Iris,
I found that there are several different FB pages, one is "people living with transverse myelitis" that seemed to be very helpful. You might look at that one ;-) Glad you are finding support!
Cheers!
Sam
On Jan 26, 2015 11:33 AM, Iris Whiddett i.whidd...@icloud.com wrote:Thanks Sam, you are so right about this Group. Ive tried facebook but I dont feel it compares to the help and support and useful information always to be found here. Iris UKSent from my iPadOn 26 Jan 2015, at 14:47, luthyen@comcast.net wrote:Friends, I too have had TM, but converted to MS as perhaps 1 in 3 will. Some of you may remember me- Sam from Boston.Remember that MS and TM are cousins, and on the same demyelinization spectrum. TM can be thought of as being MS of the spinal cord. If you have a symptom that you cant explain or understand, or that you need to know about, look up the symptoms and occurrences of MS and you likely will find it there. The banding, the fatigue, the depression, the heat and cold sensitivities, are all common to MS and are discussed in articles about MS. Medications that are used to treat MS are also frequently used to treat Transfers Myelitis. You also will find resources and explanations here: Google and join the Transverse Myelitis Association:http://m.myelitis.org/?url="">Here you will find tremendous resources and support for you, and professional information for your physician. Maintain your hope! If you look for them, you will find that there are always positive things in your life, starting with the people on this mail string, who are here 24hrs per day to support you.Sam from Boston-Original Message-From: suerdlagpunga@gmail.comTo: i.whiddett@icloud.comCc: TMIC-LIST@eskimo.net,vasso9.s@gmail.comSent: 2015-01-26 09:17:03 GMTSubject: Re: [TMIC] Unidentified subject!Friends,I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis.I have cracked a vertebrae—L2—and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I don’t sleep more than about 45 minutes at a time.My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Dr’s office every 6 months, for bone health. It is very pricy and the copay is stiff.Has anyone had experience taking any kind of osteo medicine, and what were the side effects?Thanks,Dalton
Dalton GarisFlushing, QueensNew York, USA(718) 838-0437
On Jan 26, 2015, at 2:34, Iris Whiddett i.whiddett@icloud.com wrote:Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding.Iris UKSent from my iPadOn 26 Jan 2015, at 00:25, Betty Shaffer vasso9.s@gmail.com wrote:I, too, have banding. When I asked the neurologist about it, he asked, whats that?I tried to explain it to him.Sent from my iPadOn Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whiddett@icloud.com wrote:Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed.RegardsIris UKSent from my iPad
