Dr's Appointment Didn't go so Well... Actually a Disaster
Posted Jul 22 2009 1:26pm
I went for my appointment with my regular Dr. and it didn't go as well as I had hoped for. Why do Dr's have to be so brutally honest? I had my exam and we talked about the symptoms that I have had. And then we did some talking. Actually She talked and I cried.
I may not like what she had to say but I did find out some interesting stuff about MS. So I will share with you my appointment. ( You know me...I let the personal info out to help others)
First off she wanted me to know that 80% of MS'ers do not have or will not progress to the progressive phase. Good News! Except she does not believe I am one of those 80%. She is seeing progression. She did say that some of my original symptoms when first diagnosed are not as bad. However, there are many more symptoms that I have gained and also have progressed. She did explain that taking the shots are extremely important. They are the only thing I have going for me to help with the exacerbations and permanent damage. As for medications... Medications that we are given to help treat symptoms of MS are not always going to work nor will they take the symptoms away. If they do take the symptoms away or lessen the symptoms this most times is only going to be temporary. I am at the highest dosages for almost all my medications. Not Good! She explained that she has reached her ability to help with any more medications for my symptoms. She did say that the Neurologist might have a few more up his sleeve but probably not much more. As for my Intestinal Shut Down... I explained that with using the natural products I have been able to keep things going and also taking out the dairy seemed to help some. I asked about lactose intolerance. Her answer was that MS can cause lactose intolerance along with other reasons for intestinal shut down. Right now if it helps to take the dairy out of my system and take the natural products then keep doing it. But in reality, There will come a time that the lactose intolerance will lead to another intolerance and then another and then another. Taking the natural products if they help is a good thing but eventually they may not help either. She said that when I went to the Gastro Doctor he was stumped as well and that I need to prepare myself that there could come a day that I may need to have a tube inserted to feed myself so that my body will absorb and release what is needed. She did say that my balance has improved some and I told her about the Wii and she was happy about that however, she followed up with the fact that my strength tests were worse. You all know what I mean by strength tests. Resist as I pull or push. I could tell already that I didn't do so hot with that. She also agreed with what the Neurologist had told me a year ago and that within time I will probably end up in a wheel chair. By this point as you can imagine I was a happy person.
Then came the real kicker!!! She said that I have accepted some parts of being diagnosed with MS but I really haven't accepted the important parts of being diagnosed with MS. She called it Denial. I like to think that the Doctors are wrong and I will beat this and I will live a long life with a lot of pains. She said "Tara, I think you need to go for counseling because the reality of this disease is that it is a crippling and debilitating disease and can be fatal" Ok. This is when the tears turned into full blown crying. She also said that going to support groups is good. I told her I don't like them because they are to real to me. I don't want to see the possibilities of what this stupid disease can do. Her answer was then that is where you are in denial. You need to see what can happen so you can be prepared.
I quickly responded. I don't want to see what the possibilities are and I don't want to prepare for any of this. I want you Doctors to tell me that this is a nightmare or a mistake or even tell me yes, you have MS but we will be able to control it. And the answer she gave is... None of us Doctors can tell you this. She told me that she just buried her cousin age 42 last year from MS. She had it for 20 years and the last 10 years she was in a wheel chair and then became worse and worse. Ok. So at this point I am crying very hard and responded with "Why do Doctors say things like this? If you don't give encouragement or signs of hope then what do I have to hold on to? To keep me fighting and believing that I can win this and live the life I have planned. I am not stupid, I know that there are going to be changes that I will have to live with whether I like them or not.
She is changing some of my medications and is going to do a complete blood work up which I have to go in and have done very soon. She said that will give some info and then I need to go see the Neuro and get my yearly MRI test. I am just so excited about all this.
But I need to point out one more thing she told me. I explained to her that I did not call the Neuro the last exacerbation because I did not want to have the steroid treatment. Her answer to this was... "Tara, by not going through the steroid treatment can actually help progress the MS. Steroid treatments are to shut down the immune system causing less permanent damage and destruction. By choosing not to do the steroids I am choosing to let the exacerbation last longer and more damage to be done." In her opinion she said no matter what if you are having an exacerbation I should always call and let the Neuro know and if Steroids are recommended then it is better for you to do them. Causing less damage. Less Damage = Less progression.
And I will admit that she did get on me this time about the smoking. She said "Tara, smoking is also helping this disease to progress". I asked her if she had been reading my blogs? And of course I laughed through my tears and she said no. I explained and she said it is just the truth. I told her that I was in my phase 1 "Thinking Phase" and I will work towards "Phase 2" She said she wants to see me in 2-3 months and hopes I am in phase 2-3 by then.
She also said that she knows that I push myself to the limit most times and she expressed that when you have MS. You need to listen more closely to your body. If it needs sleep then sleep, If it needs to have resting times then do it, and if it says "STOP" then stop.
I will go have my blood work done in the next few days and we will see what that comes back like. I will continue to post how my next few appointments go and also my blood work.