testing for this is the Lumbar Puncture and the spinal protein count is checked. If this is elevated then there's your problem.....
The predisone may have helped at first because its an immune calmer. So now what to do..If this is the diagnosis then treatments at the hospital about 4 times a month of IVIG treatments of Immunoglobulin is how they treat this.(calms the T-cells).If her neurologist did not give you answers like i did then find the nearest MDA clinic (muscular dystrophy association) in your state/area as they are the specialist to these muscle/nerve diseases. Look this info up and do some research then decide if thats what your looking at.
Best Wishes.......
michigani
11-02-2006, 03:37 PM
Joastudio,
I probably can't help to much but I will try to give a little input. I'm not a doctor, but unfortunately my family has a mile-long rap sheet of neurological problems, including my own case of Muscular Dystrophy (I'm a 45 year old white male).
Reading your post the first things that came to my mind were many of the things that 6foot3 mentioned: ALS, Guillain-Barre Syndrome, Vasculitis (my sister had this and went through a similar ordeal which you described).
I tend to agree with the idea of contacting your local MDA Clinic. They've been great to me and will help steer you in the right direction even if it isn't MD (muscular dystrophy). I hope it isn't and that your daughter is okay. Best of luck. Sincerely,
Mark
I probably can't help to much but I will try to give a little input. I'm not a doctor, but unfortunately my family has a mile-long rap sheet of neurological problems, including my own case of Muscular Dystrophy (I'm a 45 year old white male).
Reading your post the first things that came to my mind were many of the things that 6foot3 mentioned: ALS, Guillain-Barre Syndrome, Vasculitis (my sister had this and went through a similar ordeal which you described).
I tend to agree with the idea of contacting your local MDA Clinic. They've been great to me and will help steer you in the right direction even if it isn't MD (muscular dystrophy). I hope it isn't and that your daughter is okay. Best of luck. Sincerely,
Mark
joastudio
11-03-2006, 06:18 AM
Thanks 6FOOT1 and MARK: she did have the electrode shocking that you mentioned, when having the 2 EMGs by 2 different neurologists. She was also given a globulin treatment intravenous, early on, at the 1st neurologist's colleague's suggestion. IT did nothing but give her the worst killer headache she'd ever known.
They have tested and all neuros say after seeing her tests, taht it is not MS, MD, or G-Barre. The last neuro said it was virus and would run course of 280 days and get better and go away. It has gotten alot worse, and now he says he doesnt' know what it is, and offers nothing else. This is a well known neuromuscular spec. with Wake Forest Univ. Baptist Med. Ctr. here in Winston-Salem, NC.!) Now he won't even return her call. Nor will the head of the Neuro. department, who wanted to stay informed on her case. Her primary care doctor told her to call them back and ask for a referral to someone that knows more in this area, but they won't return the ___call.
The neurosurgeon reviewed her repeat MRIs he ordered (no dyes-pregnant), that showed nothing new, this Tuesday. THis older man has been recommended to her by other people that got on results with neurologists, but HE fixed them. Every time I mention his name, someone knows of him.
I wrote him and asked that he please not give up on her, as he was our last hope. He called and included me on speakerphone with her permission, during her appt. He said there was no tumor, didn't think it was a virus, didn't see point in more EMGs, also because pregnant, didn't thing a nerve biopsy was a good idea as it could damage what is there, but would consult his colleagues and would stick with he til someone figured it out.
Yes she had a spinal tap and myleogram, which were also negative. The results were not in the records from the great WF guy, so the neurosurgeon is gonna request them.
Now she has sent me a link about motor neuron desease that eats your body til it kills you.
