A blank blog is like a blank canvas, or a blank page, where do you start? Could start at the beginning, but then you have to figure out where the beginning was and all I'm really sure of is that I'm not really sure of anything at this point.
The purpose of this blog is to have a place to post thoughts and feelings, a place to start in the middle (now) and try to go back to figure out what came before and what is supposed to come next. I'm not writing for anyone else, this is just for me. If it ends up being something that other find and/or get some benefit then it will have served two purposes.
Who am I? I'm a 46 yr old woman, single but in a long term relationship. I was recently diagnosed with MS. Multiple Sclerosis. That's something I really didn't know that much about or think much about until 2 months ago. Apparently that is unusual, a lot of people with MS spend years with "maybe MS" and no definite diagnosis. So I'm glad it didn't drag on, but that means it was also kind of sudden, a lot to absorb.
But it has been a whirlwind of medical discoveries this year (2009). First in July, met with my family doctor and had routine blood work and was told that my Blood Sugar levels are a little high and need to be watched. My A1C is ok, but the fasting was close to being something to worry about. As a result I learned a lot about how diet effects your blood sugar and attempted (ok so I like food, especially stuff that isn't that good for you) to eat more healthy. I learned about how unlike what I thought about diabetes as a kid (my 2nd cousin by marriage had type 1 and had to take insulin) wasn't true. I remember back then everyone thought you just had to avoid sugar, but could eat most anything else - including all these starchy potatoes and fruits and carbs all of which convert to glucose and no one knew. Now the key is watching what and how much - portion control is everything. sugar is ok in moderation and you have to know how much and balance it all out. Yes, I now know a lot more about how to eat healthy - I just need to actually practice it.
Not long after I got used to the idea that I needed to watch what and how much I ate and eat healthier and watch my glucose levels so as to avoid ending up with type 2 diabetes, I ended up catching a cold/flu that was going around. I was sick for a couple days into the weekend and missed a day of work then noticed a new symptom over the weekend - bottoms of my feet were numb. Both of them. Which seemed a little odd, but I was still sick so didn't worry a lot about it. By Monday it wasn't any better and I decided to call my Dr. One of my concerns was that about 6 years ago my father had gotten Gilliam Barre from a flu shot. He never fully recovered. So in my mind I was drawing parallel's - he had a flu shot and got this disease that caused almost complete paralysis, required being airlifted to a hospital across the state and spent days in ICU and then weeks in a rehab hospital to learn to walk again. (he did re-learn to walk, and went back home, and then had relapses due to kidney infections due to not regaining complete muscle control of all systems, and was in and out of hospital and each hospital stay he lost a little more ground, until he ended up in long term care and never came back home. So, I had the flu, and my feet were numb... it needed to be checked out. I really didn't think it was the same thing, but couldn't take any chances.
After the typical round of calls to the Dr office and speaking to nurses and then later finally speaking to the Dr and being told to come in this afternoon (a week and half after the flu and first symptoms), the Dr checked my reflexes talked to me about my symptoms at that point it was my entire feet up to my ankles and no longer just the bottoms. It wasn't really that they had no feeling, they were "fuzzy" or tingling. Like electric or static shocks only constant. Never stopped. For that matter it is still there. They checked my reflexes and said mine were brisk, asked if they always were. Had no clue - what's that mean? still had the cough and head congestion too - but since my "mucus" was clear and I had no fever, I was deemed to be ok. They also said since my blood sugar level wasn't that elevated nor had it been for any length of time that they didn't think it was neuropathy which apparently is common in diabetics. So next stop - go see a Neurologist and have a MRI on the way of my lower spine with and without contrast.
That was the second time I've had a MRI of my lower spine but the first time with contrast. First time was about 3 years ago when I had some sciatic nerve pain and they didn't really find anything. So had the MRI and the contrast injection without any issues met with the Neurologist the following week. He does more reflex tests - agrees that my reflexes are brisk, and finds I have the Babinski sign - this means that the big toe flies up when you run your thumb hard along the base of your foot. This reaction is not normal, the normal response is apparently to curl your toes under, mine definitely fly up. At this point the numbness or tingling is on up past mid-calf. I have knee highs on (not literally but imaginary), they feel tight, and tingly. If you touch my skin especially lightly, I feel it like a shock wave that scatters all across the surface of my skin very irritating. He also did pin prick tests - I could feel the stick every where. He did tests with a tuning fork - I could feel the vibrations most places but when he touched the fork to the joint of my big toe, the vibrations mingled with the tingling resonating through my feet and I couldn't even feel it. He also watched me walk and tested my balance (poor - especially if my eyes were closed). I'd noticed that myself, if in the shower and closing my eyes, found that i had to have one hand or elbow on the side wall to orient myself so didn't feel like falling. I liked my Neurologist, which is important. I need to like my dr's and trust them. I think mine knows his stuff, and I like how he takes time to explain things and answers questions. We looked at the lower spine MRI's and he said there was nothing to note on them. The Dr had explained that my problem wasn't peripheral nerve issue that it was in the central nervous system (CNS), which meant either the spine or the brain, some things not so likely in the brain because it was effecting both feet equally and most brain things are one side or the other. Lyme was mentioned, and that it was something that was attacking my myelin, or the nerve shealth in the CNS. He also had mentioned some form of myelitis. He explained about how the myelin acts as the insulation on the nerves much like insulation on an electric cable keeps the wires from shorting out. Ok, so know I know what is going on, my nerves are shorting out. What causes it? He also talked about how normally they prescribe steroids (high dosage steroids) to help alleviate the symptoms like mine - but that since my blood sugar was already near danger zone, he didn't want to do the steroids since that will sharply raise blood sugar levels.
