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Old 12-29-2008, 10:15 PM   #1
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sarcoidosis and leg paralysis

sarcoidosis and leg paralysis. my mother has inflammed tissue around her spine causing left leg numbness and limited ability to walk. she also is being diagnosed for sarcoidosis. i read that the prognosis for transverse myelitis(spine inflamation) isnt good. is it better if caused by sarcoidosis?

 
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Old 12-30-2008, 08:00 AM   #2
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Re: sarcoidosis and leg paralysis

Has your mother been diagnosed for sure? Or is she still running the gauntlet of tests? Sarcoidosis is a pulmonary disease that will, untreated, clear up in 2-3 years by 60-80% of patients. I do not see how it would cause spinal inflammation.

I go to KU Medical Center for my neurological care for my MS.

You need to ask your mother's doctor about her condition and treatment after getting a diagnosis. If her condition is curable, then that is the best for which you can hope. If spinal inflammation is the cause of her symptom, then her doctor will have to determine the cause of the inflammation. The sarcoidosis, if she has it, is sometimes treated with steroids, but the government has questioned the actual effectiveness of steroids for sarcoidosis.

For sarcoidosis, the Cleveland Clinic might be worth contacting if you can not locate a good lung specialist there in KCMO.

 
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Old 01-01-2009, 11:10 PM   #3
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Re: sarcoidosis and leg paralysis

Pubmed has lots of data showing that minocycline is highly effective against sarcoidosis.

 
Old 02-07-2009, 06:56 PM   #4
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Thumbs up Re: sarcoidosis and leg paralysis

On feb12,2001 I gave birth to a beautiful 6lbs 4ozs and 191/2ins baby girl.
When she was about 6mths old I started having symptoms of what I thought was the start of a bad cold.
After about a week it got worse to the point I was passing out at work(I worked at JC Penny).
I didn't have health insurance at the time and my parents where so worried they took me to doctors care and paid out of pocket for many visits.
The first visit xrays were taken. The xrays showed what looked like phamonia(right lung was full,left lung was 3/4 full). I was treated for phumonia for eight months with eight or more antibiotics with no results.
I was then sent to my first pulmonolgist(sp sucks sorry). I was under his care for about two and a half years. He treated me with 180mgs of prednisone daily. My mother and I kept asking what I had. He kept saying it didn't matter treatment is the same for all pulmonary diseases.
I then went to another pulmonary doctor for a second opinion,he said the same.
I wanted a third opinion due to harsh side effects from long term,high doses of prednisone(3 different kidney stone removals and GOD only knows how many I past).
Third times a charm. After only two visits he had me tappering off prednisone,on a nebulizer 4 times daily,and a spiral CT done).
Within two hours of the spiral CT appointment he had me back in his office.
The results were chararistics of pulmonary fibrosis,emphzema,and sarcoidosis.
When I was still under the care of doctors care they ran a blood test looking for markers of sarcoidosis which came back negative.
Within a week after the spiral CT he had me in the office of a therasic surgeon.
On Feb15,2004 I had a orthoscopic tripel lung biopsy. On Feb16,2004 it was confirmed,and I was diagnosed with sarcoidosis. After what was only supposed to be two days in the hospital, but ended up being 10 days(woke up with a chest tube it was taken out the next day,one hour after removal of first chest tube the second was put in).
The second chest tube was only put in due to my right lung not sealing like it was suppose to.
After diagnosis I was sent to the Medical University of South Carolina(I live in Charleston,S.C.) to be under the care of world renown sarcoidosis specialist Dr. Mark A. Judson.
I then found out that the sarcoidosis has reeked havoc on my body.
I have sarcoidosis every were but my heart,lungs,brain,and central nervous system.
I have several doctors that care for some other organs that sarcoidosis has effected.
The reason I have other organ doctors is because even though Dr. Hudson is a specialist I need doctors that specialise I those certain organs.
As of Dec.2008 my lungs(only have 52% lung function) are officially in remission.
The other organs can't be tracked to know if they are in remission.
Unfortnately I have to have a MRI every one and a half-two years due to showing symptoms of sarcoidosis of the central nervous system(horrible headaches,not migraines, that last for a minimum of a week to as long as a month accompanied by numbness of the hands,unable to grasp cups,door handles,ect,some times with drupping of one side of the face).
Depending on the type of sarcoidosis you have depends on the symptoms.
Acute patience : most have no clue they have sarcoidosis until a x-ray is taken for suspicions of other illnesses like phumonia.
If diagnosed with acute sarcoidosis 80% of patience will go into remission without treatment.
If you have chronic sarcoidosis(like I do,stage3) only 20% of patience go into remission without treatment.
The remaining 80% of patience have to be treated with prednisone or stronger starionds like methotrexate or other chemotherapy drugs.
About 60% of patience with chronic sarcoidosis in remission the sarcoidosis will become active again. When the sarcoidosis becomes active again it usually is worse then the initial onset of activity.
You should always keep your appointments with your doctor.
My sarcoidosis doctor told me he has had several patience go into remission stop keeping their appointments and when it becomes active again,and finally see him again,it has effected their lungs,kidneys,and liver to the point that they become terminal or need lung,kidney,or liver transplants.
Sarcoidosis can be a very bad disease and hard to handle, depending on the severity of the damage and organs affected.
If anyone needs more info on sarcoidosis feel free to e-mail me or private message me.


