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magistramarla
07-16-2011, 09:12 PM
Hello to all my Lupie family,
Get ready to read a big one!
I think that I have found myself a gem of a physical therapist. I did some research on the net, and found a PT office that has someone who has studied and specializes in patients with spasticity.

I’ve been there twice now, and Bonnie is everything that I hoped she would be. She started by taking a complete history and doing a thorough neurological exam. She did the test in which I close my eyes and she touched my legs with either a soft brush or a pin. I could not tell the difference on the front of my legs or my toes. I could in some parts of the backs of my legs. She then showed me a chart showing which parts of the spine enervate which areas of the legs. My problem is with L4 and L5. Disc problems or spinal damage have already been ruled out, so it points to neurological problems.

I told her about my otolaryngologist suggesting spastic paraplegia, and she seemed to think that he’s onto something. She also didn’t seem very impressed at the way I was treated by my last neuro – the one who said that there is nothing wrong with my muscles and if I was bothered when driving, I should just pay more attention to the speedometer. She suggested a new, young neuro in town who has impressed several local PTs.

• She’s working on stretching my spastic muscles and doing some neurological re-training.
• She recommended a PT office that specializes in neuro issues at some point
• She recommended a PT office that specializes in balance issues at some point
• She also recommended a PT office that specializes in neurological bladder issues

When I told her about how I tend to “leak” when I stand up, and how a two hour grocery-shopping trip includes 4 or 5 trips to the restroom, she said that it sounds like a neuro issue. My rheumy had dismissed it, saying that it was just my age and being menopausal.

I’ve done some research that I want to share with you, as I think that some like Terry and BonusMom, as well as others might find it quite interesting.

This is a paragraph from Neurological Manifestations of Sjogren’s Syndrome at http://www.sjogrensworld.org/mandel.htm

Central nervous system involvement can include disorders involving the brain (focal and nonfocal) and the spinal cord. Those focal deficit disorders in the brain can include motor and sensory loss with hemiparesis, aphasia, dysarthria, seizures, movement disorders, and cerebellar syndrome. Nonfocal diffuse disorders can be subacute or acute and can include encephalopathy, aseptic meningitis, cognitive function, dementia, or psychiatric abnormalities. Spinal cord disorders can include transverse myelitis, chronic progressive myelitis, Brown-Séquard syndrome, neurogenic bladder, and lower motor neuron disease.

I googled lower motor neuron disease and was led to this, among many other sites: http://www.ninds.nih.gov/disorders/motor_neuron_diseases/detail_motor_neuron_diseases.htm

The motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing, and swallowing. Normally, messages from nerve cells in the brain (called upper motor neurons) are transmitted to nerve cells in the brain stem and spinal cord (called lower motor neurons) and from them to particular muscles. Upper motor neurons direct the lower motor neurons to produce movements such as walking or chewing. Lower motor neurons control movement in the arms, legs, chest, face, throat, and tongue.
When there are disruptions in these signals, the muscles do not work properly; the result can be gradual weakening, wasting away, and uncontrollable twitching (called fasciculations). When upper motor neurons are affected, the manifestations include spasticity or stiffness of limb muscles and over-activity of tendon reflexes such as knee and ankle jerks. Eventually, the ability to control voluntary movement can be lost. MNDs may be inherited or acquired. (Hereditary Spastic Paraplegia is one of these)

When I googled neurogenic bladder, I found this:

Definition of Neurogenic Bladder
This is a dysfunction of the urinary bladder caused by a problem of the nervous system. Types of neurogenic bladder are spastic bladder, reflex bladder, and flaccid bladder. It is also called neuropathic bladder.

Description of Neurogenic Bladder
Neurogenic bladder is impaired bladder function resulting from damage to the nerves that govern the urinary tract. Various nerves converge in the area of the bladder and serve to control the muscles of the urinary tract, which includes the sphincter muscles that normally form a tight ring around the urethra to hold urine back until it is voluntarily released.
A variety of factors can damage these nerves and cause urinary incontinence. In some cases, spontaneous nerve impulses to the bladder trigger spastic unexpected bladder contractions, resulting in accidental voiding of sometimes large amounts of urine.

So, here’s proof that all of these problems CAN stem from Sjogren’s Syndrome!
And to think, my rheumy says I read too much, and the neuro said that “Sjogren’s is ONLY dry eye and dry mouth and is easily controlled”. HAH!
Hope this helps someone else.
Hugs, Marla

tgal
07-16-2011, 09:37 PM
WONDERFUL information Marla! Correct me if I am wrong but this kind of goes back to the way of thinking that, once diagnosed with an AI disease they can basically be treated the same. Most of the things listed about can come about with CNS, ANS or PNS Lupus as well. So is it really the disease that is causing it that matters or finding someone to treat the symptoms?