Next he wanted me to have blood work to eliminate Lyme disease, and scheduled a MRI of my upper spine/neck and brain with and without contrast. Had the blood test and heard back a few days later that no - I was negative for Lyme. Went for the MRI but was only able to get it without contrast. They weren't able to "find" a vein and/or blew out the ones they found and were unable to inject the contrast. They were only able to turn me into a human pin-cushion and bruise both elbows and the back of my one hand. Then gave up and decided if the Dr or the Radiologist thought it was necessary they would have to reschedule. Fun Fun.
Went back to Neurologist to see the results of the brain & upper spine/neck MRI's (without contrast). Repeated all the reflex and other tests - at this point the numbness/tingling is now mid thigh, sometimes feels like wearing support thigh highs - there is a definite "tightness" and fuzzy feeling, and the tingling and light touches to my skin still causes my skin to crawl and radiates like electricity, but my balance is better, and actually some of the feeling and the "normal" is returning to my feet. They still feel odd but different and there are places that feel normal. According to the brain MRI i have lesions in my brain. He can't tell if they are active (could have with the contrast but not without), and says they are also called Dawson's fingers. These are also a sign of MS and/or Lyme. I think this is the first time any mention of MS was brought up - althought that is definitely fits the description of a de-myelating disease. I'd already tested negative on the blood test for Lyme. Next step is now to have the spinal tap. This would definitely eliminate any possibility of Lyme (apparently because of taking Minocycline in the past Lyme could have been killed off in my blood by not in my spinal fluid). So that's scheduled the following week. Also, the Dr pointed out that they found a possible cyst of some sort on my left thyroid gland in the MRI of my neck. He said that would be referred back to my regular Dr to look into further. The fun doesn't end.
The spinal tap wasn't so bad. I'd heard lots of terrible things. But as I said I like my Neurologist. I met him at the clinic. My partner drove me. I even kept my shorts and t-shirt on, and just sat on the bed and leaned over a hospital tray table, and a nurse held my hands and the Dr was behind me and gave me a local and then did the spinal there was no real pain. I then laid flat on my back for about 30 minutes. He explained about how there is a risk of the hole not sealing and that when that happens it can cause excruciating headaches. That if I experienced any later that I was to lay back down on my back and if the head ache cleared that the problem was the seal and that the fix was to inject a "blood patch" back into the site that would form a patch or seal over the hole. He said it was a simple fix, and that this was a common side effect but that many Dr's didn't explain it and/or many patients didn't understand and just suffered through the headache for days or until the hole sealed itself. In my case, there was a little bit of blood when he pulled the needle out (not much) but he said that was actually good because that would create a natural blood patch. In any case he got his vial of clear spinal fluid on the first try with no real effort. He also drew more blood for more blood tests (without any problems hitting a vein). and I had zero side effects from the spinal.
It took about two weeks to get all the results. By Friday that week my Dr called me to report it was negative for Lyme. After the two weeks, he finally got the rest of the results. Apparently it was positive for some sort of bands (I forget the name) this was a confirmation of the MS. We set up an appointment for the following week to discuss next steps and medicine options. So now it is official - I have MS.
The next week my partner and I go to meet the Neurologist, and talk briefly about what this means - yes I have MS. This isn't a death sentence. I have RRMS, and the good news is that there are drugs today (called the crab drugs) that can prevent future outbreaks and slow down the progression of the disease. He also said that when he started in practice 30 years ago, there were no such drugs and when they believed someone to have MS there was nothing really they could do other than treat symptoms. He also said that without a doubt if I did not take one of the drugs that I would have other relapses it would be a matter of when and that the disease would progress and get worse. He said that wasn't a 50/50 it was a 90% or higher likelihood. He has no preference on which of the CRAB drugs - he said he has patients on each and many for several years. In some cases a patient will have reactions or one of them won't work and they might need to switch treatments but suggested it was my decision and gave me information to select 2 or more options and take home more information and read and make an informed decision. So I did, I read the materials (granted from the pharmaceutical company's point of view to sell their drug/product) and read what I could find online. My decision was to choose Copaxone vs any of the interferons. I don't like the idea of daily shots, however in my opinion the pro's outweighed the cons. No flu like symptoms for a day or more after each shot. No potential liver and other major organ damage from long term use. a slight possibility that it would actually help fight off the disease and not just prevent outbreaks. A couple more weeks and I received my drugs and I met with a nurse to learn how to do the injections.