Hope my story helps anyone that has questions about how sarcoidosis can effect not just your body but your life as well.
Good luck to all that have been diagnosed with any type of sarcoidosis.

Last edited by moderator2; 02-08-2009 at 08:53 AM. Reason: posted contact info - please read the posting rules

 
Old 02-12-2009, 06:07 PM   #5
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Re: sarcoidosis and leg paralysis

Well kind of good news. yes my mother was still running the gauntlet of test: biopsies (4) and 2 lumbars and numerous mri's. Finally, the VA sent her to KU for a biopsy and it has been confirmed nuerological sarcoidosis. She will start predinisone soon. We're just hoping she will get her leg mobilty back. She can move them but theyre heavy and walking is almost impossible.

thanx for your reply. it was helpful

 
Old 02-01-2010, 03:09 AM   #6
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Re: sarcoidosis and leg paralysis

Sarcoidosis is not ''just a pulmonary disease'' it can affect any organ and any tissue.
I have known two or three people who ended up with neurosarcoidosis and confined to a wheel chair. It sounds to me as if your mum may have neurosarcoidosis.

The notion that sarcoid clears up in two years is also a fallacy. It may, but in the post TB screening age, it is picked up when the disease is already chronic. Chronic sarcoid has an insidious onset. Acute sarcoid has much more pronounced symptoms such erythema nodosum, flu like constitutional changes, fever and severe arthritic pain. This is the type that clears up within two years to six months. People with the chronic form get less pronounced symptoms over a lengthier timeframe which are often dismissed as viruses or other inconsquential things for up to five years pre diagnosis.

Pris

 
Old 02-01-2010, 10:14 AM   #7
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Re: sarcoidosis and leg paralysis

Hi,

I had Transverse Myelitis in April 2009, I was paralysed from the waist down with bladder and bowel issues too. I recovered slowly over a three month period and now only have numbness in my right foot. The Neuro said that will probably not recover now. Any symptoms usually recover fully in the immediate 6 months, after that it is unlikely but not impossible that they will ever recover.

Last edited by UK SUSIE; 02-01-2010 at 10:15 AM.

 
Old 01-20-2011, 06:49 PM   #8
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Re: sarcoidosis and leg paralysis

Hi, I have a tentative diagnosis of NeuroSarcoidosis/MS - MS has pretty much been ruled out. I started with what the docs thought was a tumor on my spine. Not..but the compression caused loss of sensation in my lower extremities. Can feel a pin *****, getting hurt, hot or cold, etc. This may never change. I was put on steroids immediately which shrunk the mass (granulomas) and I was doing pretty good. Went to MUSC, Charleston, Dr. Patel NS who stated they needed to look for other things. lst was transverse mylitis, then possible MS, and then Neurosarcoidosis and now I am back to transverse mylitis. Have also gone to MAYO clinic in Jacksonvil, FL. Getting great care but I am one of the rare birds. Your mom may be too. My health issues are totally limited to my spinal column. I would never agree to a spinal biopsy, so they could not get a definitive diagnosis. To risky. I do not have problems anywhere else. Docs are still working on getting my immune system back to not killing me. I am going to start IVIG infusions soon. Have done Remicade, Imuran, but had reactions with both. I will never be totally cured, but if I can function to a reasonable level, I will be grateful. Have read great reviews on IVIG from other sard patients. Tell your mom to hang in there. I would definitely suggest MAYO Clinic. Loved the doc there and she will work with my Neuro at MUSC to try and get things better. Always keep a good eye on your health. I have a great family practice doctor who is wonderful. He started the first MRI with my crazy symptoms and I have the specialist send copies of all my reports and labs so he knows what is going on with me. He is able to take care of many things. Unfortunately I have been on steroids too long, but when taken off, I crash. He stays on top of all the problems the steroids has caused. Just learned I have osteoporosis (thanks to steroids) and a pelvic stress fracture. I call him for every little thing that pops up and he makes sure if I need care , it comes from the right doctor.
God Bless

Last edited by Kandyd; 01-20-2011 at 06:56 PM.

 
Old 07-21-2011, 08:29 AM   #9
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Re: sarcoidosis and leg paralysis

can you tell me a test that can be performed to test for sarcodosis. I had x ray at er they said it was normal but i have symptoms of sarcodosis.

 
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