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Apr 7, 2012 · Idiopathic brain pain in Brain & Nervous System

So nice of you to reply. I too had a spinal tap which showed no MS, but doctors said just because it didn’t turn up then didn’t mean I wasn’t starting with it? Unfortunately I think they just havent hit upon what we have. It’s funny they told me that they had a group of women with our symptoms but no answers. I agree everybody was great at Mayo and I certainly don’t regret going there and they do keep in touch and make themselves very accessible to my doctors here. I will tell you one thing even though I have had a hysterectomy years ago they believe that estrogen patches might help pain and I believe that it does, I also take Tramadol (8) daily along with Valium and ambien and cymbalta the cymbalta helped with pain level and hydrocodon as needed, zofran to help me eat(I lost a lot of weight) no appetite. Just thought I would tell you what I was being treated with don’t know if that helps or not. I want to wish you a Happy Easter and hope you have a pain free day or least a good day. Write anytime, Linda

Apr 3, 2012 · Idiopathic brain pain in Brain & Nervous System

Just looked up mononeutritis, bells went off, I have had 1 stroke and 2TIA ‘s and have numbness, tremors and restless leg also carpal tunnel and unsteady gate, pins and needles in hands and legs, this is so strange they had suspected MS. Have they mentioned that to you ?

Apr 3, 2012 · Idiopathic brain pain in Brain & Nervous System

Thank you so much for your reply sometimes the worst is feeling like you are alone in this and no one who understands. I will look into the mononeutritis that you were diagnosed with, I had already been diagnosed with cerebellar degeneration also. I don’t know about you but it seems like a lot of stress seems to worsen my symptoms. I am 56 sorry don’t know how to put picture in will get my daughter to help me, sometimes if you can see someone it helps. I have been dealing with this for several years and went to lots of neurologists here, then eventually to mayo, I am in ky. Please feel free to post at any time it’s helps to compare and not to feel alone even if you just need to vent thats ok too.

Dec 22, 2011 · Going to Mayo in MN. without appt. in Visiting Mayo Clinic

Kathy, you have to have one dr that is your main caregiver who gets all reports who can set down and put things together. What about your primary care giver is he willing to do this if not find yourself a new one who cares. I am sorry you have had to go through this, trust me there have been times I was ready to just give up., but I have a very good internist who works with all my other Drs and he is my only one who prescribes for me.if you don’t mind tell me what you have been through and were the results maybe we can compare notes and find something on our own to help each other because I too went thru years of I don’t know what’s causing it. Hope to talk soon. Linda

Dec 21, 2011 · Going to Mayo in MN. without appt. in Visiting Mayo Clinic

Kathy, I would go it was a last resort for me and even though I didn’t get as much info on my diagnosis as I liked at least I know I did everything available out there. My condition is very rare and you may be able to find out what is wrong and how to fix it for that it’s worth it. They put you on a strict schedule from morning to night and plan on a week. But everyone is very thorough and nice, it takes awhile to get in but when they call you have to go. They also follow up with you when you get home and you can call with questions any time and they are happy to talk with you. It is an amazing place and if it can be found they will find it, in my case they gave me diagnosis but there is no cure so I live each day not knowing but knowing I tried. I wish you luck please keep in touch.

Nov 28, 2011 · Pick's Disease in Brain & Nervous System

I am really glad that you followed up with neurologist and pet scan. I was having lots of trouble forgetting things and trying to figure out the simplest chores, such as how to turn a faucet on. I also had very strange mood swings and MRI showed a lot of gray matter spots which they thought were spreading thru my brain. I have pretty bad tremors and could not do any of the neurosysch testing. Since I have not gotten any worse and MRI have not changed they have changed diagnosis but I am still not sure they really know what’s to come. Sincerely hope you and your husband all the best. Please keep in touch and let me know how he is doing.

Nov 17, 2011 · Going to Mayo in MN. without appt. in Visiting Mayo Clinic

My dr. Made appointment and sent records and it still took me months to get in. They go by who is the worst and since no other neurologists knew what to diagnose me with I had to wait for opening. Make sure you take all tests and results that you have, try to put them in order as to most recent first will save time. I was there a week.

Nov 14, 2011 · fibro in Chronic Pain

Hello I was diagnosed with fibro when no one had ever heard of it. I just had a good dr. 16 years later and a lot of other health problems, but we have found combination of Tramadol, Valium, cymbalta, lortab and more rest seems to keep under control. Trust me I rejected drugs for many years but had no life, take what helps!