The Challenge I Must Face

It's been a very challenging few weeks, to say the least. Last Saturday I was brought to the ER, once again - the 4th time since the Holidays. I took the dog for a short walk, and as I did, my legs felt very heavy, like sandbags, and began to tremble and shake, then I collapsed on the rural road my parents live on. Somehow I made it back to the house and my step-dad saw how bad my legs were shaking - they were so weak he had to help me in. All he could say was, "Jesus Christ."

When I laid down, I started having low back pain, and then he brought me to the ER. Now, my parents live in the Damariscotta area, so the little hospital only has an MRI on some days, not all the time (sigh). I had moved up with them at the beginning of my strange illness, in February 2008, when symptoms of respiratory issues and severe fatigue, as well as joint pain and overwhelming swelling of my lymph areas (my underarms had swollen to the size of peaches).

Last Tuesday, I finally had an MRI of my spine and brain at Mid Coast Hospital in Brunswick, Maine. I still don't have a diagnosis, but the MRI shows I have 3 discs out in my neck, one is pinching a nerve about 1 cm!! But that is not causing any of the symptoms I am experiencing. I will be undergoing a nerve conduction study on June in Scarborough with a neurologist. I assume he will be considering MS, as the ER doc was quite concerned with the symptoms that are much the same. It is quite amazing actually, as I have everything down to the recent speech issues, ringing in my ears, and of course, the original breathing problems:

Multiple Sclerosis: Recognizing Multiple Sclerosis

Multiple sclerosis symptoms generally appear between the ages of 20 and 40. The onset of MS may be dramatic or so mild that a person doesn't even notice any symptoms until far later in the course of the disease.

The most common early symptoms of MS include:

* Tingling
* Numbness
* Loss of balance
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include

* Slurred speech
* Sudden onset of paralysis
* Lack of coordination
* Cognitive difficulties

As the disease progresses, other symptoms may include muscle spasms, sensitivity to heat, fatigue, changes in thinking or perception, and sexual disturbances.

* Fatigue . This is the most common symptom of MS. It is typically present in the mid afternoon and may consist of increased muscle weakness, mental fatigue, sleepiness, or drowsiness.

* Heat sensitivity . Heat sensitivity (the appearance or worsening of symptoms when exposed to heat, like a hot shower) occurs in most people with MS.

* Spasticity . Muscle spasms are a common and often debilitating symptom of MS. Spasticity usually affects the muscles of the legs and arms, and may interfere with a persons ability to move those muscles freely.

* Dizziness. Many people with MS complain of feeling "off balance" or lightheaded. Occasionally they may experience the feeling that they or their surroundings are spinning; this is called vertigo. These symptoms are caused by damage in the complex nerve pathways that coordinate vision and other inputs into the brain that are needed to maintain balance.

* Impaired thinking . Problems with thinking occur in about half of people with MS. For most, this means slowed thinking, decreased concentration, or decreased memory. Approximately 10% of people with the disease have severe impairment that significantly impairs their ability to carry out tasks of daily living.

* Vision problems . Vision problems are relatively common in people with MS. In fact, one vision problem, optic neuritis, occurs in 55% of people with the condition. Most vision problems do not lead to blindness.

* Abnormal sensations. Many people with MS experience abnormal sensations such as "pins and needles," numbness, itching, burning, stabbing, or tearing pains. Fortunately, most of these symptoms, while aggravating, are not life-threatening or debilitating and can be managed or treated.

* Speech and swallowing problems . People with MS often have swallowing difficulties. In many cases, they are associated with speech problems as well. They are caused by damaged nerves that normally aid in performing these tasks.

* Tremors . Fairly common in people with MS, tremors can be debilitating and difficult to treat.

* Difficulty walking. Gait disturbances are amongst the most common symptoms of MS. Mostly this problem is related to muscle weakness and/or spasticity, but having balance problems or numbness in your feet can also make walking difficult.

Other rare symptoms include **breathing problems** and seizures.