This has always confused me because so many of my issues are neurological and even more now that I have read your lists!

magistramarla
07-16-2011, 09:48 PM
Mari,
I agree. I'm tired of trying to convince those docs that it all comes from the AI issues. I wish that they would just admit it, stop trying to find "other" causes, and treat my symptoms already! My lovely young PT has the right idea. She wants me to have a "team" of PTs and docs treating the symptoms.
She's smarter than the rheumy.
Hugs,
Marla

lovedbyHim
07-17-2011, 02:03 AM
Marla, what incredible info and productive visit! You must be thrilled!

magistramarla
07-20-2011, 02:19 PM
I went to the PT twice last week. On Friday, we were doing some exercises to help me with turning over in bed. I usually have to sit up to turn from one side to the other.
It was fairly easy on the nice firm platform there at the office. That night, I tried the same technique in bed on that fraking tempurpedic thing that Jeff loves so much.
On Saturday, my lower back felt sore, and by that night it was in a full-blown spasm. I've been attached to my heating pad ever since.
When I showed up at the PT appointment on Monday, Bonnie did an incredible manipulation that helped a lot, and got me to do some very gentle exercises.
I've felt a bit better each day since. I'm on my way to my next appointment in a few minutes. I hope I get another one of those great massages!
Hugs,
Marla

Peridot20_Gem
07-20-2011, 04:53 PM
Marla "YOUR A STAR MATE"

I saw the Gyno after my operation and she said start the tablets once you've healed from your operation but she believed it was Lupus causing the leakage...so i started them last week and they're surposed to help muscle contractions to the bladder and stop leakage, i was hardly weeing and i was losing more urine i've stopped them they was doing totally opposite with me than what they should have been doing.

I'll add below what she put me on and what they're surposed to do as you asked me about them to see how they worked...a right load of rubbish and all that info you've typed as just been filed and ready to be printed off, someones got to get their finger out now and help one way or another because i'm not being rude Gentlemen of the site but i had the operation to help stop me bleeding bad and at 42 it's not pleasent going about daily wearing liners through this trouble, alot of we lady Lupus member's have to suffer.

Loads of Hugs to you marla and i so do appreciate it so much.

Terry xxxxxxxxx

Peridot20_Gem
07-20-2011, 05:03 PM
Oxybutynin hydrochloride

Ditropan
Generic Name: Oxybutynin hydrochloride
Product Name: Ditropan

•Indication of Ditropan
•Action of Ditropan
•Dose advice of Ditropan
•Schedule of Ditropan
•Common side effects of Ditropan
•Uncommon side effects of Ditropan
•Reference
Indication of Ditropan:
Ditropan is the brand name for a drug called oxybutynin chloride. This is a smooth muscle relaxant drug mainly used to relieve bladder muscle spasm where other conservative measures have already failed. Ditropan can be used to treat a number of bladder instability disorders associated with abnormal nerve impulses to the bladder. In these cases, Ditropan reduces bladder activity and relieves symptoms of urgency, frequency, dysuria and urinary incontinence. Ditropan may also be used to treat incontinence in children older than 5 years. Note that Ditropan helps control your symptoms but does not cure your condition. Thus you will need to take it every day for a specified period of time. Note that Ditropan may have been prescribed to you for a reason other than those listed above. If you have any queries regarding why Ditropan has been prescribed, discuss them with your doctor. Furthermore, not all patients with the above conditions should be treated with Ditropan. You should discuss with your doctor whether Ditropan is suited for you and your particular circumstances.
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Action of Ditropan:
The active component of Ditropan called oxybutynin chloride, relaxes smooth muscles in the body. It does this by a direct means and by inhibiting effects of a compound called acetylcholine. In particular, Ditropan relaxes bladder smooth muscle (detrusor muscle) in patients with involuntary contractions. This delays the initial desire and the urge to urinate.
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Dose advice of Ditropan:
Do not take Ditropan if you:
•Are allergic to Ditropan or any of the other inactive ingredients of the tablets.
•Have acute angle closure glaucoma or problems with the pressure in your eyes, bowel obstruction, intestinal problems (including colitis), myaesthenia gravis (a muscle disorder), urinary tract blockage or severe bleeding.
•Are pregnant or breastfeeding as Ditropan may have unwanted effects on your baby.
Before taking Ditropan you should tell your doctor:
1.If you are allergic to any medications, foods or dyes- Ditropan should not be used if you are allergic to this type of medication.
2.If you are pregnant or intend on becoming pregnant- Research into the use of Ditropan during pregnancy is currently limited and safety data is only based on a few animal studies. Your doctor will discuss the risks and benefits of using this medication during pregnancy.
3.If you have any other medical conditions- In particular tell your doctor if you have any liver, kidney or heart problems, high blood pressure, an enlarged prostate, eye problems, intestinal or bowel problems, myaesthenia gravis, urinary tract obstruction or hiatus hernia as Ditropan may aggravate some of these conditions.
4.Any other medications you are taking (including those bought from supermarkets or the chemist)- Ditropan can interact with some medications used to treat depression, psychotic disorders, Parkinson's disease and heart arrhythmias which may affect how one or both drugs work. Your doctor will discuss which other medications are safe to use concurrently with Ditropan.
Dose administration:Ditropan comes as round light blue tablets containing 5mg of the active component oxybutinin hydrochloride. They are supplied in bottles of 100 tablets. Ditropan tablets are intended to be swallowed whole with a glass of water. You should always take Ditropan as prescribed by your doctor. For adults, the usual dose is one tablet 2-3 times per day (up to a maximum of four times per day). Elderly patients may require a lower dose. Children older than five years usually have one tablet two times per day. During your treatment your doctor will monitor your response and development of any side effects. They may perform regular cystometry which is a series of tests measuring your bladder function. Whilst taking Ditropan you should be careful driving and operating machinery as Ditropan can cause dizziness, drowsiness and affect your vision. Alcohol and other sedative drugs may also worsen these side effects. In addition, be careful taking Ditropan in very hot environments as it can impair your ability to sweat and hence cause overheating.
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Schedule of Ditropan:
S4 (prescription required).
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Common side effects of Ditropan:
Ditropan helps most people with bladder problems but like all medications may have unwanted side effects in some people. The majority of these side effects are mild and do not require specific treatment; however some patients can have more serious side effects. In general the larger dose used, the more likely you are to experience side effects. If you experience any symptoms you may think are caused by taking Ditropan be sure to discuss them with your doctor. The most commonly reported side effects of Ditropan occurring in at least 5% of patients treated with the drug include:
•Abdominal pain.
•Headache.
•Dry mouth.
•Nausea.Constipation.
•Dyspepsia (a feeling of indigestion or discomfort in the upper part of the stomach). Diarrhoea.
•Dizziness.
•Drowsiness.
•Blurred vision.
•Difficulty urinating.
•Burning or discomfort urinating which may be a sign of urinary tract infection.
•Facial flushing (especially in children).

