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Joined: Jun 2011
Posts: 343
gilth Offline OP
Fourth_Degree_AS_Kicker
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Fourth_Degree_AS_Kicker
Joined: Jun 2011
Posts: 343
I'm struggling a bit.

I just last week got a lower back MRI result that stated I have a large prolapse (herniated disc) in my L5/S1 joint, that is pressing on the nerves in my spine.

It is of course part of the reason I have been to the doctors multiple tens of times complaining about lower back pain for 2 years now. So I know it's not a recent event. I also know that I have been plagued by sciatic type pain shooting down my left leg, numbness in my left buttock, periodic lowered sensation in my penis, (so sorry about bringing that up but well....I have.) stingy nerve pains in my legs (although I get them in my hands as well)for a while when the pains were at their worst this winter I had episodes of my right leg feeling like it moved slower than I wanted it to, I have had incontinence symptoms, and I have huge stomach issues, and to be frank I struggle to go to the bathroom at times.

And the last few days I get twiches in the large muscle on the front of my right thigh. It's like the muscle activates a short second then lets go again. It all scares me and I really want to see my GP, and tell him. I asked twice for them to get him to call me, and still I just got that letter saying in 2-3 weeks.
The pains in general are a lot better, I have been a VERY good boy and excercised a lot lately, it has driven the pain back
I have been trying to get into my GP's, but they are stalling and saying I should have an appointment within 2-3 weeks.

I have read online that prolapses now are seldom operated on, but if you feel incontinence, muscle twitches, numbness etc, it's to be operated on acutely. And I have had this for 2 years(!)

I fear permanent nerve damage, and I also have decided I want the rest of my spine and my neck MRI'd, as my neck has been twice as painful as the lower back ever was and for the same duration.

I also want to have a colonoskopy, as I am showing more and more signs of stomach trouble. I have been put of by doctors to have it looked at each time I have had trouble with it wich is now for 16 years on and off. I have periodic hemorroids, cracking, red blood, have mostly had very hard, dark and slow moving stool (again sorry for the grossness of this post) the last years, but after I tried NSAID (Voltaren) it has exploded in a bad way. While on it I felt better for a short while, off it just flared terribly and still am. massive constipation, bloating issues. I can feel and hear things moving around in there, and it now and then feels like something is being pulled through a really narrow passage. Crohns has passed my mind, it could very well be a culprit in my joint pains, and inflammation.

So I want these 2 tests ordered, and I really want to talk with him about why it took 2 years to order an MRI and find something as obvious as a prolapse...from time to time It has even crossed my mind to call the ER on account of the prolapse thing.

And I am going to a specialist back hospital for a 4 day stay next week wich has a back training program. What if I shouldnt be there but should really be operated on?

Advice please!!! -I feel a little alone now.

Love
gilth


Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer
Joined: Jun 2011
Posts: 343
gilth Offline OP
Fourth_Degree_AS_Kicker
OP Offline
Fourth_Degree_AS_Kicker
Joined: Jun 2011
Posts: 343
Oh forgot to mention; after the Voltaren, I change between diarrhea and hard stool.

Actually the only time I felt good was while on antibiotics. It's weird I have always felt antibiotics made me feel a lot better, and I'm not talking about the sepearate things I actually took the antibiotics for.

EDIT: Oh and I just now noticed: I had an eye infection just a few weeks back, but it cleared, but now I just looked in the mirror and the white in my left eye is a lot red. It doesnt hurt at all, but thats just what I needed to top the day off.

Last edited by gilth; 03/20/12 04:09 AM.

Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer
Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
Offline
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865
Hi smile
So sorry you're feeling so low. I think you need so see a neurosurgeon asap to be evaluated. The incontinence and PD are classic severe nerve impingement issues. Can you go to the ER? My sisters both had discectomies in the past 18 months, so it must be an option. I dunno... being in a pool is the only thing that helps relieve that L5-S1 pressure for me.