It will be a relief honestly, if this is MS, since there has been no diagnosis for 7 months now. They may have to do a spinal tap to get a sample of the spinal fluid to see if there is any evidence of myelin sheath protein which may be breaking down, which is the reason for all of the symptoms.

I have a cousin and a friend that has MS. There are treatments that will improve my quality of life and I will be able to go on. I am not afraid of MS, I just am done with living in limbo. My friend's MRI came out fine, and the only way they dxd the MS was by doing a spinal tap.

The possibility of it being something else, like mitochondrial myopathy has also been discussed by my pulmonologist. He is sending me down to Mass General in Boston (yes, again) for an exercise study. They will make me do yet another exercise study hooked up to 2 catheters out of my arm and neck. They may have to take muscle samples. I do get migraines and all the symptoms of it. However, it is much more rare than MS.

The latest results from my last visit at MGH in Boston on May 22 have interestingly shown a positive ANA (which shows an antibody to my own cells - an autoimmune response), but no positive for lupus or rheumatoid arthritis or any of the others. However, it can take many years for lupus to be diagnosed.

On the other hand, patients with Multiple Sclerosis ALSO have a positive ANA result (as it is an autoimmune disease that attacks the myelin sheath in the spinal cord and brain). In fact, my rheumatologist from MGH encouraged me to see a neurologist, to rule MS out of course. I also made an appointment with the UMASS MS Clinic in Worcester for July after I saw him and after I talked at length with my friend who has MS who encouraged me to make an appointment.

Ironically, I had made this appointment before my most recent visit to the ER. My breathing had become terrible and my knees were feeling that sometimes they were going to give out (and soon, my legs did). I do also experience what are called "tremors" and "spasms" where my legs will "kick" without my telling them to. I also have a problem "knowing" where my feet are at random times when I am walking.

Otherwise, I am hanging in. I really would just like my life back, but I will take what I am given. Sometimes, though, I don't understand why all this has to happen. All I want is an answer, a diagnosis, I'm not even asking for a cure or an end to the daily pain, the fatigue or the fact that my life has done a 180. I feel like knowing what is going on is not too much to ask, especially since it has taken my job, my apartment, and - my life as I knew it.

I am trying not to live in fear. Though the pain can be quite wearing. I think the whole hope of going down to Boston the first time and getting a diagnosis was crushed when nothing came of it. I was devastated, but I have recooped from that. One of my friends in college used to call me "resilient" and now I know why. I have been through some challenges in my life, as we all have, and I've been told those words, "What doesn't kill you makes you stronger" and I used to ask, "Why do I have to be so strong?"

Well, I know this is the answer. I can't think of anything in my past that has been more challenging in any way. There are days that are very bad, but I know I will get through this. I am truckin' on. Or as my friend Lisa in Florida says, "Bring it on!" :)

I feel like I have been reborn to fight this, and I am not the person I was before on a spiritual, emotional and most of all physical level. It's bittersweet and very challenging, and painful inside and out, as some friends I find have not been friends at all - and of course, then, I realize never were.

I think my true friends are the reminders of my strength and new friends are the promise of the future. I know this will be difficult, and I'm not even talking about finally getting the diagnosis, getting treatment, physical therapy, getting well and THEN fighting to get disability. Oh, God - Social Security is terrible so I hear. The system set up to HELP people in this situation, who are fighting for their own health, then have to fight the system. I have a friend who is battling breast cancer and hepititis C who was DENIED and another friend with MS was denied and had to get a lawyer. Apparently, you have to be denied 2x before they even look at you, unless you have a great attorney.

I am so thankful that when I was working, I bought into an income protection plan that will cover me for 52 weeks, as long as my doc ok's it. I just have to stick to the small battles and not think about the whole picture right now. It's way too overwhelming to do that every day.

There is also a frustration that I cannot heal myself instantly, but then I must remember what my vessel is going through, and I have to forgive my own level of energy, which is brought down by daily pain. And I am realizing that it's ok to receive from others. I have always been fiercely independent, giving to others. Now it is my lesson to learn how to receive and depend a little.

But out of this must come Truth. When I do come out of this, I know I will be able to help others who live in chronic pain. It is too much to bear by oneself.