Thanks and write back; I invite questions and comments, I got nothing else to try.:rolleyes:
They have tested and all neuros say after seeing her tests, taht it is not MS, MD, or G-Barre. The last neuro said it was virus and would run course of 280 days and get better and go away. It has gotten alot worse, and now he says he doesnt' know what it is, and offers nothing else. This is a well known neuromuscular spec. with Wake Forest Univ. Baptist Med. Ctr. here in Winston-Salem, NC.!) Now he won't even return her call. Nor will the head of the Neuro. department, who wanted to stay informed on her case. Her primary care doctor told her to call them back and ask for a referral to someone that knows more in this area, but they won't return the ___call.
The neurosurgeon reviewed her repeat MRIs he ordered (no dyes-pregnant), that showed nothing new, this Tuesday. THis older man has been recommended to her by other people that got on results with neurologists, but HE fixed them. Every time I mention his name, someone knows of him.
I wrote him and asked that he please not give up on her, as he was our last hope. He called and included me on speakerphone with her permission, during her appt. He said there was no tumor, didn't think it was a virus, didn't see point in more EMGs, also because pregnant, didn't thing a nerve biopsy was a good idea as it could damage what is there, but would consult his colleagues and would stick with he til someone figured it out.
Yes she had a spinal tap and myleogram, which were also negative. The results were not in the records from the great WF guy, so the neurosurgeon is gonna request them.
Now she has sent me a link about motor neuron desease that eats your body til it kills you.
Thanks and write back; I invite questions and comments, I got nothing else to try.:rolleyes:
6foot3
11-03-2006, 07:17 AM
Joastudio.....You can research these diseases on the web and see if they match up to her symptoms. They are ALS, CIDP and Multi Focal Motor Neuropathy. The only virus that causes paralysis that i know of is ''Polio''. Again i strongly suggest as did the other poster ''Mark B'' about contacting the MDA. When i last checked their site they mention that they are fighting 40 different Neuromuscular diseases. Jerry Lewis helps every year to raise about 60 to 70 million in research. They have a great site with info you're looking for and also where the clinics are....
Best Wishes to her.......
Best Wishes to her.......
moderator2
11-03-2006, 10:34 AM
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feelbad
11-03-2006, 10:52 AM
i have to first say i am sooo sorry for what your daughter and you are having to go thru.what a nightmare.i have to say tho that the whole time i was reading thru what your daughters symptoms have been like,that i was thinking ALS,really.your daughters symptoms just fit almost exactly with a really dear freind of mine who was suffering from ALS.hers also started with foot drop then slowly progressed upwards.have any of her docs actually mentioned this as a possibility?this just appears to me and from what i was told and saw in my friend to be a case of ALS.if i were you,i would try doing some really in depth research on this and see how closely those symptoms actually fit with it.this would explain her symptoms.i am hoping this is not it but honestly,it really does sound like it.hang in there,and take care,hopefully they will be able to find out soon just what is going on with her.please let us know how things go,K.your daughter will be in my prayers.marcia
michigani
11-03-2006, 12:25 PM
joastudio,
When my sister contracted Vasculitis at age 36 it started with numbness in her fingers and toes. 2 days later she could hardly get out of bed and walk. 2 days more, she woke up paralyzed from the neck down. It took 3-4 months to get her back to walking with a cane and almost a year before she was virtually okay again. It was very serious but she did survive.
The Johns Hopkins Vasculitis Center site has lots of info and case histories. The cases very greatly. The department is headed by a Dr. John Stone, one of the world's vasculitis experts.
It's a long shot but probably worth looking into. Keep us posted. Best of luck,
Mark
PS - Keep the MDA clinic in mind as well. I was misdiagnosed by my first neurologist until I went to them. ALS falls under MDA's neuromuscular diseases which they oversee.
When my sister contracted Vasculitis at age 36 it started with numbness in her fingers and toes. 2 days later she could hardly get out of bed and walk. 2 days more, she woke up paralyzed from the neck down. It took 3-4 months to get her back to walking with a cane and almost a year before she was virtually okay again. It was very serious but she did survive.
The Johns Hopkins Vasculitis Center site has lots of info and case histories. The cases very greatly. The department is headed by a Dr. John Stone, one of the world's vasculitis experts.
