Tuesday, January 22, 2008

Will My Daughter Have MS?

When my wife and I were trying to decide if we wanted to have children, we started researching some of the issues we were worried about. One of those issues was whether my wife's MS would be passed on to our child. Since we have doctors and other health care professionals in our family, I started asking around about what the medical schools were teaching. It was almost funny because I couldn't seem to get a clear answer on what they thought. One of the more recent medical grads said that when he started school they were adimant that MS was not hereditary, but then they revised their medical books to say that there was a chance that it was hereditary. Does anyone really know?

My wife was one of the first women diagnosed with MS in the US, with a mom that also has MS. Her diagnosis was in 1990, so it wasn't that long ago that the medical community thought it wasn't hereditary. So, we started doing more research and trying to find out if we would be bringing a child into the world that would deal with the same issues my wife is having. After a lot of reading and studying, we really couldn't find any clear cut answers. We did find out that Multiple Sclerosis seems to go into remission when a women is pregnant, and that after the pregnancy, many of them have MS complications. We were lucky enough to be seeing Dr. Swank at the time, and he reassured us that if we would follow his protocol we would have minimal issues. He recommended that my wife get plasma after the pregnancy and she did great. Not only did she not have problems, she actually felt better and had more energy after the pregnancy than before. We have used the plasma protocol since then for surgery and other tramatic events, to try to keep her MS from causing issues.

Now we have a beautiful ten year old girl on our hands that we really don't know if she will have any issues or not. There have been some signs that point to her maybe having something down the road. Who knows if that will be MS. We do know that after live blood cell testing, our daughter has the same borrelia in her blood that my wife and I have. We're not sure what that means yet, but we are hoping that her body continues to fight it off. We also know that when we started natural treatment for the borrelia, she couldn't take the kill off of the bugs. She would ache all over and have physical pain from the medicine killing the borrelia. This is normal, but not to the extreme that she was feeling. We had to stop treatment because she couldn't handle it. Since then, we really haven't attacked the issue. I think part of reason is because we really don't know what to do.

As a father, I worry constantly that she is going to have problems. Right now she is a normal child with normal kiddo issues, but I know my wife's symptoms didn't show up until her late teens. Every once in a while we see one of the weird issues pop up that makes us wonder. For example, she has had some pain issues in her hips and legs that really can't be explained. She hasn't compained about this for awhile, but the doctors didn't know what to do with it either. Her hips would hurt so bad that we would have to rock her to sleep at night because when she laid down she couldn't handle the pain. We tried all sorts of things, but nothing seemed to help. Then it just went away. We were relieved and worried all at the same time, but we haven't had anymore major issues in a while. She is extremely active and competes in gymnastics, and her body had held up fine over the last few years. It's those moments though, where we know that something is not right, that really worries us. The other day I shared some news with her about something she was excited about, and she became so excited that she just started crying. It was way over the top, but I don't know if it is something wrong or her just being a girl. Either way, it still worries me.

We will continue to keep an eye on her, but I don't know that anyone really knows if MS is hereditary or not. The answer we hear now is that they may have a genetic disposition to the disease. To me it still sounds like they don't really know. One thing I do know for sure is that we will continue to love her and support her as she grows and matures. She is going to do some amazing things in life and I hope and pray that she never has to deal with MS. Maybe one day we will find that answer to MS, but for now, we will take it one day at a time and live life to it's fullest.

2 comments:

Angie said...

I just stumbled across your blog a few days ago, & am working my way thru all of the posts. I must say that I have enjoyed your realness & appreciate your love for your wife. It shows in every word that you type. My name is Angie & I'm a 37 yr old female. All my life I've been told (due to precursors) that I would someday probably have MS. I was dx w/optic neuritis @ age 13 (tho I didn't know this until my late 20's) & have suffered from headaches & back pain since I was 14. After I had my daughter at age 25 is when things really started to go down hill. I had many hospitalizations & too many tests to mention & as a result MANY neurological dx's as well. 1 of them being Arnold Chiari Brain Malformation I. I'm not sure if you are familiar w/it but it can have a lot of the symptoms that MS has. 2 years after my dx my daughter was dx with that as well. Just last year I started with a new neurologist, whom I just love, & he also was POSITIVE that I had MS. Even though I had a negative spinal tap in my 20's and my brain MRI's had never shown any lesions. He did a demyelination MRI of my spine & brain & it came back normal. So he dropped the MS thing & started to lean toward the "migraine" thing again. Which frustrates me. But anyway. 1 month ago I had an episode of partial facial paralysis but ONLY when I would smile. I felt fine (I was at the hair salon) & continued through my appointment. 5 hours later my family talked me into going to the ER where they were running tests to rule out a stroke. While in the ER I developed what I would classify as THE worst headache of my life. And I've had BAD headaches. That headache ended up lasting 23 days & just ended last Thursday. While in the ER I had an MRI, MRA and MRV (I believe) that ruled out stroke (showed a possible aneurysm that later turned out to not actually exist) but it did show lesions on my brain. The report says that they are in my frontal lobe & that they aren't in a typical place for MS. But my Neurologist wants me to see an MS specialist. (One that can't get me in until the end of August) I should explain that my 29 year old brother was also told all his life that he would have MS and was dx 2 years ago. Which is what makes me comment on this post. My brother who is a bit of a research buff on the matter of MS (or anything for that matter) swears that the statistics are not in favor of siblings both having MS. However, I've not found anything to support that. I've actually seen a quick document online regarding the likelihood of twins both having MS being highly unlikely, yet still possible. I should also mention that he is my half brother. So I'm quite curious what will come of this myself. After this episode with the crooked smile & debilitating headache I've had a slew of other symptoms. From extreme fatigue, numbness & tingling in my extremities (which is nothing new), heaviness in my limbs (almost to the point of not being able to lift my arms or walk without feeling like my legs will give out) to pain in my legs and hands. COMMENT CONTINUED BELOW DUE TO TOO MANY CHARACTERS

Angie said...

CONTINUED FROM ABOVE:

I will also say that I've had many hospitalizations in the past years for these types of symptoms (mainly headaches) & that they seem to happen in spurts. I'll be fine for a while, even a couple of years and then I will go through a month or few where I just can't seem to catch a break. I even was hospitalized about 8 years ago for a week for an episode of blindness that only lasted for about 20 minutes but was still very scary. No one has ever been able to offer any kind of real help in this. I know that MS is a very painful (emotionally, mentally and physically) disease, but is it wrong that at this point I would almost welcome the dx just to KNOW what is wrong w/me and to not feel crazy?! My brother is in remission & is doing well (altho lately he's had a "spiritual revelation" that he should take himself off of his meds, except for his Avonex, which I just don't think is smart - but I'm sure he will learn that. Anyway, I am so sorry to ramble on. I just wanted to give my 2 cents about the hereditary thing. But it's kind of hard to do that w/o some history first. I'm sure that I will be commenting on your posts as I get through them. I promise none of them will be this long again. ;-)