Trying to Make Sense Out Of Odd Symptoms

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Trying to Make Sense Out Of Odd Symptoms

Postby coach » Thu Oct 04, 2012 8:44 am

Seems like I have somptoms hat are odd. At one time i HAD A CLEAR THIN FLUID THAT CAME OUT OF MY nOSE. csf? Don't have allergies or a cold. Can't remember when I've had a cold. Lack of appetite. Never get hungry. Seem to have increasing mobolity issues. No cog fog or disabling fatigue. Limited migraines(pressure headaches) Had CCSVI procedure. Improved energy, bladder function (most of time). Severe constipation. Walking never improved and is worse now. Since daughter started with same symptoms Optic neuritis. No further symptoms just progression and detereoration in motor skills.Lower half of body (legs) are useless. Severe burning pain in calf muscles. Sleep on back with legs elevated. Still dream which was one thing I was asked in California. Maybe medical genticist Dr. Clair Francomono in Maryland can help connect the dots. Getting lots of pressure to try drugs. Not sure what to do. Out of options?
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby cheerleader » Fri Oct 05, 2012 7:11 am

coach--
I'm so sorry to hear you haven't been well. Because you mention that possible link to CSF, I wanted you to know that CCSVI Alliance has been working with doctors that are looking at cerebrospinal fluid issues.
CCSVI Alliance announced in August that President Sharon Richardson was invited to observe a session of the current study looking at CSF flow obstruction in neurodegenerative disease, conducted by Dr. Rosa and Dr. Damadian in Latham, NY. As we mentioned at that time, observations from the study look promising. We are anxiously awaiting the resulting data to be published.
In the interim, the Alliance is facilitating the introduction of this new research to medical professionals familiar with the diagnosis and treatment of CCSVI.
Here is more insight into this innovative study, via today's press release from FONAR,

"Dr. Damadian has shown that 8 patients with MS had degenerative changes in their cervical spines which impinged on the spinal canal and limited the pulsatile, to-and-fro flow of cervical CSF over the cardiac cycle, as demonstrated on UPRIGHT® MRI. His hypothesis that increased resistance to outflow of CSF is linked to the etiology of MS has some similarities to Dr. P. Zamboni's hypothesis that MS is due to the impeded outflow of venous blood from the brain due to dural sinus stenoses. In both theories, increased resistance to outflow of either CSF or venous blood would be expected to modify the intracranial pressure wave over the cardiac cycle. While both theories need to be further tested with larger controlled studies, it is intriguing that they seem to invoke similar pathologic changes. Whether these changes are etiologic in all cases of MS remains to be tested."


Here's the press release from FONAR:
http://www.healthcareglobal.com/press_r ... l-2011-rev

I hope this might be of some help for you. Take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby jimmylegs » Fri Oct 05, 2012 7:18 am

hi coach, have you ever had bloodwork done to rule out the common nutritional issues seen in ms patients? nutrient deficits can manifest themselves in highly variable ways from person to person...
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby coach » Sat Oct 06, 2012 9:50 am

No JL. tred to get in drs, rosa and danadian study. full.if interested one can go to WACMA WEBSITE ON WHICh I'VE poSTED AND THEY talk about these sx's. don't think i'm being unreasonable.
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby jimmylegs » Sat Oct 06, 2012 11:18 am

well if you decide to look into nutrition and end up with any questions, feel free to ask :)
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby HappyPoet » Wed Oct 10, 2012 11:06 am

Hi coach,

A nasal CSF leak is considered very rare and most often happens only after violent trauma, such as being in a car accident. Also, there most likely would be symptoms, such as severe headache (worse when upright), nausea, tinnitus, and blurred vision, among others. If in doubt, see your doctor ASAP the next time it happens.

Having said all that, though, MS can definitely cause nasal secretions to increase, sometimes quite markedly. I've had this yucky symptom twice, the second time was not as bad as the first. This happens when the autonomic nervous system (ANS) is irritated or damaged; the ANS is located in the brain stem. The sympathetic nervous system of the ANS inhibits nasal secretions, and the parasympathetic nervous system increases them which means damage to either part of the ANS can increase nasal secretions.

Surprisingly (or maybe not), in my experience, my past neuros and even MS specialists didn't know this is a symptom of MS--shame on them for not having studied enough in med school.

Best of luck.
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby ssmme » Wed Oct 10, 2012 1:29 pm

@Happypoet

I've never heard this before. I have had a chronic clear post nasal drip for as long as I can remember. My mom does, and so did my maternal grandmother when she was alive (btw she lived to 104). I carry tissues with me wherever I go no matter what. It's inevitable - my nose will run. I'm the only one with ms except for a second cousin (my mom's brother's daughter's daughter) . I've been tested for allergies twice in my attempts to find a reason for this condition but had no allergic response to anything. I live in Kentucky where pollen in the spring and ragweed in the fall are off the charts. Molds are bad allergens here as well. Allergies would be preferable to ms in my opinion but I'm not that lucky. Where did you find this information. I'd like to read up on it and take it to my neuro next time I see him.
Marcia
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby Scott1 » Fri Oct 12, 2012 3:43 am

