New Neuro....

Well today I met with my new neurologist and she is a keeper. I like her personality...... She knows the specialist in Houston I saw and she says he has no personality...I agree. She seems to be a stright forward type person which I like to have in a doctor!



Anyway, she is running an EEG on July 21st, sometime I will have another MRI of the lumbar region on my back, and she wants to do an MRA, and several tests called Evoked Potentials. She is also going to have some congitive evaluation done so we can get a good baseline of where I am at now, and have a comparison for the future.



Currently she gave me a few more meds (whoooopppeeeee) and says to stay on the Betaseron. She wants to follow me on this for a while. She thinks my MS is an aggressive form, but it is still classifed as Relasping Remitting MS. She wants more MRI's done but does not think my insurance will pay for some since I had some done back in May.



I am off to see the LLMD tomorrow. New Neuro thinks I do have both MS and Lyme and she wants me to keep up on the treatment with LLMD. I also have to get him to look into the Thyroid issues and talk about my blood pressure. It was 153/107 today when they checked it in the office. last night it was 104/68 which is (low) normal for me......don't know what today was about!

She is also talking about a treatment called IVIg. I think she will talk more about that after I get through all these tests mentioned above.

Day 2 with Acthar Gel

I did my 2nd injection of Acthar gel today and it burned a little. I did it in the left thigh today and that one is never numb so it was a little more painful, but still nothing too severe. 5 more shots to go and this treatment will be done.

I have had a pretty busy day and I have felt very good for most of it. I am getting a little tired right now and may need a short nap soon. All in all though the past 2 days have been good ones!!

I should get the Betaseron in the mail tomorrow and when the nurse comes to train me on it, I will get started on that every other day.

I have another neuro appointment with a new doctor on the 26th and if it goes well, I think I will switch to her practice. I need someone that will listen and not be wishywashy either.

Frikkin' Tired......

of being tired!!! Unfortunately it is a symptom/side effect of my diseases, and it is really kicking my butt here lately. I MUST take a nap every day or I cannot keep my eyes open. I love to nap, don't get me wrong, but I also want to be able to get out of the house and do stuff with the kids!!

Today I got on a coughing spell (still trying to clear the reminants of the bronchitis) and hacked all day almost. My throat is sore and scratchy and hoarse now. I thought if it got any worse I was going to be heading to the ER. I got to the point where Iwas gasping for air and could not get a good breath. Not Fun!!!

I received the Acthar today in a cooler delivered by FedEx. I have all the stuff I need except the training. Guess I will call on that tomorrow. I also did not hear about the Betaseron yet......

I did get a huge box of supplements today I had ordered last week. Kinda like Christmas with all the packages coming, just wished it was someting more fun to open!!

Weekend.....

It has been a good weekend. It was such a long week and I was really worn down. I went and had a very relaxing massage on Friday at Massage Envy in Frisco, then went toThe Cure on Friday night. My body is now hurting because all I did this weekend, but it was all good.

I go to see the neuro tomorrow to get my Betaseron started. I finally had a small teary breakdown one day last week when ken came home from work. I do not think it was the diagnosis in as much as the confusion over the dual diagnosis(MS & Lyme) and treatment since they are contradictive to each other.

CONFUSION!!

So, I fly to Houston today to see the MS Specialist that is supposed to know about Lyme. He started in on the "no lyme in Texas" spiel. Frustrating.......

He says all he sees is pointing to MS.....he looks at the Igenex reports and says there is not enough there to consider Lyme, that I needed to have the CSF checked for Lyme titer, which had never been done(so I/we thought); he also said the MRI's are showing him seriously active MS lesions (LLMD says he is seeing NOTHING but Lyme, no MS). I got home and read up on some things and spoke to the local neuro and he told me he did have the b Lyme checked on the CSF and it was negative(want to talk that over with the LLMD). I found a site today that had some info I think is interesting. It also points more towards a definite MS diagnosis.

I thought I may have found a local neuro that used to be a Lyme specialist who I could run some of this by for possible help or direction, but I do not know if she will see me. Waiting, in limbo.....

Also called the LLMD also today to see what his thought was on the CFS being nefgative and the aforementioned site info as well. Still waiting on him to call back as well. Limbo......again......

I do not want a definite diagnosis of anything debilitating, but I just want to know what the heck my body is doing.......it is so frustrating to be caught between 2 diseases that have no 100% diagnositic tests to tell you what is going on. I feel pulled between 2 doctors who are routing for their specialty to be the "winner" and I am stuck in the middle of it all not knowing what to do. The LLMD says do not do steroids as it is a trigger for Lyme, and NN(new neuro) says I should start steroids right away. ON(old neuro) says I should start Avonex treatment ASAP, and NN says he thinks it is not that great and I should start Betaseron ASAP,.......what to do, what to do????