Neurologist appt on Tues

I have my appointment with my Neuro on Tues. This is a followup from my last brain MRI. He had said in past appointments that if this MRI shows no changes then we will just "wait and see" approach, and probably just repeat MRI in a year...

My question is this...What exactly are we waiting and seeing? I will be asking him if in his professional expertise, if he thinks I am just waiting for the inevitable? or if this could just stay at this point the rest of my life?

I have some definite good news, my LP came out ok. My cervical and thoracic MRI's came out ok and overall my memory test was Within normal limits, but I am concerned with what WAS found.

1) Brain MRI - "Most of the lesions involve deep or juxtacortical white matter. There are not very many periventricular lesions, probably less than 3." "meeting at least 2 but not definately 3 of the McDonalds criteria".

2) Advanced Cognitive Assessment (memory test) - Within normal limits, except for an abnormal score in the area of information processing speed, an area commonly affected in diseases involving white matter such as MS or microvascular disease. Second lowest score was in Executive Function, another domain commonly affected in white matter diseases.

3) The "new" bloodtest by glycominds that my neuro ordered that came up "positive" for MS. (which afterwords he told me is so new that he doesn't put alot of merit in it) But why did he run it then???? Just sayin.....

I have an upcoming appointment with my eye doctor and I will be asking questions about my eyes and the extreme worsening in my eyesight I've experienced lately.

I don't want MS, but if it looks like a good possibility that it may be heading that way, are there meds that can slow progression? He has started me on nortriptyline for my daily headaches I was having, and it has helped with the headaches, but could it also be helping to slow any progression or symptoms?

Oh so many questions, and probably not many answers, will probably walk out of there with the "wait and see" approach still...but will see, and update when I find out on Tues.

Got my blood test results....

So, I have been stalling writing this....not sure why, just don't want to say it I guess. Anyways, so last week I had got a call at work from Dr Smoot. He had received the result of my blood test. There are 3 classifications: negative, postive and strongly postive. He called personally to tell me that mine came out POSITIVE!! Yikes! He was more or less trying to encourage me to not jump to conclusions yet, that we still needed more testing, starting with the lumbar puncture. I also have to have a memory test, which I have scheduled this thursday. The lumbar puncture is scheduled for Sept 6th. I am really anxious about it. I'm trying to not think about it, but I'm more convinced that it really could be possible that I'm in the early stages of MS....we'll see...

Saw neurologist yesterday...

Ok, so saw Dr. Smoot yesterday. I explained to him how my right leg symptoms got worse for about a week or so (as written in my last blog entry). I also explained that I have a concern that I have been having a hard time word finding at times. It is subtle, I don't think anyone else notices, but I sure can tell that I have a hard time finding words at times. I asked him several questions, 1) could my brain lesions ever go away? He said no, they are like a scar. 2) asked doesn't MS involve numbness/tingling bilaterally? He said not always. Can't remember what else I asked him at this time. He still needs to rule out MS. He told me there is a new blood test that looks for MS specifically, but he uses it with all the other tests as well. So I had blood drawn for it yesterday. I need to have an LP (yikes!!!), but at least I will be able to do this in Salem. And he wants to set me up for a memory test. They will be calling me to schedule all this stuff...we'll see what comes of it.

Recent episode

Ok, so after my inital numbness/tingling sensations that sent me to ER, symptoms seem to calm down. So I did too. I had the thoracic MRI done, but hadn't heard from Dr Smoot office that I took the ol "no news is good news" attitude. Mostly because I wasn't too thrilled at the idea of having a lumbar puncture. I was feeling same ol same ol...a little better, but not worse. At least until Sunday. I took Lyss to her basketball camp, it was a very hot day, but was doing ok. Just a bit of a headache on the top of my head, so took some tylenol and it got better. I took a little nap and woke up feeling better. Went to dinner and then was watching tv, then wanted to get something in the kitchen, got up, turned on the light and then had the weirdest vision changes ever. When I would move my head, it would look like the light was flickering on my peripheral vision. Almost like a ceiling fan was going around near the light, causing me to see a light flickering image. The next morning woke up and the vision thing was better, but then I had a different problem. At work all day long I had the feeling like I was drunk. It wasn't a true dizziness or vertigo, just a wooziness. If I had drank 6 beers, it would be understandable, but I hadn't drank in several days. The next day that was better, but last few days, my right leg has been much worse. I have every sensation imaginable in my right leg. A deep aching pain at times, numbness/tingling, pins/needles, hot/cold spots, and a feeling like things are literally wiggling around rapidly inside my leg. Then it doesn't take much for my muscles to burn sooo bad. just walking up a flight of stairs kills my leg muscles..they burn and hurt like I ran a marathon or something. Also, when I walk, I think my gait is normal, but it "feels" like my right leg doesn't lift quite as high as the other at times. I have analyzed it myself, and they appear to be normal. Its just my perception that is messed up. These sensations are driving me crazy, both physically and mentally. I know that whatever is causing them, is not normal and it scares me. I called the neurologist, requesting my results but haven't heard yet. I think on monday I will be calling to report my worsening in symptoms. Today I was grocery shopping and while I was bagging up my groceries, that leg was burning sooo bad I was having a hard time standing still. I was rubbing it and moving it and trying to bear weight on the other leg, just trying to stop the burning. Now I have a left sided sciatic nerve problem, perhaps from favoring my right leg. But I'm tired of all the pain and weird sensations. I have been taking tylenol and ibuprofen daily. I am really truly scared now.
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Saw the rheumatologist....