It's a long shot but probably worth looking into. Keep us posted. Best of luck,
Mark
PS - Keep the MDA clinic in mind as well. I was misdiagnosed by my first neurologist until I went to them. ALS falls under MDA's neuromuscular diseases which they oversee.
joastudio
11-04-2006, 12:09 AM
Hello 6FOOT3 again.
Thanks for advice. Today, my daughter has read much on people with flu shots, that right after getting the shot, got Guillion Barre S. There are many law suits because of it. She had a flu shot last year, a week or 2 later is when this started, a year ago!! She is convinced its what she has (GB), altho the neurologists she has seen over the year, were saying they don't think its that, but they are "perplexed" and don't send her anywhere for further testing. She has many similarities and the way this happened and progressed. It doesn't fit all the GB symptoms, but everyone is different. She did have tingling, and is now tingling in other leg.
THanks for your help.
Thanks for advice. Today, my daughter has read much on people with flu shots, that right after getting the shot, got Guillion Barre S. There are many law suits because of it. She had a flu shot last year, a week or 2 later is when this started, a year ago!! She is convinced its what she has (GB), altho the neurologists she has seen over the year, were saying they don't think its that, but they are "perplexed" and don't send her anywhere for further testing. She has many similarities and the way this happened and progressed. It doesn't fit all the GB symptoms, but everyone is different. She did have tingling, and is now tingling in other leg.
THanks for your help.
joastudio
11-04-2006, 12:32 AM
FEEL BAD and MARK B 61: thanks to you both for your comments. I just info she had today. Her primary care has asked her to come back in cause the neurologist he sent her to last has dropped her, and will not refer her elsewhere or call her back. The p. care doctor wants her to go to duke hosp. and have ANOTHER spinal tap. He said she could have it without dyes, being pregnant. IT was very painful before and she is afraid for her baby, but we'll see how it goes. I will share this info on the MDA and the ALS.
thanks
thanks
joastudio
11-04-2006, 12:34 AM
Mark, I wonder how the Vasculitis differs from Guillion Barre??
ar58
11-04-2006, 06:23 AM
Dear Joastudio,
You may like to advise her to see a good homeopath. There are good remedies in homeopathy that can help in such a situation. I can think of two - Phosphorus 30c and Causticum 30c. Both can help in the condition which seems to be the beginning of the ascending sensory and motor paralysis. But would advise to consult a good homeopath and they can help.
You may like to advise her to see a good homeopath. There are good remedies in homeopathy that can help in such a situation. I can think of two - Phosphorus 30c and Causticum 30c. Both can help in the condition which seems to be the beginning of the ascending sensory and motor paralysis. But would advise to consult a good homeopath and they can help.
joastudio
11-04-2006, 10:30 AM
Thanks, actually she has been to one for a while, and did before this. I personally have worried that some of the mess she was taking could have been the culprit. Being pregnant, she isn't suppose to take additves of any kind now. Also chiropractor, accupuncture... medical massage therapist... been there.
mabent
11-04-2006, 10:55 AM
Hi - When will your daughter be delivering her baby? Perhaps after her pregnancy is over and she can have the dye used, the doctors will be able to find out what is causing this foot drop and weakness in her leg. It seems that every test that is available has been given to her!!! Hopefully, it will just disappear on its own just as it appeared. Do you think the baby is positioned in a way that presses on some nerve, which is causing the foot drop and weakness? :dizzy: :angel:
michigani
11-04-2006, 06:34 PM
Mark, I wonder how the Vasculitis differs from Guillain Barre??
As a strange matter-of-fact, she was diagnosed with G-B before being correctly diagnosed with vasculitis. They apparently are very similar.
Mark
As a strange matter-of-fact, she was diagnosed with G-B before being correctly diagnosed with vasculitis. They apparently are very similar.
Mark
joastudio
11-05-2006, 12:13 AM
The Gullion Barre is similar to many things it seems; but I have read it progresses to his worse state, withing a few weeks after it starts... not sure if Drop Foot is always present.