Ok, so now I have MS and I'm now on MS drugs. Lot has happened in a relatively short amount of time. The daily shots are ok, the shot stings but not bad, worst is a burning sensation a couple minutes after the shot is done. An ice pack seems to help with that. The red spot/welts seem to clear after a day. I don't have a death sentence. People with MS live long lives. I am hopeful my daily life will not be effected in any significant way. So far it hasn't. I find I get tired and I now listen to my body and rest. Before I would have thought myself lazy. Now I think I just need to take care of myself. I'm still working on eating healthier; now not just to avoid too much carbs and to avoid raising my A1C and blood sugar levels but now also because it is important for the MS. I'm trying to get more exercise, because I should due to the MS, because I should because I have bone-on-bone osteoarthritis in both knees and in my opinion (and my orthopedic surgeon's) I'm too young to get a replacement yet.
Next up was the cyst on my Thyroid so met back with my regular Dr. who had just had me do another round of blood tests (it had been 3 months since last round - time flies when you are seeing all kinds of different Dr's and getting lots of different tests). My blood glucose level is creeping up, but the A1C is still good. Apparently this means my liver is producing too much glucose at night while I sleep so it is possible even eating healthy won't help. At this point we will keep watching. She also added a symvistatin (cholesterol med) to my drug list. Earlier this year she added lisonopril (blood pressure med) not to lower my blood pressure which is good but to protect small vessels and kidneys due to the potential of damage due to the high blood sugar. I also take effexor (which is sort of an anti-depressant) partly for mood swings and pre-menopausal issues, and she upped the effexor to help with my climbing stress level (due to all the life changing news I keep getting). My cholesterol numbers were not bad - my bad cholesterol was 135 (normal people need to be below 150), but due to the high blood sugar and all the new guidelines are <100. I also read something about some potential link between the cholesterol statin meds improving MS symptoms - don't know will have to read more. My good cholesterol is low (35 and should be >50), so my Dr suggests drinking more wine. ok I can try that. She also scheduled me for an ultrasound of my thyroid. She says cysts or goiters are common and if they are soft or not solid that it is no big deal. She even has one herself.
Went for the Ultrasound, and then back to the Dr to get the results. Not good. The cyst appears to be several solid nodules. Next step another appt with another specialist - this time a surgeon to look at doing a fine needle biopsy. Met with him. He said my thyroid number were low - .63 and normal is .5 - 6.0, and in his opinion the real range should be 1.0 - 4.0. Therefore mine is a low normal or in his range a low. The numbers are a reverse of thyroid activity. So low means over active. Apparently over-active is a good sign that it is not cancer. Because of that he felt it wasn't necessary to do the needle biopsy. Instead he scheduled a thyroid uptake scan test. So the following week I went to the imaging center and swallowed a radioactive pill/capsule. The next day I went back and they did an uptake scan. Then did a contrast injection and they took pictures. I met back with the Dr the following week. Bad news this time. The nodules were cold. Apparently if you are going to have nodules you want to keep them warm. Mine were cold. Cold is bad. Cold means it could be cancer. On the good side Thyroid cancer appears to be like the only kind that is curable. So the cold nodules mean he wanted to do the biopsy. First just two biopsies of the largest node on the left. If it comes back cancer, then we will need to schedule taking the Thyroid out. If it is benign then we need to do the biopsy of the largest nodule on the right side. They don't do a local for the fine needle biopsy. The theory is that the needle is so small you hardly feel it and the injection necessary to put in the anesthetic would hurt worse than the biopsy prick. Maybe. The needles are very small. The stick isn't bad, it is when they hook up that shop vac or whatever to the needle and try to suck your entire guts out through that little tiny straw of a needle that hurts. It made me cry. I don't cry often. He did the first and I cried, he asked if it was ok to go on, like at this point I see any choice. M was with me. She is always there when I need her. I'm not sure I could be going through all this without her. I go back next week with the results of the biopsy and to see if I need surgery or another biopsy. Then more waiting.
When I look back, I'm not sure where this all begins. I have had the tingling and numbness in my feet before this year. The first time was about 2004 or 2005. It didn't last as long and we attributed it to my sleeping on a featherbed causing a pinched nerve in my back, and when I switched back to my original bed it cleared up. I've had other MS symptoms - recently (since the numbness in the feet legs) I have had the infamous MS hug - which feels like a girdle around the waist that is cinched in. I have had issues in the past where i would struggle to find the words I'm trying to say, and some other things that might or might not be MS. So I don't know how far back all of this goes, or where the path is going to lead.
This blog is just my way of trying to find my way.