Re: I'm back/ Damron

[Guest guest]

Welcome back; prepare yourself for the MANY responses that you are likely to get!

Love,

n Rojas5915@...

I'm back/headaches

Well, everyone, it's been a few months since I have posted here, but I periodically check in and sift through some of the posts. I had a difficult spell where I was angry about the MS and the circumstances involving everything around it, so I went through a period of time where I pretended I didn't have it, and that included stopping all meds, not going to Dr. appts, and sadly, not contributing to this group. I pretended and convinced myself that my symptoms were related to something other than MS & all kinds of crazy things. But, I'm slowly coming back to reality. I am trying to make ammends with myself & have re-scheduled all my appointments I missed, started back on *some* of my meds (not all, stopped Avonex and will not go back on any of the ABC drugs at this point) and I'm hoping to be welcomed back to this wonderful, supportive group of loving people I consider friends. I just felt like at one point everything in my life and every move i made was related to MS, and I got sick and tired of it. I'm trying to learn how to cope with everything MS and not allow it or feel like I'm allowing it to control every aspect of my life. Now for a little update, I just got back from a trip to my neuro (a 5 hour trip to UVA)and I don't think I done so well on my neurological exam, oh well. She also changed some of my meds, i had to stop baclofen due to the fact that it gave me migrains. She changed my dosing of neurontin from 600 mgs at night, to 100 mgs 4x during the day, and 300 mgs at night. I have been suffering from migrains, also, and she wrote me a script for Imitrex. I hope it works, haven't tried it yet. Also gave me phenegran (sp?) for the nausea associated with the headaches. She done bloodwork to check my b12 levels, horomone levels, thyroid and a cbc to check for infection because i've been suffering also from extreme fatigue. She wants me to see a urologist at UVA (my current uro is local) that specializes in urological disorders associated with neurological disease. One of the biggest health concerns at this point is my urological symptoms. I had the urodynamic testing done a few months back by my local urologist, and the results were not good. He said I had something called "detrussor hyporeflexia" that was moderate to severe. I keep a UTI that does not respond to antibiotics and kidney stones which I did not know could be caused by malfuntions in the urological symptoms due to neurological disorders. My local urologist does not like to give me narcotic pain killers because he says that it can slow down the urological system and make the problem worse. My current primary care physician does not like to give me pain killers becasue he's afraid i'll become addicted. So, sadly I have to get them elsewhere, because I cannot function without them due to the pain i have. Most of my pain is in my kidneys and bladder due to the several (10-15) stones i have in both kidneys, and the chronic inflamation I have in the bladder. I am so aggravated that the doctors here do not understand that I need the pain killers and i'm hoping that the new urologist will be more understanding and at least can do something to alleviate the pain so i won't need the pain killers. I can control my other pain (cramps, spasms, etc) with the neurontin and OTC meds to the point that it's tolerable, but the kidney and bladder pain incapacitates me at times. It's so frustrating. I still have not been approved for my social security disability yet. I have been turned down twice, and now have the hearing in front of the judge scheduled in a few months. Our financial situation is in the toilet, and i'm so frustrated over that, too. We just bought our new house and got settled in, and we need to finish some work on it, and don't have the money to do that, and i feel like it's my fault, because i'm not working anymore. I used to make really good money, and it's hard going from being able to do what you want, to struggling to feed your kids. My husband used to try to be supportive, but lately things haven't been so well in that area, either. We never discuss my health or anything MS. I don't even tell him anymore when I'm having a particularly "bad day" I just struggle through it alone and in silence. Which is difficult. So I really need this group to hear me whine!! LOL! Well, this was long, I just wanted to join back in the discussions, and hope to be welcomed back with open arms. OH, and about the headaches, has anyone tried the "head on" topical treatment, you know "head on apply directly to the forehead, head on apply directly to the forehead" it does not get rid of the headaches, but it does offer some relief sometimes for me, it just feels good when you have a headache. I rub it on my forehead and on my temples. There is a couple of formulas, I use the migraine formula that is in the green tube. Thanks for listening,~