TERRA157
11-18-2006, 11:24 PM
Foot drop has to do with the sciatic nerve. I think I know what she felt when they rolled her over on the table, Sacroiliac Joint pain. Make you want to scream it hurts so bad. Look up SIJD, or Sacroiliac Joint Dysfunction. Sounds like she might have gotten a nerve coming from the sacrum entrapped and it has possibly become compressed at the hip area.
dahlek
11-20-2006, 09:59 AM
Joastudio: You and your daughter HAVE been all over the map, Haven't you?
OK First check out a site called 'neuroexam.com' it explains what steps neuros do during exams and diagnosis and why each tests are done.
To clear up one or two points tho: MRI's use dyes for contrast and MRI's are used to see if there is any spinal damage or calcification of nerves resulting in entrapment. Nerve conduction tests do not use dyes and while they can hurt [folks report 50/50 yes a LOT or no problem] they tell a neuro how well your extremity nerves signals are travelling to the brain and back.
There are hundreds of neuro conditions that could be the problem, A nerve biopsy should only be done as a very last resort. In fact many insurance companies will not pay for it or at least recommend that ALL other testing be done. That is the route I went thru everything BUT. I would not have a biopsy if I had to unless it was a 'punch' not 'seural' biopsy.
Be aware that a spinal test will not always test positive the first time, but can at a later date. I don't think docs can positively diagnose GBS without a positive spinal tho. It's good that she got IVIG tho, it could be preventing complications. I'd go for more testing at a good research/teaching hospital. My only concern and one you both should be up-front to docs about relates to how far along she is with the baby.
I hope this helps and I'll keep you on my mind.
OK First check out a site called 'neuroexam.com' it explains what steps neuros do during exams and diagnosis and why each tests are done.
To clear up one or two points tho: MRI's use dyes for contrast and MRI's are used to see if there is any spinal damage or calcification of nerves resulting in entrapment. Nerve conduction tests do not use dyes and while they can hurt [folks report 50/50 yes a LOT or no problem] they tell a neuro how well your extremity nerves signals are travelling to the brain and back.
There are hundreds of neuro conditions that could be the problem, A nerve biopsy should only be done as a very last resort. In fact many insurance companies will not pay for it or at least recommend that ALL other testing be done. That is the route I went thru everything BUT. I would not have a biopsy if I had to unless it was a 'punch' not 'seural' biopsy.
Be aware that a spinal test will not always test positive the first time, but can at a later date. I don't think docs can positively diagnose GBS without a positive spinal tho. It's good that she got IVIG tho, it could be preventing complications. I'd go for more testing at a good research/teaching hospital. My only concern and one you both should be up-front to docs about relates to how far along she is with the baby.
I hope this helps and I'll keep you on my mind.
joastudio
12-04-2006, 07:33 AM
Joastudio: You and your daughter HAVE been all over the map, Haven't you?
OK First check out a site called 'neuroexam.com' it explains what steps neuros do during exams and diagnosis and why each tests are done.
To clear up one or two points tho: MRI's use dyes for contrast and MRI's are used to see if there is any spinal damage or calcification of nerves resulting in entrapment. Nerve conduction tests do not use dyes and while they can hurt [folks report 50/50 yes a LOT or no problem] they tell a neuro how well your extremity nerves signals are travelling to the brain and back.
There are hundreds of neuro conditions that could be the problem, A nerve biopsy should only be done as a very last resort. In fact many insurance companies will not pay for it or at least recommend that ALL other testing be done. That is the route I went thru everything BUT. I would not have a biopsy if I had to unless it was a 'punch' not 'seural' biopsy.
Be aware that a spinal test will not always test positive the first time, but can at a later date. I don't think docs can positively diagnose GBS without a positive spinal tho. It's good that she got IVIG tho, it could be preventing complications. I'd go for more testing at a good research/teaching hospital. My only concern and one you both should be up-front to docs about relates to how far along she is with the baby.
