Refused entry into Clinical Trial
 

Well, I had a sucky Friday! Went to the neurologist for screening for entering the clinical trial. Went through the paperwork with him, through the ECG, blood work, neuro exam (which showed further problems than I'd known about), and a walking test.
My neuro thought, during his exam, that my thyroid felt "pretty generous". He also said he needed to call the doc in charge of the study, due to the fact that my pcp had changed my thyroid prescription due to the fact that my TSH levels were low; that indicated that my medication dosage was too high. It's been going up and down the last several months.
Anyway, the nurse sent me for the MRI. I drove up to the facility, filled the paperwork and was about to be taken back when the Neuro's nurse called. The doc from the study said I can't be in it, because I have to be stable on my medications for 2 months before the first injection. I talked to the nurse on the phone, and so I said, well I'll just wait the two months then. She said, nope, the study closes to new entrants next Friday:(

I was pretty peeved, to say the least. I had to drive back up there yesterday for the nurse to check the TB test on my arm. We sat and discussed what the neuro's thinking now. He's ordering an MRI so he can see what's up, and then we will determine the treatment option best suited from there.
I asked her why he hadn't ordered one since I haven't had one since I was dxd in late '08. She told me he knows that most patients have a dollar amount cap on lifetime insurance claims, and he tries not to drain the pool, so to speak. He also knew that I was going to go into this clinical trial, which would have required lots of MRIs, which would have been free for me. That's why he has waited.
So now it's uncertain what's going to go on...I have been so depressed the last couple of days...poor DH. He has to deal with his crazy wife!!

The neuro exam showed evidence of some pretty severe ataxia...I couldn't walk one foot in front of the other (used to be able to do that even 2 years ago with no problem); I could not for the life of me walk on my heels or hop on one foot. I kept telling my legs, "Do it!!" and they replied "NO!"
Then she had me hold my hand in front of my face, protected my face, and pulled on my arm and suddenly released it, telling me not to allow my arm to move towards my face. No good...good thing she had her hand in front of my face...:rolleyes:

So I was even more depressed about that exam than being refused into the clinical study (well, maybe it was even). I want control over my body...I want this disease to go away. I am royally ******:mad:

Other than that, things are hunky-dory:rolleyes:

I'm sorry Deb but they have those guidelines to protect you. :( If they had made an exception and your thyroid was out of whack it might have caused problems for you with the combination. They also need to know if the trial meds are working (or not) so if your thyroid meds were helping you feel better with a short term adjustment, they might not know which one was responsible for the improvements.

I'm sorry about the test results too but Dr Wynn will take good care of you regardless. :hug: :hug: :hug:

Sorry Deb -- I cannot walk on my heels either, and I refuse to try to hop on one foot. :eek: It looks like the new oral med for ms should be approved by September. Maybe it will be a possibility.:hug:

:hug: Debbie :hug:

I'm so sorry that the trial didn't work out for you. MS just seems to take, take, take.

I hope you can get your thyroid meds worked out. Once you do you may see an improvement in other sx that seem to have gotten worse for you.

Sorry Deb. I got turned down for a clinical trial once too. Many years ago. I was mad because I went to so many tests and the travel was far. I thought I would be a good candidate, but no.

I just had my Thyroid done with an ultrasound again. For years I have had nodules in it and low Thyroid function. I take Synthroid, which the Endo dr just upped again. I have two dominant nodules that have grown, so I need a biopsy, again. Yikes! Third biopsy, dr wants to be sure. I have multi-nodules.

Have you had your Thyroid done by Ultrasound? I have a goiter too.

Debbie, I am sorry to hear you did not get into the clinical trial. All things happen for a reason. From your description you seemed to have progressed in disability in just the last two years. I also give your neuro credit for actually being considerate of a patient's financial and insurance situation with regards to tests. That is rare in itself.

Depressed? Okay, be depressed for just a couple of days then get on with your life. It is concerning how, after being diagnosed and symptomatic for this long, you still "wish" it would go away etc. I admit, my attitude is very much hardcore in not wishing for anything, rather evaluating my current circumstances, making a decision, and moving forward taking action in the direction I desire to accomplish. Again though, that is me and I only share that with you as an example, but by no means saying you should be like this too. We are all unique.

You are really like this though. You said, "I am really ******!" I love that attitude because when dealing with a terminal, or chronic in your case, disease, many good things come out of being ******. You got guts girl, can't deny that!

Well, take a couple of days, gather your thoughts, be grateful for where you are, gifts you've received, abilities that remain, get up and keep on going where you want to go. You are strong like that, or you wouldn't have even considered going through the evaluation for a clinical trial.

Be blessed in the day you have been given.........and go kick some *****!