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looking for help.

Postby trebletree4u » Tue Oct 12, 2010 3:57 pm

i'm new here and hoping to find some answers.
a year ago i had an attack in my central nervous system. i went numb from my nipples to my toes. i was hospitalized for 5 days on a solumedrol drip. 1000mg over an hour.
the numbness cleared, except the bottom of my spine. its never quit hurting.
i had another attack in 3/10, and was immediately referred to the cleveland clinic mellen center for m.s.
since then m.s. has been ruled out. i think my neurologist thinks i'm crazy. he made me be assessed by a psychologist.
i keep telling them my pain is in my hips and legs. mainly the left side. it does radiate to the right when it flairs up. pain is constant, and spikes up to as high as 9/10.
my question for the forum. does anyone have pain in both the pudendal and sciatic nerves at the same time?
i'm being shuffled from one specialist to another right now. it's more than frustrating.
also, cold seems to trigger my flair ups. any suggestions are moe than welcome

thank you
trebletree4u
 
Posts: 4
Joined: Thu Oct 07, 2010 6:11 pm

Re: looking for help.

Postby HerMajesty » Tue Oct 12, 2010 6:53 pm

MANY people have pain in the sciatic and pudendal nerves at the same time. The reason is that both nerves run from the base of the spine through the pelvis, and if you have Pelvic Floor Dysfunction (PFD), which is a state of spastic, hypertonic (chronically tight) pelvic floor muscles, both nerves can be impinged upon or entrapped within the pelvic structures. Alternately, both nerves originate towards the base of the spine and can be impacted by issues with the nerve roots in that area.
I am assuming (or at least hoping, doctors can be idiots) that you have had an MRI of the lumbar, sacral, and pelvic regions? If this is negative for pathology, you can still be diagnosed and treated for pelvic floor dysfunction by a Pelvic Floor PT. They do hands-ona assessment which gives data you will not get from the standard imaging tests. One PT assessment will most likely leave you greatly relieved that you are not crazy after all.
Do not mess with these Docs. Go straight to the "Find a PT" page on this site, and beg borrow or steal to get a referral to one near you. Then look on the "Find a Doctor" area of this site and see if there happens to be one near you - the guys listed are the big names in pudendal and are smart enough to know you are not nuts. However, they are scattered around the country and unless you happen to live near one, it is best to get local care 1st and then make a pilgrimage to one of the Pudendal expert Docs if you find it to be necessary. Local care you need: pelvic floor PT, and PAIN CLINIC, which are the Docs that understand chronic conditions instead of treating you like you are crazy. Get a list from your insurance, of pain specialists near you. then check with the pelvic floor PT to see who (s)he knows and likes, or if no luck that way, just call around and ask if that clinic has experience with pelvic pain patients. My neurologist. when I had one, also treated me like a crazy piece of dirt, but I convinced him to give me a PT referral and never looked back. the PT referred me to a pain clinic she liked, and my pain clinic guy (actually a PA, not a doc), has coordinated my care ever since: kept giving me PT referrals when I needed them, ordered the correct diagnostic tests, got me on an ideal med regimen, etc. Once you get in with at least ONE practitioner that understands pelvic pain syndromes, you will find more and get out of the frustrating situation you are in right now.
I wish you the best with this.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: looking for help.

