Well, it’s been a bit, since I updated what is now a blog of sorts. Last time you heard from me was when I had the LP and then the Blood Patch and then they didn't draw enough fluids to complete all of the lab work.
The Neuro that ordered the LP, wasn't happy and neither was my GP. But, my Neuro said from what they did get he could see no bands. So.. no Bands, no lesions on the brain. I go back to see him next week and most likely we now go to the a cervical/neck MRI.
In the meantime, I had to go back to my ophthalmologist. He is keeping a watch on my Optic Neuritis and decided to send me to a Neurologist Eye Specialist. So it’s off to another Neuro next week (my 4rth or 5th Neuro)
I also have to see my GP next week.
Now during all of this I was going down hill, very fast. Depression and the ability to do anything at all was just
too much work, to painful, and laying in bed was so much easier. However, suddenly at out of no where, my GP calls me and asks how I am doing. He hasn't seen any results from the Neuro's and wanted an update. I told him what had been going on, and I guess I was sobbing, because the next thing I know he says he will be there in 10 minutes. Sure enough 10 minutes or so later, he appeared and we talked while he kind of checked me out.
He said " the darn Neuro's and Specialists are busting their butts to find out the mystery that surrounds your condition, trying to find that key that will confirm MS or something else.....but while doing so.....they forgot
you and your symptoms. You can't function and frankly I am worried about your mental state. Therefore,
I will start you on Provigil and we will make some modifications to your other meds.
2 days later, I went from about 5% of my normal self to 60-70%. It was amazing how much better I felt. My mind was clear again, I had energy and the rest of the symptoms had calmed down. Not has much tingling, not as much pain,etc etc. No, I wasn't 100 % but I could function. Some days are still better than others, and like I said, the symptoms are not gone, just not so severe unless I do the following:
I found out a big lesson.
Major Stress in my case is like a switch. Just 3 days ago, a major problem happened with one of my kids and
after dealing with it for about 5-6 hours, I could barely move. My body was going crazy with pain, numbness and tingles. I could barely see out of the problem eye and generally set me back to oblivion. It took another
two days to get back to my pre-major stress day. Now I am back to work, and by 5, I am tired but not dead.....and by nine I am in bed. And if I have to work on a keyboard a lot during the day, I can barely move my fingers, and my arms are vibrators by the end of the day, and even though the rest of symptoms calmed down, they ARE still there and some get worse off and on during the day. But in general I am better suited to deal with it all. And frankly like before, I have good days and I have better days depending on stress, physical activity, sleep etc. And I am learning as I did with the Major Stress kickoff, of what not to do, and that I can control the effects and symptoms ....at least to some degree. For instance, I use to take the stairs everywhere in the building. Now, if I do this too many times, my legs get pretty wobbly and I start feeling an increase in most all the symptoms. So, I only do this once or twice or not at all, and take the elevator the rest of time. I used to go with co-workers to lunch, and most of time we would walk to the destination, but where I live, it is in the middle 90's outside. I only go with them once a week or twice at the most. I do feel the effects of heat, not as bad as some, but it does effect me, so I can control how much of it I can take. I can take some pain meds if pain occurs and it is more severe than a couple of excedrin can handle. I even have a anxiety med if needed.
I also learned another lesson. For you that are just limbolanders, new, wondering etc. And you start down this weird road......get your doctors to help YOU first, and find out what is wrong after. Now, there is the chance, my GP told me yesterday, (checking on me again) that if I do have MS, that this was a relapse
for the last 8-9 weeks and it is now diminishing. Whether it's that, or the meds or God himself that has made
me feel up to the fight again, up to hugging my wife and kids again and to keep going down this road until I find out the answer we are all seeking.............I don't know and don't care. But in 2 days I was reborn to humanity because one doctor took the time to think about me and what the symptoms do to us. And then had the guts to say, I don't need an answer to try some things to help you, until we figure out the problem. I don't know if they will help, but there are things we can try. Simply put, whether you have MS, or whatever, there are ways, methods, and meds that can make you feel more comfortable while they go looking for the answer to your problem. Some will work, others not, some you may have a reaction to, but something out there will help. A good doctor will try, monitor for results and your safety, to help you and your symptoms while they put you through and wait for, tests, and other research. And I am not speaking of just meds.
