Aa
Aa
A
A
A
Close
Avatar universal

quix - timeline and question

I had left my other post and you had asked for a quick history update.  I coudln't find the post again, so here is a new one.  I'll start from the very beginning (according to doctors)

Four years ago (Jan '03) I had a terrible car accident.  I was paralized for nearly a week due to muscle damage.  I spent three months in physical therapy/chiropractics/massage therapy.  I was let go, for what i think was too early, told I would walk with a limp and my never stand up straight again (I stood with a slight slouch all the time).  I worked hard at strengthing up all the muscles I had damaged, and managed to get myself into enough shape to complete a marathon.

I did damage my knee on training for a second marathon, and saw an orthopedic.  There I was told to cross-train and took up triahtlons.  At a cycling clinic I met my current chiropractic physician.  She worked with me to get my posture back and my head back on my shoulders.  Then I got pregnant in feb/march of '06.  I felt good throughout my pregnancy, though towards the end I had a lot of pelvic pain due to his head sitting very low.  I worked with my chiropractor, since the ob/gyns told me there was nothing I could do.

I had a difficult delivery.  14 hours back labor including 2 and a half hours of pushing.  One thing, I remembered a little while ago.  My water never broke.  I pushed the sac open and there was merconium ( I know I didn't spell that right).  After another 2 hours (to total 2.5) I was sent in for an emergency c-section.  The one thing to note, I was given an epidural, but it never fully took on the left side.  They started my c-section, after injecting more anasthesia into the catheter, but it still hadn't taken on the left side, and I had even more feeling than when I was pushing. I screamed and finally they stopped and knocked me out by gas.  When I awoke, I was in extruciating pain and could barely breath.  The nurse had to fight to keep me in the unit for an extra hour and on oxygen.  I returned to my room, still having trouble breathing and not really feeling right.  I was on pain killers for so long, but still felt a little bit of pain.

I had a fluid cyst under the incision that burst, opening the incision.  Without anything, they opened the incision to a full 1cm at the point it opened and squeezed out as much of the fluid as they could.  A week later, I got a UTI.  The next week, I got a yeast infection.  Then I noticed a little red dot coming out of the incision.  Three weeks later, I had a wound care specialist cortirize the wound.

Then after the pain killers were done.  I felt strange sensations down my left leg and a burning pain across the incision.  I bled for nearly 4 and a half months, before the birth control (Nuvaring) finally started to stop the bleeding.  But by then, it got worse.  My leg would die underneath me (get so tight I couldn't move it) and the spasmining got worse and spread into my back, then my left arm.  and now it's starting on the right side too.

I had seen an ob/gyn who said it was postpardum depression, but I knew that wasn't the case, so I sought out a third doctor and a nuerologist.  Here is the neurologist findings first:

EMG/NCVs"  Lower Left extremity and lower back muscle damage in every muscle tested, and appears three nerve groups compensated for one major nerve (I'm 26 and the results came back like I was in my 40s), neck and upper extremities, returned muscle damage in every muscle tested and bilateral carpul tunnel and guyon tunnel, and left cubital tunnel syndrome

Blood work:  Mildly hyperactive thyroid (in the 93% but not high enough to warrant medication), EBV Igg, HHV-6 and HSV-1 Igg, anemic (Fe, low side of normal on B12)

CT scan of pelvis:  air pocket common to surgery

MRIs:  lumbosacral spine - bulged disc but not touching spinal cord at L5-S1, mild bulges at the two discs above this one, osteophytes on vertebrae around L5-S1, and spinal cord ends too high, possible tension.  Cervical spine:  initial radiology report states hypertrophied annenoids, but waiting for neurologists assessment on Tuesday

X-ray:  Cervical spine:  straightened neck, but disc space appeared good, curvature slightly wrong.

OBGYN findings:

Bladder test:  hold less urine than most people, but I can empty it fine

Cystogram:  waiting for results, doctor who performed the test asked why they haven't done a brain scan yet

Observations:  two of the gyns want me to have an MS test (not sure what that is) and have referred me to UPenn, but the appointment isn't until Aug. 21.

Should I really push the nuerologist tomorrow for a brain scan?  I don't know anymore.  I started getting dizzy when I get up from the supine position or when I change rooms with different lighting.  This has come and gone my whole life though, just never paid as much attention to it as I have now.
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Sorry, I've been gone for a few days.  Major project at work, long hours and no time.

Severe abdominal cramping is all of the above.  Sometimes it feels deeply internal, but other times it's cramping like a hard workout, or uterine-type cramping.  I was recently diagnosed as having IBS, something I never had prior to the delivery.  It is usually accompanied with changes in my bowels, but almost feels like the cause of the changes than a symptom, but that's just how it feels, maybe not how it is.  Usually I wake up that way and remain like that for days.  The IBS medication is Librax, an antispasmic medicine.  It was working, but now doesn't seem to have an effect, unless I take it right before the pain starts.  If I wait too long, and it's supposed to be used on an as needed basis, it doesn't help anymore.  I was on Nuvaring, and for about a week the abdominal pain went away, but then it came back.  and with avengance.  I had a few days where it hurt to stand up, but once I did it would loosen up a bit.  The pain gets extremely bad when I get my period or am ovulating, hence why he think it might be connected to a stroke and the pituatary gland (linked to hormonal changes).  