Postby HerMajesty » Tue Oct 12, 2010 8:16 pm

I also on reflection feel I should mention regarding your weird symptoms:
When I 1st posted on the old, now defunct pudendal board, prior to diagnosis, everyone was kind of stumped because of the systemic nature of my symptoms, kind of like with you. I had not only pudendal, but also, working from the head on down: a history of severe migraines since teen years, a spot on my brain MRI, mild memory loss, neuropathy in my fingers, pudendal neuropathy, neurogenic bladder (new) and a long history of interstitial cystitis, and neuropathy in my toes with reduced foot / ankle sensation and reflexes.
My problem turned out to be pelvic joint dysfunction - search terms would also be "sacroiliac joint dysfunction", "SIJD". The kinetic compensation for having your pelvic joints out of place, misaligns you from head to toe. So, I actually had joint abnormalities impinging on muscles and nerves literally from my jaw to my ankles; however all other joint dysfunction released spontaneously upon correction of my pelvis. This is because the pelvis is the kinetic center of the body. So anyhow, the compensations in my cervical (neck) vertebrae was causing migraines and neuropathy in the fingers, and the spot on the brain and associated memory loss was a small clot which is apparently common with migraine syndrome; the pudendal, toes, and bladder issues were all secondary to pelvic malalignment - the toes being in fact related to a branch of the sciatic nerve.
I was very malaligned to be that symptomatic, and if you are too, any pelvic floor PT should be able to pick that up very quickly. You might be able to have a spouse or friend observe it for you, even prior to a PT visit. Have them watch you walk back and forth down the hall and really LOOK. a shoulder or hip might be very notably higher than the other, big difference in arm swing between right and left arm, or something else that just looks very "off". Also lie down against a straight line and have somebody look at your heels to see if your leg length is equal.
It is possible to have a symmetrical pelvic joint dysfunction (such as the sacrum jammed backwards against the two ilia - this will lock up the entire pelvis without causing any inequality between right and left), and these are harder to find - many PT's cannot identify them. You would probably have a notably strange posture on walking but no assymetry. So if there is no assymetry, you cannot rule out joint dysfunction - however if there IS obvious assymetry - Bingo! You have a good handle on your problem right there.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: looking for help.

Postby Judith » Wed Oct 13, 2010 8:23 am

I'd like to add a little to this interesting and very thorough discussion. I've been trying to sort out some new, and not so new symptoms. I won't go into all the details, but suffice it to say I had a few months in the beginning of very centralized pain - that is another term your doctors should understand. Certain people and injuries are susceptible to having pain centralize and not follow the elegant text book nerve patterns that the books demonstrate. Also, certain pain conditions, over time, can develop into new ones, like fibromyalgia. I wanted to share this recent article with you. Keep in mind if you can, the quality of your pain and how it changes. After four years, some of mine is exactly the same, some is gone, and some has definitely changed completely.

Here is an excerpt that I wanted to share. I'd encourage you to read about the concept of how pain centralizes and how pain refers to other areas of the body. You ARE NOT CRAZY. the doctors, unfortunately can be LAZY and not think outside that teeny tiny box of theirs.


Fibromyalgia May Begin as Bladder Pain
Painful bladder syndromes (including interstitial cystitis) tend to frequently occur with other regional pains, such as irritable bowel syndrome, low back pain, and headaches. But there is more to this clustering of painful conditions. A recent study shows that fibromyalgia is also more commonly found in patients with bladder pain when compared to people in the general population.*

A large portion of people with painful bladder disorders appear to have more severe symptoms and respond less favorably to traditional treatments that focus on the bladder. The research team, led by urologist J. Curtis Nickel, M.D., of Queen’s University in Canada, speculated that the bladder patients who were resistant to therapies might have other painful conditions clouding the picture.

The prevalence of various pain disorders in 207 “cases” diagnosed with bladder syndromes was determined by questionnaires. In addition, the questionnaires asked about the severity of symptoms, such as fibromyalgia-like pains, chronic fatigue, depression, stress, anxiety, and coping skills. The same set of questionnaires was also completed by 117 “controls” — people in the same age range that were randomly recruited from the general population.

“There was a striking difference in prevalence of irritable bowel between cases and controls (38.6% vs 5.2%, respectively), and fibromyalgia (17.7% vs 2.6%),” state the study authors. “The greatest difference between cases and controls was observed for vulvodynia (17% vs 0.9%).” Migraines, tension headaches, and low back pain were close to three time more prevalent in the cases compared to the controls.