I recieved this many weeks ago, when the world was falling apart around me. I can now say, that nothing I have read or been told has been more correct or better advised. I didn't know it at the time, but it was about to become my story.
"Hang in there Mike..... you are not alone! I know exactly how you feel! I am the VP for a major company and it seems as if I have to work 3 times as hard than I used to. Many times my thoughts are scattered, my typing and spelling is terrible now, my match skills are really bad, and it is really difficult at times to find the right words when I am dealing with a customer or an employee. I appear sometimes, or in my own mind, as a person with Mental Retardation. My memory really stinks sometimes too. It can be really embarrassing! My fuse is really short at times . It's like I am unable to process too much information at once and snap. Unstable with this disease, is not just in your walk/gate, it happens in overload to your emotions and thinking skills....... much less the physical part of all of it.
I am starting to learn how to cope with situations. I make lists to help me remember, leave myself voice mails, and pace myself. I find that it helps to visualize certain tasks or situations in my head before doing them. I suffered in limboland for several years before "coming out of the closet" after my diagnosis. My co-workers were very understanding and it was a tremendous relief to get off of my shoulders. I take a Provigil every moring which has really helped with the fatigue and focus issues. It may help you to get a prescript for an anti anxiety med also. I have them for those really tough and stressful days.
Like I said earlier.....Hang in there! You will learn to compensate for your shortcomings. When it gets tough, sit back, take a deep breath, and think about what you need to do. Accept what you have, that there will be good and bad days, and with the help you don't seem to have yet, you will...like me, get on with your life. But without the meds, counseling, and support you will do a nose dive into oblivion. Even if you do not have MS, you need to overcome the fatigue and the anxiety whether it’s from pain or mental. A Neuro Specialist is not the only doctor on this earth that can prescribe stuff to help. There are meds like I said earlier that will help now, and any doctor can hand them out. Once you get some relief you will be able to think and adjust better to your new circumstances. Then when you see the Neuro Specialist or Specialists, you will be in a better place mentally and physically to deal with them and their tests. There is light at the end of the tunnel although it will turn gray at times. I do better than I did before, but like all of us with any kind of disease, we live for the day when we will be cured and will return completely, back to our pre-disease selves. Until then, we push on and let researchers and doctors that care, help us down the road.
And just to make this epic worth reading....I have a Twin. A fraternal twin. She lives almost 3000 miles from me and we go months without talking or an email. She knows nothing about what I have been going through. I received an email from her, about 3 days ago. It said " Hi Bro, I wanted to let you in on a secret, Mike (her husband) and I have been keeping from you. For the last 5 months or so I have been under investigation for MS. Yes, MS. Didn't want you and the folks to worry. I have been though the ringer and they still don't know for sure. Since they can't prove that I do, (it all has to do with MRI's and other stuff) they decided to diagnose me with Fibromyalgia. I had to finally quit my job, and apply for disability....which starts this week.
I will let you look up Fibromyalgia computer boy, but it is not life threatening. It is very uncomfortable and there are ok days and better days. I have been and will continue to see doctors concerning all of this, I guess for the rest of my life. They are still looking for MS and say it takes years sometimes. To help me, one of the Neuro's involved, has got me into seeing a shrink that helps people with these kinds of diseases to adjust and cope better. Between that and some meds, I have stabled a bit and trying to get on with my new life. So I am ok and you need not worry. Sorry to keep you in the dark but it just did not make sense to worry you while going through the process. Your nieces and nephews............."
Talk about wierd eh?
Next week will be another one of those poking and proding, question and answer and tests. I am up to the challange now. It's funny, all this started because of a simple eye exam. I never considered MS or any other option. That was one doctor's decision to pursue. 8 weeks later, and the additon of 4 Neuros, and they still are trying to prove that I have it. I don't know if I have it or not, but I now know that by letting them look and poke and prod, perhaps they will find what is wrong, whatever it may or may not be, because 60% isn't good enough.
Round 5 coming up