www.virtualmedicalcentre.com/drugs.asp?drugid=2078... - Australia

Peridot20_Gem
07-20-2011, 05:10 PM
Marla, what incredible info and productive visit! You must be thrilled!

Tammy...if marla was by me i'd give her a right smacker on the chops (kiss) as what she's found out is brilliant for loads of us, who go through this daily. xxx

magistramarla
07-20-2011, 08:23 PM
Terry,
Thanks for all the compliments, mate - I'm just doing the same thing that you do - sharing what I learn.
Also, thanks for the info on the Ditropan. I've read about it on some of those sites that I found. Here's the thing for folks like you and me - did you see that dry mouth can be one of the side effects? We have Sjogren's, so that rules it out for us. I used to have a PCP back in Texas who put me on one of those meds for urinary urgency that we see so many ads for on the telly here in the US. I was also on another med to "dry out" the inner ears for the Meniere's.

When I finally found my great rheumy there, she practically screamed about those two meds. She said that those are the last things that someone with SJS should be taking.
It seems to me that we desperately need to have a good doc like her to coordinate all of our meds, or to be lucky enough to have all of our docs actually talking to each other before prescribing random meds. Of course, that would be in a perfect world, wouldn't it?
And I want that smack when Jeff and I get to visit England! I'll hold you to it!
Hugs to you,
Marla

Peridot20_Gem
07-21-2011, 02:41 AM
Marla,

I shall be pointing out these issues as soft as it sounds not with a gyno again when i have to see them but my Dermo he knows that much, he'll most likely point me in the right direction.
Refering that drug and dry mouth could'nt tell you marla sorry because i suffer with it bad now already besides my gullet being dry.
There's alot more to sjogren's besides the bad eye issue and dry mouth.

When you do come to England just pic a nice spot...my dad used to love the yorkshire dales being a long distant lorry driver.lol

Hugs Terry xxx

magistramarla
07-21-2011, 09:23 PM
Terry,
Being a retired Latin teacher, I want to see those places that I used to teach about - Roman Britain.
The Palace at Fishbourne where King Cogidubnus lived when the Romans landed. Bath (and Stonehenge, which is nearby). The statue of Boudica in London, and the place where she nearly beat the stuffing out of a Roman Legion. Of course, I would like to see Hadrian's Wall and some of the outstanding archaeological digs that are going on near it.
See, I'm a Roman History geek. Have you ever watched the Time Team on the BBC? We used to get it on BBCAmerica, and I loved it - recorded it and showed it to my students.
I don't know if any of those historical sites are near you, but I would love to meet you, too.
Hugs,
Marla

magistramarla
07-21-2011, 09:34 PM
I went to PT again yesterday, and did a few gentle exercises again. Today, I've suffered on the couch all day with my back killing me.
Jeff has talked me into taking an Aleve and a Baclofen before I go to sleep tonight. I hate Baclofen - I know that I will feel like I have a doozy of a hangover tomorrow.
Wish me luck and good night.
Hugs,
Marla

steve.b
07-21-2011, 09:49 PM
I don't know if any of those historical sites are near you, but I would love to meet you, too.

does this mean that terry is a historical site also??????????

magistramarla
07-22-2011, 03:18 PM
Steve,
LOL - She's a historical part of this site - right?
Hugs,
Marla

steve.b
07-22-2011, 11:03 PM
as long as it is historical and not hysterical.