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Jan 2010
Posts: 2,105
C
Major_AS_Kicker
Offline
Major_AS_Kicker
C
Joined: Jan 2010
Posts: 2,105
The specialist back hospital might actually be a better place to complain about the numbness, and other nerve related problems. At this point with it now being a long term thing, I don't think there are going to be any additional benefits from being seen urgently or urgent surgery. Just make sure that you do describe altered nerve sensation stuff in good detail, and make sure the back hospital does actually do a neurological examination (checking reflexes, etc). I think it would be a lot more likely that you would get referred from there to the appropriate place (possibly neurosurgeon) than from your GP.

I have a somewhat similar problem - my acute back pain happened 5 years ago, with onset of bladder problems at the same time, and I have similar disc problems to you. Now my doctors won't do anything about it because it isn't an acute problem, and to be honest, I really don't think surgery would give me any more function now. As long as it is stable and not getting any worse surgery may not be useful for you either. It would be really good for some doctor to acknowledge it as the cause of problems though.

Joined: Oct 2007
Posts: 1,728
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naj Offline
Diamond_AS_Kicker
Offline
Diamond_AS_Kicker
N
Joined: Oct 2007
Posts: 1,728
Wishing you didn't have to go through this. Sending all my best wishes for feeling better soon. So sorry it is a hard time. No advice but heartfelt empathy.


______________________
Jan
(naj)
Joined: Feb 2010
Posts: 2,190
A
Major_AS_Kicker
Offline
Major_AS_Kicker
A
Joined: Feb 2010
Posts: 2,190
gilth, I agree that you need a colonoscopy. Your symptoms sound like IBD. Do you have a GI? If not you need to really bug your GP about a referral. Bleeding in the GI tract can also be a sign of bowel cancer. Tell GP you want to rule out cancer.


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
Joined: Sep 2011
Posts: 526
Veteran_AS_Kicker
Offline
Veteran_AS_Kicker
Joined: Sep 2011
Posts: 526
They will do some biopsy tests to see if you have celiac disease. Hope you get feeling better soon.

Joined: Jun 2011
Posts: 343
gilth Offline OP
Fourth_Degree_AS_Kicker
OP Offline
Fourth_Degree_AS_Kicker
Joined: Jun 2011
Posts: 343
Erika:
I almost went several times to the ER. I exploded today though,after having called my GP's office thursday and Friday to get them to have him call me and no phone. Then I went to their office yesterday and said "I will not wait 2-3 weeks, I want in THIS week". They said they would see whats possible, I got no phone back yesterday and still not at midday today. I called them, and asked if I was getting an appointment this week, they said "no, they didnt think so", and I answered "ok, but the next three calls I make is to the responsible district doctor, the region doctor and the patient liability section, I have had it with this treatment!". She meekly answered that I could come in tomorrow afternoon.

cemc:

I totally agree, it may very well by coincidence be the excact thing needed going there, but I still want my doctor to talk to me after this discovery, and not in a few weeks either, hehe smile

naj:

Thank you! -Just that is a lot of help, it makes me feel better knowing somone cares!

avonldy:

Aye, I thought so too. No, no GI. At least not yet. I will bang the walls for one tomorrow when I see my GP.

elmerfudd:

Thanks smile -And yep, they probably will.

Love
gilth


Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer
Joined: Feb 2011
Posts: 1,968
Pea Offline
Captain_AS_Kicker
Offline
Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968
Gilth,

I feel you! I had a counselor explain that if you are very ill, you can march into any hospital and demand comprehensive care and they can't deny you. If you don't feel it is enough, she told me that you can speak to the administrator. I never knew this. Sometimes you have to do what you have to do.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Joined: Sep 2009
Posts: 1,236
Copper_AS_Kicker
Offline
Copper_AS_Kicker
Joined: Sep 2009
Posts: 1,236
I haven't read the whole thread, but I recommend Miralax to help with movements. I have always battled constipation, but especially the past few months I've been on chemo. I also recently read that severe constipation can cause incontinence and I have been experiencing this as well.

I don't know about your back issue. all I know is that for me, my thighs get numb and painfully tingly if I'm on my feet for very long and nobody seems to know why, cuz my MRI doesn't indicate that it would be a problem.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
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