Thank you for your prompt reply.
Helpful - 0
147426 tn?1317265632
Hi, I wanted to let you know that your timeline hasn't fallen by the wayside.  Also, when you say "severe abdominal cramping"  I gather that you are referring to internal, intestinal or uterine-type cramping.  Is this correct?  If it is, is it associated with any change in your bowels - gas, bloating, diarrhea, constipation?  How would that be connected to a possible stroke?  Are you on any new meds, including hormones?

If you are talking about cramping of the abdominal muscles, the "ab's" then yes, many people with MS complain of cramps in the torso muscles.

Quix
Helpful - 0
Avatar universal
Thank you for getting back so quickly.

I don't know about which antibody, but I'll be seeing him soon and can find out. He seems open to ideas and working with me on my individual research.  

Is severe abdominal cramping a symptom of MS?  Because this was his main idea with the stroke, since my gyns don't seem to think I have endometriosis or another condition due to the pregnancy/c-section.

Helpful - 0
147426 tn?1317265632
Yes, he's thinking hard about what he finds on your exam and what your history shows.  That's good.  I'd prefer Lyme or CIDP, because those are the most treatable.  I don't see how the stroke/pituitary/hormone thing could cause such diffuse, severe muscle damage, unless that is unrelated or partially related and due to the back injury.  The various stimulating hormones from a damaged pituitary can be tested for in the blood.

Well, good.  Someone is listening and thinking.  That's what you need.  My fingers are crossed.  He's thinking creatively, even seeing if he can put together the circumstancial evidence for treating MS if there is enough data.  

I wonder if he sent anti-Myelin Basic Protein - anti-MBP - or anti-oligodendrocyte antibody (anti-MOG).  Do you remember?

The positive tests that you mentioned above are antibodies against some of the most frequent viruses people get, Epstein-Barr (Mono), Cold sore herpes, and the virus that causes the infant rash illness, roseola.  this last virus Human Herpes Virus-6 has been implicated, but without great substantiation in causing Chronic Fatigue Sydrome and in setting off MS.  96% of all adult have +IgG to it, so it's a hard case to make.

Good to hear from you.  If what I said raises more questions, just ask.  Quix
Helpful - 0
Avatar universal
I had my appointment with the neurologist today.  It went really really well, because I feel like i'm getting closer to an answer, though what I heard wasn't exactly what you want to hear.  It's weird, but narrowing it down to three possibilities, none so good, makes me feel like at least we're getting somewhere.

As to the blood work listed above, these were the findings (positive), everything else was negative, but I don't have copies of that bloodwork yet, so i don't know everything they tested for, it was a lot.  I did find out today though, that I was tested for a nerve antibody, or something like that and it came back negative.  I also found out that I tested positive for one band on a Lymes test.

We talked about CIDP, and he said that he didn't believe this was the case, because I was too active.  I did demonstrate some symptoms, but was missing many of the key symptoms, and he didn't consider this one of the potential issues.  He did, however, take me seriously about the MRI, but struggled with a way of coding it to be sure that the insurance company will cover it.  He is trying to help me out, so that the insurance company will cover the mri.  He is also sending me back for another Lyme test and redoing some of the blood work to monitor for any changes.

The three potentials:  1) Lymes Disease, but he doesn't believe this is the most likely possibility, but at this stage, he feels he can't rule it out and needs to double check it.  He believes it might be there, but is not the cause of the nueropathies. 2) MS - very early stages, might not even be detectable with today's technology.  he said with all that the gyns are saying and how they keep sending me back to him without further examination of my complaints, he feels we should go forward with the testing, though he doesn't believe we will find it on any tests.  he does think though, that this is the most likely possibility and could begin preventative treatment from progression and wants to explore it further. 3) a stroke during labor that might have damaged the pituitary gland, since my symptoms seem to coincide with hormonal changes like during my periods or ovulation.
Helpful - 0
147426 tn?1317265632
The timeline is great!  Good job - horrible story!  Try to put month/year in with the testing. You remember it now, but may not in a couple years (by which time you will have a diagnosis!  long since!)

I'll write more later, but YES, push hard for an MRI w/ and w/o of the brain.  You now have other doctors wondering why a basic test (MT) isn't done yet.  AND the L-spine suggests a high-riding cord.  This is unusual but if "tension" is suggested it must be looked at!!

Also the diffuse NCV results again suggest CICP, or another systemic process.  Right now I can't remember if you've already brought that up with the neuro.  Press for his thoughts on the gross abnormality of the EMG/NCV's.  You need answers!  Try to get the neuro to get some of these answers before you go off to UPenn.

When you listed the blood work, you didn't mention if it was normal or not.  That is important in the timeline.

Quix
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease