Seeking help with undiagnosed condition

[PaulSa]

Hi, I have been doing a lot of research on the internet on my condition and happened to come across this site. Looks like there are a lot of people who have similar conditions as I do and I was hoping to get some support or feedback on my condition. I have bilateral buttock pain/burning that began 3 ½ years ago and has now progressed to occasional warm sensation travelling through my legs. I have seen many doctors and specialists and have yet to be diagnosed with anything conclusive. Below I have a timeline of my symptoms and tests I have completed since this began.

Medical History – Timeline


December 2007
– Began feeling burning sensation/pain bilateral in buttock area along with some numbness down into the back of both the legs

February 2008
- Went to doctor; he advised to take Advil for a week, no relief

February 23, 2008
- Began taking anti-inflammatory pills, no relief

March 2008
- Began therapy (acupuncture & laser) for 6 week period
- Slight improvement

April 2008
- Purchased gel seat cushion for office chair, makes sitting somewhat bearable

May 2008
- Had x-rays; results showed normal

June 10, 2008
- Sports Medicine Specialist diagnosed me with bursitis and administered cortisone shot in right cheek
- 40% improvement for about 3 weeks

June 25, 2008
- Had CT scan; results showed normal

July 7, 2008
- Had second cortisone shot in left cheek
- No relief
- Pain in same place on both sides

August 2008
- Began physiotherapy, including Active Release and acupuncture

September 9, 2008
- Had MRI preformed on lower lumbar as per Dr., results showed slight bulged in disk but it was not touching any nerves

February, 2009
- Received Sit/Stand workstation at work and have been standing since

March 2009
- Had bone scan preformed, results showed normal


September 2009
- Had MRI preformed on pirformis area, results showed mild tendonitis in left hamstring

June, 2010
- Had epidural steroid injection, no relief


December 2010
- Had appointment with Neurologist; performed internal exam of rectum; legs began dead in the sense that it takes a few steps for the feeling/movement to return. Standing at work all day has now become extremely difficult; numbness was constant with rushes of heat going through legs to feet, occurring 10 – 12 times daily, lasting up to 10 seconds. Burning pain in buttocks has no relief now, even when standing

February, 2011
- Had nerve block preformed on Pudendal nerve, brought pain level to 4/10 for 4 days then returned to normal pain level which I rate a 7

March, 2011
- Dr. prescribed 300mg of Gabapentin 3x daily (been taking 1x daily for last week to build up to 3x daily dose; makes me very loopy)


Symptoms have been progressively getting worse in the last 8 months. The first 2 ½ years I had this condition if stood long enough I would forget I had it. Presently, heat is continuing to radiate through legs and in left arm (at times). Pain/burning in buttocks (bilateral in sit-bone area) worse with no relief; radiating up to waist and when at worst into to scrotum area.

Seeing Neurologist in 3 weeks with a list of questions and possible conditions researched on internet. Thinking about travelling to The US from Canada to conduct an MRN as a next step as no one here can diagnose me but thinks its nerve related. Any thoughts on this test? Not sure what next steps should be at this point. I am getting very frustrated and depressed, living with this for 3 ½ years. I am 38 years old with a 2 ½ and 8 month old baby; can’t do even the simplest things and I am beginning to think this will never get diagnosed or worse continues to progress to the point I am unable to do anything.

[Violet M]

Hi Paul,

There has been some discussion on the forum about whether the MRN or 3T MRI with Dr. Hollis Potter in NYC is the best way to go. Not sure I can say conclusively but patients who have had the 3T MRI from Dr. Potter seem to be pretty impressed with the results.

Sometimes PT's who are trained in treating pelvic floor tension can assist in determining where the pain is coming from so you might consider an evaluation from one of the trained PT's listed on the HOPE website. Some people get relief from physical therapy for pelvic floor tension but usually you will know pretty quickly if it's going to help you or not.

[Lernica]

Paul,

When I first started on this PN journey, painful burning buttocks and hips were my primary symptom. I find that doing anything to relax the muscles in the buttocks and pelvic floor really helps. Sometimes the pain will go away for hours at a time. Ways to relax the buttock muscles include:

1. whirlpool, hottub
2. massaging buttocks with a tennis ball against a wall (or better yet, a therapeutic massage ball which is slightly bigger, you can get it at any yoga supply store)
3. if a tennis ball is not available, a doorknob will do!
4. piriformis stretches (google for details)
5. muscle relaxing drugs such as a benzodiazepam (eg. clonazapam) or Robacexet
6. antidepressants
7. frequent lying down to rest, on the floor at work if necessary
8. using a seat cushion that has a hole in it (there are many examples on this website)

I'm sorry you are going through this but once you settle into a treatment regime, things will improve. If you too are located in Toronto, please PM me and I can give you the names of my caregivers in this city.

Lernica

[PaulSa]

Hi Paul,

There has been some discussion on the forum about whether the MRN or 3T MRI with Dr. Hollis Potter in NYC is the best way to go. Not sure I can say conclusively but patients who have had the 3T MRI from Dr. Potter seem to be pretty impressed with the results.

Sometimes PT's who are trained in treating pelvic floor tension can assist in determining where the pain is coming from so you might consider an evaluation from one of the trained PT's listed on the HOPE website. Some people get relief from physical therapy for pelvic floor tension but usually you will know pretty quickly if it's going to help you or not.

I just learned that some of the hospitals here in Toronto have 3 Tesla MRI's, going to call to see the software they are using. Maybe I can get the MRI here and send it to Dr. Potter to read.

Just had my first session today with Nelly Faghani. She is a highly rated Pelvic specialist, after today's meeting she seems extremely knowledge. She's studied both in Canada and in the US and has helped many people with similar conditions.

[PaulSa]

Paul,

When I first started on this PN journey, painful burning buttocks and hips were my primary symptom. I find that doing anything to relax the muscles in the buttocks and pelvic floor really helps. Sometimes the pain will go away for hours at a time. Ways to relax the buttock muscles include:

1. whirlpool, hottub
2. massaging buttocks with a tennis ball against a wall (or better yet, a therapeutic massage ball which is slightly bigger, you can get it at any yoga supply store)
3. if a tennis ball is not available, a doorknob will do!
4. piriformis stretches (google for details)
5. muscle relaxing drugs such as a benzodiazepam (eg. clonazapam) or Robacexet
6. antidepressants
7. frequent lying down to rest, on the floor at work if necessary
8. using a seat cushion that has a hole in it (there are many examples on this website)

I'm sorry you are going through this but once you settle into a treatment regime, things will improve. If you too are located in Toronto, please PM me and I can give you the names of my caregivers in this city.

Lernica

Thanks for the info! Please see my response to Violet's post. Can you please send the names in a PM when you have some time. TIA

[JRS]

Paul, I am glad you have found Hope. I wanted to share that I had a similar thinking on the 3T MRI being performed here in my city and paying a fee for Dr. Potter to read. To that end, I called her office just last week and was informed that she will not read outside films. Her assistant advised it isn't that Dr. Potter doesn't want to help but has had an influx of PN patients in the last year and it is a capacity issue "as reading a PN MRI isn't like a knee"... Please post back if you learn something different and I'm sorry if I am the bearer of bad news. On the plus side, she did advise that Dr. Potter will share her written protocol if your doctor calls her. In my own opinion, with such a rare condition, the test is only as good as the one that can interpret it.