I hope this helps and I'll keep you on my mind.
Thanks for your help. SHe is now 6 months pregnant. FIFTH NEURO, (thats not counting the Nuero-surgeon) has done the 3rd EMG/NCV, shows nerve damage in both legs now, but not conclusive as to why; and the 2nd Spinal Tap (protein normal; other tests not back yet).
Both Legs just getting weaker; foot drop on right side been there a year. Left leg was tingling all along but didn't seem to get weaker until she got pregnant, we think. She got large quickly, being a very small person. Her tummy hasn't really changed in size over the past month very much. Her weight is in control and normal. Baby yoke sac was deflated at first and they said she was "high risk" but now all appears to be normal.
BOTH LEGS now are so weak, getting worse by the day. By the DAY. She uses arm crutches, is all she can do to climb steps, and walk up a slight incline, or decline. They tell her physical therapy or exercise will do no good, which is stupid advice to me!! The P. T. she had gave up on her, said nothing he tried was helping.
Is her pregnancy makeing this both legs now? She is not far from a wheelchair usage. Last night she could not get herself out of the tub, even w/an aid on the tub to grasp. I can not lift her, so she finally got out, and we just cried. The n-surgeon could not find anything in his 2 additional MRIs (no dyes). He recommended to her primary care doctor, when he called him, that he see another Nuero in this area. We went there, and he (#5) said WELL I'M THEONE THATs GONNA FIGURE IT OUT. AFter his EMG/NCV and S.Tap menioned above, he is now sending her to a friend/fellow nuero, who MIGHT konw someone that can get her into mayoclinic sooner than 6 months. She can't have may tests due to the baby, but she will not make it at this rate without being totally crippled. She is barely getting around, with arm crutches. She lost all toe movement on the drop foot (1 year now) side, the leg is smaller, and the left foot is now limited in movement, and toes are barely able to move. CAN the baby be doing something here? DO we need to consult ANOTHER Ortho. or Ortho surgeon?? Will the baby be affected by ths thing too? My daughter thinks she will die from this; her home and car are for sale as she cannot do steps, etc. The thought of moving in w/her parents is bad news, for someone that is very independent. What do we do? Who do we see?
OK First check out a site called 'neuroexam.com' it explains what steps neuros do during exams and diagnosis and why each tests are done.
To clear up one or two points tho: MRI's use dyes for contrast and MRI's are used to see if there is any spinal damage or calcification of nerves resulting in entrapment. Nerve conduction tests do not use dyes and while they can hurt [folks report 50/50 yes a LOT or no problem] they tell a neuro how well your extremity nerves signals are travelling to the brain and back.
There are hundreds of neuro conditions that could be the problem, A nerve biopsy should only be done as a very last resort. In fact many insurance companies will not pay for it or at least recommend that ALL other testing be done. That is the route I went thru everything BUT. I would not have a biopsy if I had to unless it was a 'punch' not 'seural' biopsy.
Be aware that a spinal test will not always test positive the first time, but can at a later date. I don't think docs can positively diagnose GBS without a positive spinal tho. It's good that she got IVIG tho, it could be preventing complications. I'd go for more testing at a good research/teaching hospital. My only concern and one you both should be up-front to docs about relates to how far along she is with the baby.
I hope this helps and I'll keep you on my mind.
Thanks for your help. SHe is now 6 months pregnant. FIFTH NEURO, (thats not counting the Nuero-surgeon) has done the 3rd EMG/NCV, shows nerve damage in both legs now, but not conclusive as to why; and the 2nd Spinal Tap (protein normal; other tests not back yet).
Both Legs just getting weaker; foot drop on right side been there a year. Left leg was tingling all along but didn't seem to get weaker until she got pregnant, we think. She got large quickly, being a very small person. Her tummy hasn't really changed in size over the past month very much. Her weight is in control and normal. Baby yoke sac was deflated at first and they said she was "high risk" but now all appears to be normal.