So, i saw Dr. Goel yesterday, she thinks I have fibromyalgia. As soon as she said that, I started to tear up. I'm not even sure why...It might be my new meds?? I have been feeling not quite right since starting it. Its nortriptyline, and have been going up 10mg weekly last few weeks. But I have been feeling somewhat PMS-y. Yesterday I was feeling so emotional, and cried at everything. But, also I am kind of bummed at that fibro diagnosis. I don't want anything worse, but I hate the stigma of what that diagnosis brings with it in the medical field. There are so many medical people out there that don't believe in it. I know my symptoms are real, but also in reading about it, I have realized that fibromyalgia symptoms are almost the same as MS. I am currently going through testing to rule out MS. So I wonder, if by chance I was to be diagnosed with MS, would I have both MS and fibro? or would the MS diagnosis be INSTEAD of fibro? I'm not sure the answer to that...If it comes to it, I will be asking though, if the need comes up. I haven't heard from Dr Smoot office yet regarding results of the thoracic MRI, or about scheduling the Lumbar puncture. I'm ok with it though, beccause I am NOT looking forward to an LP. Actually scared to death of it....

So, it never ends.....

Ok, so lately I have been having alot of weird symptoms, that at the time I think "hmmm...thats weird..." but not significant enough to think much more than that, because so vague and brief...but now after last thursday, I"m begining to wonder whats up??? I have been telling my PCP that I've been having some numbness/tingling in my feet, and hands at times, we think its possible that it could be my diabetes and peripheral neuropathy, then I tell him that I feel like I"m flaring my ulcerative colitis without my typical bowel symptoms, and he wants me to discuss this with my new GI doctor (Dr. Hoda). So, I did, she wants to run a bunch more tests first (which I have done) and then discuss everything in follow up appt which is this next week. They think I may need to go back on an immunosupressant again. Then I really had a scare on Thursday!!! I was at work, rooming patients, and was having unilateral (one sided) numbness/tingling and pain in my right arm and leg....next thing I knew, I was on my way to ER in a flipping ambulance!! The ER doc consulted with a neurologist on the phone, and recommended an MRI of my head and neck. The neck MRI showed a bulging disc, but not pressing on spinal cord. Then he said the head MRI didn't show a stroke or mass, BUT (oh yes the dreaded BUT...) it was not normal. I guess I have several white matter lesions on my brain...YIKES!! To quote my MRI report....."There are scattered white matter lesions. On the right, there appear to be at least 8 and on the left there appear to be at least 13. There are really not three periventricular lesions, but there are numberous juxtacortical lesions." They recommended that I see a neurologist.....he said it could just be from my diabetes and worse case scenario could be MS (multiple sclerosis). I"m a bit concerned now....

So, I have now been trying to pinpoint some of my symptoms so I can share them with a neurologist....

*Severe fatigue ( somedays i literally come home from work and go straight to bed)

*intermittent numbness/tingling and pain in my upper and lower extremities.

*occasional feeling like I'm about to have a dizzy spell while sitting, the world will just begin to spin, but then stop after just a second or 2.

*my presbyopia has gotten significantly worse just in the last few weeks or so...along with a frequent twitching of my right upper eyelid (driving me crazy!).

*the other night I was lying watching tv on my left side, and had a sudden feeling like I could pass out, my head felt like it was tunneling in, then it stopped, then a second later, happened again...then again stopped and I felt normal again.

*my lower lip had a brief feeling like I had dental local anesthesia in it, just like I had been numbed up for a cavity.

* alot of muscle/joint aches and pains all over.

Not sure what all these symptoms mean, or even if they are significant at all, but won't hurt mentioning it. In the process of my referrals to neurologist and rheumatologist....To be continued....