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.
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
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.
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
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.
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