BOTH LEGS now are so weak, getting worse by the day. By the DAY. She uses arm crutches, is all she can do to climb steps, and walk up a slight incline, or decline. They tell her physical therapy or exercise will do no good, which is stupid advice to me!! The P. T. she had gave up on her, said nothing he tried was helping.
Is her pregnancy makeing this both legs now? She is not far from a wheelchair usage. Last night she could not get herself out of the tub, even w/an aid on the tub to grasp. I can not lift her, so she finally got out, and we just cried. The n-surgeon could not find anything in his 2 additional MRIs (no dyes). He recommended to her primary care doctor, when he called him, that he see another Nuero in this area. We went there, and he (#5) said WELL I'M THEONE THATs GONNA FIGURE IT OUT. AFter his EMG/NCV and S.Tap menioned above, he is now sending her to a friend/fellow nuero, who MIGHT konw someone that can get her into mayoclinic sooner than 6 months. She can't have may tests due to the baby, but she will not make it at this rate without being totally crippled. She is barely getting around, with arm crutches. She lost all toe movement on the drop foot (1 year now) side, the leg is smaller, and the left foot is now limited in movement, and toes are barely able to move. CAN the baby be doing something here? DO we need to consult ANOTHER Ortho. or Ortho surgeon?? Will the baby be affected by ths thing too? My daughter thinks she will die from this; her home and car are for sale as she cannot do steps, etc. The thought of moving in w/her parents is bad news, for someone that is very independent. What do we do? Who do we see?
michigani
12-04-2006, 05:34 PM
Hi joastudio,
It's Mark, the one who's sister contracted vasculitis and went from healthy to quadriplegic in 72 hours. I can't believe the baby had anything to do with this. 400,000 women a day have a baby in this world and I've never heard of this. (Again I'm no doctor so I can't promise I am right).
I wish I could give you advice. All I can do is promise to pray for your daughter, her baby and your family.
Have you tried to contact the Johns Hopkins Vasculitis Center? Or looked further into the Gilliam-Barre syndrome? Of course there's always ALS (Lou Gehrig's) that falls under the jurisdiction of Jerry Lewis' MDA.
You sound desperate and terrified. I wish you the best. My advice may all be shots-in-the-dark but someone out there, me or someone else, might just send you down the right road.
Be blessed,
Mark
It's Mark, the one who's sister contracted vasculitis and went from healthy to quadriplegic in 72 hours. I can't believe the baby had anything to do with this. 400,000 women a day have a baby in this world and I've never heard of this. (Again I'm no doctor so I can't promise I am right).
I wish I could give you advice. All I can do is promise to pray for your daughter, her baby and your family.
Have you tried to contact the Johns Hopkins Vasculitis Center? Or looked further into the Gilliam-Barre syndrome? Of course there's always ALS (Lou Gehrig's) that falls under the jurisdiction of Jerry Lewis' MDA.
You sound desperate and terrified. I wish you the best. My advice may all be shots-in-the-dark but someone out there, me or someone else, might just send you down the right road.
Be blessed,
Mark
dahlek
12-05-2006, 10:15 AM
Jo, you have every right to be concerned...but I've got to ask - have any of these neuros considered IVIG a blood product to slow the progression? I know it's used for many neuropathies and GBS/CIDP, but ALSO for early stage pregnancies when self-abortion is a possibility. I don't know about it's efficacy during later pregnancies, but it's worth a shot to ask. I would guess [and, I'm not a doc] that it'd probably be far safer than prednisone or other such treatments.
Why not clear it with her gyn first? The gyn will probably know of patients who have conditions and pregnant that use it. As well as those who use it in early pregnancy.
Of course the issues of IVIG costs and supply will come into the picture.
If I were beginning I'd do a web search on 'neuropathy+pregnancy' and 'IVIG+pregnancy' and see what you find. Other than breaking out the old 2x4 and swinging in frustration, I'm not sure what else to suggest.
Hope this helps!
Keep us up to date - please!
Why not clear it with her gyn first? The gyn will probably know of patients who have conditions and pregnant that use it. As well as those who use it in early pregnancy.
Of course the issues of IVIG costs and supply will come into the picture.
If I were beginning I'd do a web search on 'neuropathy+pregnancy' and 'IVIG+pregnancy' and see what you find. Other than breaking out the old 2x4 and swinging in frustration, I'm not sure what else to suggest.
Hope this helps!
Keep us up to date - please!
PearlDoves
01-01-2007, 05:35 PM
When I was pregnant, I had horrible sciatic nerve pain and it got to the point that I could hardly walk and had to use both hand rails to crutch myself down the stairs. Also if she has something like Spondylolisthesis, it may be hard to find until after she has the baby. She may just need to be on bed rest until she has the baby, for her safty and the babies because if she falls that could be catostrophic for both of them. Once the baby is born and she has some time to heal from the birth, it might be better to resume testing after that time.
It might be good to start looking into other causes other than neuro alone, such as rheumatism. Might be helpful to go to a Rheumatologist.
It might be good to start looking into other causes other than neuro alone, such as rheumatism. Might be helpful to go to a Rheumatologist.
TheNutt
01-02-2007, 12:52 AM
Have any of the doctors tested her for West Nile?
Look up West Nile Poliomyelitis and see if the symptoms sound like what she is experiencing.
Look up West Nile Poliomyelitis and see if the symptoms sound like what she is experiencing.
joastudio
01-10-2007, 11:34 PM
Mark, Thanks for your note, and particularly for your prayers. Yes I do sound and feel desparate. Keri is due in March. She is now being pushed in a wheelchair, to the elevator at her work, then she uses the arm crutches to go to her test. She fell yesterday, trying to get the bathroom door open. They want her gone; or her supervisor who is also pregnant, does. She doesn't want to deal with her situation, and wants everything wrapped up when she herself, goes out on M. Leave. Keri is leaving in less than 2 weeks; and going on disability. We don't konw if she'll be able to go back ever.
Her neuro (#6 of 8 seen) sent her to Boston, for the Grand Rounds. She was observed by a room of neuros. About half thought it was indeed probably ALS, and the rest tnought there was too much not quite right for it, and suggests testing w/Prednisone, IVIG long term after the baby comes.
We are in limbo now, just waiting, as she grows more crippled. This has not yet effected her arms, but her legs are a little more useless by the day, as her baby grows too. The baby appears to be fine, as for as they can tell.
Thanks for your reply, and all the rest too. Her doctor wants her to have a blood test for the familial ALS, to rule it out, but its $1000 and insurance doesn't want to cover it.
Her neuro (#6 of 8 seen) sent her to Boston, for the Grand Rounds. She was observed by a room of neuros. About half thought it was indeed probably ALS, and the rest tnought there was too much not quite right for it, and suggests testing w/Prednisone, IVIG long term after the baby comes.
We are in limbo now, just waiting, as she grows more crippled. This has not yet effected her arms, but her legs are a little more useless by the day, as her baby grows too. The baby appears to be fine, as for as they can tell.
Thanks for your reply, and all the rest too. Her doctor wants her to have a blood test for the familial ALS, to rule it out, but its $1000 and insurance doesn't want to cover it.
joastudio
03-31-2007, 11:15 AM
My daughter had her baby 3 weeks ago, after a very painful delivery (epi didn't work on the worse side) and cries all the time with she is alone. She can't walk, or even stand on her feet. Her arms are jerky and weaker. She is breast feeding, so they will not try IVIG or Prednisone until after she stops lactation, and she wanted to do it really bad. She will stop soon, just to try something, but since both were tried briefly when it was only drop foot, over a year ago, she is sure it won't do anything but give her migraines as before.
Her neuro hasn't seen her, but they have an appt. This one, will not SAY she has ALS, as did the dude he sent her to, but sent her to BOston where 40 neuros observed her and half said yes to ALS and rest said to many things not right for ALS. STARTED w/pain in her back, Never progressed from drop foot for next 6 months until she got pregnant, She had a flu shot, cruise to Grand Caymans (snorkeling), and used to have a red patch on her drop foot leg thigh, every time she showered. THis points more to a parasite, or visus, but they can't SEE anything on any kind of tests. They can only tests for things they konw to test for, and otherwise, many things show up negative for this fact.
She contacted a homeopathic specilist in FL that cured my nephew of boils after he was stuck in MExico after the hurricane for 2 weeks. He and his wife had boils all over their body for months, and western meds doctors treated it and treated it,a nd they continued. This man, gave them some pills and they had to take them once a day for 60 days, NEVER missing a day, and they had boils up until the end, then after the 60 days they have never had another one.
This man has asked Keri for a picture of her eye, made by a specialist, and he will let her konw what he thinks. He thinks its a parasite eating away at her body.
The baby does not seem to be effected at this point.
We just want our daughter to have her life back. She can't get to the baby to lift it up and her husband or us has to do it. She cries so much from frurstration. Does anyone konw anyting about parasites.
Her neuro hasn't seen her, but they have an appt. This one, will not SAY she has ALS, as did the dude he sent her to, but sent her to BOston where 40 neuros observed her and half said yes to ALS and rest said to many things not right for ALS. STARTED w/pain in her back, Never progressed from drop foot for next 6 months until she got pregnant, She had a flu shot, cruise to Grand Caymans (snorkeling), and used to have a red patch on her drop foot leg thigh, every time she showered. THis points more to a parasite, or visus, but they can't SEE anything on any kind of tests. They can only tests for things they konw to test for, and otherwise, many things show up negative for this fact.
She contacted a homeopathic specilist in FL that cured my nephew of boils after he was stuck in MExico after the hurricane for 2 weeks. He and his wife had boils all over their body for months, and western meds doctors treated it and treated it,a nd they continued. This man, gave them some pills and they had to take them once a day for 60 days, NEVER missing a day, and they had boils up until the end, then after the 60 days they have never had another one.
This man has asked Keri for a picture of her eye, made by a specialist, and he will let her konw what he thinks. He thinks its a parasite eating away at her body.
The baby does not seem to be effected at this point.
We just want our daughter to have her life back. She can't get to the baby to lift it up and her husband or us has to do it. She cries so much from frurstration. Does anyone konw anyting about parasites.
dahlek
03-31-2007, 11:56 AM
As a person who has had IVIG for some years, those headaches were probably either due to how fast a rate the ivig was administered and/or what pre-medications [such as Tylenol and/or Benedryl] were given. Both those factors can make a BIG difference in terms of how well it's all tolerated. Web up IVIG 'brands', pick one and find the 'patient prescribing' info....there is a LOT of info on those info sheets about this issue. And yes, those headaches can be brutal! Worth a try again, with those precautions, I'd think. There's even a magazine published by IVIG manufacturers about the product and it's got lots of resource information... IGLiving.
Don't forget there are over 200 types of neuropathies, so any diagnosis has to include all the testing to EXCLUDE the things such as ALS, MS, MD, MG, Lymes, West Nile and the hundreds of other neuro conditions and diseases. It takes a long time but persistence is always the key here.
I am soo glad for you all that both your daughter and the baby came thu this ordeal. I hope you get a diagnosis soon and that she recovers her life and is free from pain that goes with all she's been thru.
Don't forget there are over 200 types of neuropathies, so any diagnosis has to include all the testing to EXCLUDE the things such as ALS, MS, MD, MG, Lymes, West Nile and the hundreds of other neuro conditions and diseases. It takes a long time but persistence is always the key here.
I am soo glad for you all that both your daughter and the baby came thu this ordeal. I hope you get a diagnosis soon and that she recovers her life and is free from pain that goes with all she's been thru.