I'd never heard this before either but I had an ongoing issue with the same problem. In particular, I couldn't eat anything cooked without a handkerchief at the ready due to dripping fluid onto the plate. I always suffered from a severe cough, laryngitis and ear aches.
Eventually I found an ENT surgeon who said all my problems were derived from a deviated septum which blocked one nostril completely. As a consequence I was mouth breathing and unfiltered air was drawn across my tonsils leading to infection.I ended up having a septoplasy, then a tonsillectomy then a partial resection of the soft palate when I was forty. The surgeon thought the amount of tissue he had to remove from inside my nose was symptomatic of a bad break but I had never done that. The only thing I could think of was damage at birth as I've been told I was a forceps delivery.
I had a lot of hopeless diagnosis outcomes until the ENT surgeon stuck a light up my nose and he said "simple". He also noted my tonsils were "two bags of pus". I just wish they had been tested for what the infection was.
Eventually the surgery all healed and now I don't drip anymore. It was be interesting to see if an ENT specialist sees the same problem with you.

Regards
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby coach » Fri Oct 12, 2012 7:52 am

since daughter had same CIS i THINK ITS WORTH CHECKing with NS considering a dethering. the difficulty will be convincing one to try. the odd sx's like the occasional N&V out of nowhere. low back pain, pelvis pain, burning in bottom of feet loss of appetite. constipation for which I take stool softener which may contribute to fecal incontinance, bilateral calf muscle pain (burning), urinary issues Realize some sx's are common to ms.Upper body strength is better than lower. dethering is worth a shot.walk upstairs with husbsnd's help.need to look at stair lift or move whichever is cheaper. sorry to be so graphic. EDS is a connective tissue disorder so maybe my filum terminale needs to be released surgery is low risk. May want to google dr. sam banner in dothan alabama. also dr. fraser henderson in maryland. also dr. clair francomono. think I am pursuing a reasonable option based on sx's. may be a dead end. then will regroup. feel a pulling sensation in tailbone. maybe there are those that have had sucess with drugs. not sure that's don't mean to dis those that have tried drugs. just not sure that's the route I want to take. besides the drugs are reccomended for rrms patients. never had rrms. ma be another dead end. worth a shot. just like I took a chance on ccsvi surgery. I'm ok with no guarantees.
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby lyndacarol » Fri Oct 12, 2012 8:48 am

The following article concerns a new condition called Silent Reflux: http://www.doctoroz.com/videos/silent-reflux-epidemic

This three-page article even offers tips for prevention (or solution): http://www.doctoroz.com/videos/3-step-s ... ntion-plan

Here is the first of the videos from the TV program (http://www.doctoroz.com/videos/silent-r ... demic-pt-1) which lists symptoms of silent reflux: Postnasal Drip, Persistent Cough, Hoarseness, Lump in Throat Feeling

Even most physicians are still unaware of this condition; as stated, 40% of the American population may have this – 50 million do not know; this may be the real cause for some "deviated septum" diagnoses.

The description of Silent Reflux sounds very similar to the problems of coach, Marcia, and Scott. Perhaps it is worth your further investigation and discussion with your physician.
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby ssmme » Fri Oct 12, 2012 9:34 am

@Lyndacarol

The only symptom from this reflux quiz that I score above a 0 is the postnasal drip of which I score a 5. I don't think silent reflux is what I have. No cough, no hoarseness, nothing but a "puppy dog" nose.
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby Scott1 » Fri Oct 12, 2012 12:46 pm

Hi Coach,

I think, at a minimum, you need to follow Jimmy Legs suggestion. Like peeling an onion, you need to eliminate the the simpler possibilities such as infectious agents or unusual readings in blood examinations. I presume you have had scans for signs of structural problems with your spine. Have you done all these things yet? Did they note something?
It doesn't sound like your problem is MS but obviously something is not right and I think you need a very structured plan to deal with this.

Regards
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby bartman » Fri Oct 12, 2012 1:32 pm

anyone diagnosed with MS, and then discovers an unusual infection should always consider Lyme Disease + coinfections Bartonella and Babesia. Educate yourself about the controversy of Lyme. These infections mimic MS and the doctors won't diagnose Lyme due to fear of the medical boards. Testing for these infections are notoriously inaccurate and almost impossible to attain a positive result.

**My cousin was misdiagnosed with MS for 13 years and then discovered these infections and has gotten much better with antibiotic treatment.
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Re: Trying to Make Sense Out Of Odd Symptoms

Postby HappyPoet » Sat Oct 13, 2012 9:13 am

Re nasal secretions: My current MS specialist told me that MS can definitely cause increased nasal secretions/mucus; he didn't give any links, but here are some I found to get you started:

http://garyfisk.com/anim/autonomicns.swf (animation with a runny nose)
http://www.sympatheticnervoussystem.net/ (see parasympathetic section)
http://www.medschool.lsuhsc.edu/Otorhin ... icle2.aspx (see 1st paragraph of pathology section)
http://www.hopkinsmedicine.org/sinus/si ... leaks.html (info on csf leaks)
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