What about the symptom severity scores for the bladder pain only cases compared to those with bladder and multiple other painful conditions? Not surprisingly, physical function impairments, pain, stress, depression, and sexual dysfunction were all significantly worse in the patients with multiple pains.

The most alarming finding of this study relates to the duration of bladder symptoms. As the duration increased, there was a much greater likelihood that the patient developed other painful conditions in body regions unrelated to the bladder.

Based on the time line and increasing severity of symptoms, the authors suggest a “progression from an organ specific (bladder) to a regional (irritable bowel) and finally to a systemic (fibromyalgia) pain syndrome.” More studies are needed to determine if fibromyalgia might start out as a regional bladder pain syndrome.

Along with this expansion from a local to systemic disorder, the authors noted an increase in symptom severity and a “deterioration of cognitive and psychosocial parameters.” Once more systemic symptoms appear, treatments targeting only the bladder are likely to be less effective, which could help explain the varying effectiveness of the therapies.

* Nickel JC, et al. J Urology 184:1358-1363, 2010.
Judith
 
Posts: 30
Joined: Sun Sep 19, 2010 5:34 am

Re: looking for help.

Postby HerMajesty » Wed Oct 13, 2010 1:51 pm

Hi Judith,

Here is an article by some folks who seem to "get it" a little more:

http://www.jneurosci.org/cgi/content/full/18/23/10016

I tried to explain why I think the folks who wrote the other article have it not wrong, but a little backwards; but realized I was getting way late to get in the shower, and as Wednesday is my crazy day not sure when I'll be back again...but if you get a chance, tell me what light you think this article sheds on the 1st one.

Have a good Wednesday!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: looking for help.

Postby HerMajesty » Wed Oct 13, 2010 2:21 pm

Ha!
Judith, this is why I should never attempt to think until hot water has been poured over my head...while in the shower, I figured out how to express it succinctly in 1 sentence:

"The systemic disease process was already well underway. The bladder was merely its 1st manifestation".

It might interest you to know BTW, that I discovered shortly after the concept of the trigger point was introduced to me, that I have 16 of the "18 tender points" of fibromyalgia - but am not a candidate for such a diagnosis as I never had any musculoskeletal pain or fatigue. Looking at disorders in terms of their symptoms is what gets some of these Docs in trouble - symptoms can be dramatically different in two individuals with identical physical presentations.

Now to dry my hair, maybe I will get even smarter :lol:
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: looking for help.

Postby calluna » Thu Oct 14, 2010 10:18 pm

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Last edited by calluna on Wed Nov 04, 2015 1:24 am, edited 5 times in total.
calluna
 
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Joined: Mon Sep 27, 2010 11:57 pm

Re: looking for help.

Postby HerMajesty » Thu Oct 14, 2010 11:11 pm

calluna, what kind of techniques are you referring to, or what mode of therapy? Cognitive-Behavioral? Relaxation?
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: looking for help.

Postby trebletree4u » Fri Oct 15, 2010 4:44 am

also there is more... i've had a paralyzed colon since my first episode. my bladder is spastic.3-4 times a night. left foot numb. pain behind my left knee. without the use of my leg brace, i fall at without notice. i don't have stomach pain. ever.
the pain in my left testicle is unforgiving. i sit on frozen water bottles for relief. if i dont use an object to elevate my tailbone from a chair, my left leg goes numb in minutes. if i sit for more than 20 minutes, my hips pop.
some days i feel pretty good, i can't run. fight or flight is non-existent. other days, i lay on the couch wondering what i did wrong.
i've always believed, in life you play the hand your dealt... this is ridiculous.
trebletree4u
 
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Joined: Thu Oct 07, 2010 6:11 pm

Re: looking for help.

Postby Judith » Fri Oct 15, 2010 5:49 am

did your neurologist ever rule out Guillain- Barre syndrome ?

Judith
Judith
 
Posts: 30
Joined: Sun Sep 19, 2010 5:34 am

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