NEWSLETTER no 39      2.2.06

Dear Friends

Apologies received from Jenny and David and Ben and Jan.   We send them our best wishes.
We were joined this time by Mr. Lew Gray (London TM Society) and Ian Farmer and his wife.

Colin spoke first as he was eager to tell us bout his visit with Dr. Nightingale at Shrewsbury.
The visit was initiated by Colin to find out why his symptoms were so different to the other members.   After examination and discussion he was diagnosed as having M.S., and he is now waiting an appointment with an MS nurse.

As Ian Farmer and his wife had to leave early, he spoke to us next.
Ian developed TM 6 years ago and wanted to act as an example to others showing how well he has recovered.   He still has fatigue when under stress, has uncomfortable feelings in his legs, but otherwise is about 99% fit and has a full time job.   His phone number is 0l952 256655, and he would enjoy speaking to anyone who would like to get in touch.

Mike Edgar spoke to the Group next.
He has been referred by Dr. Carley at the Pain Clinic to Russell’s Hall Hospital, Dudley and will attend Dr. Rafael’s clinic shortly, where he may be offered a spinal implant to stimulate nerves in the lower trunk, legs etc.

We were so pleased to welcome Lew Gray, who then introduced himself to the Group.   He is the Secretary of the British T.M. Society based in London which is a registered charity.
He personally has had TM for 2l years and is now retired.   He explained how the Society was formed, its aims and purposes.   He went on to talk about the Healthcare Commission event which he attended in October 2005.   Janet thanked him on behalf of the group for travelling so far to attend our meeting.

Betty told us about the changes at the Minsterley Creamery due to its takeover by UNIQ.   Having originally thought she would have a problem with her working hours of 30 per week, we now know since the meeting, following discussions with her Union Rep. and Management she was delighted to find they are willing to accept that she cannot work a l2hour
Shift, and have offered her 4 shifts of 6 hours per week, which she feels suits her better.

Kelvin has been offered an implant which he is now considering and when he attends his appointment in April, he will be given further information to help him decide.

We then had our refreshment break with drinks provided by Rita and Glenys, accompanied by a fantastic selection of cakes courtesy of Colin and Glenys. Our sincere thanks to you all.

After the break Colin showed us a cover he has purchased to fit inside his wheelchair to prevent him getting a “numb bum”.   For further info phone 0870 234l234.

Anna put in a request for members to give her a record of what happened at the beginning of their TM experience, i.e. how they were treated by their GP, hospital doctors, and hospitals as in-patients, and the treatment they received  -  in effect a diary of treatment at all levels from when they contracted TM,  as she wants to  co-ordinate us all.
Ring her on 0l952 270987 for further information.

Jean is going to Gobowen on the l4th February concerning her osteoporosis.   (Having spoken to her since then, she was relieved to be told her condition is almost the same as two years ago.)

Tracy told Anna her story to help with the research  -  Anna was horrified at all she had been through.

Catherine said she has come off her drugs as they made her too sleepy – it was suggested she consult her GP with a view to trying Lyrica.

Maureen told us she had seen her GP regarding gross fatigue symptoms and he has diagnosed her as having Polymyalgia.   She has now gone on a course of steroids and is due to see Dr. Mike at the PRH in April.

Sandy told us she cannot tolerate TM symptoms without taking her carbamazapine, which she finds most helpful.

It was decided at the end of the meeting that we will hold a lunch at the Horseshoes on THURSDAY  27th  APRIL
meeting at l2 noon for a l2.30p.m. meal, followed by our meeting at the Parkside Centre at about 2p.m.

We hope you will all be able to join us there, and any gifts for a raffle will be greatly appreciated.

Best wishes to you all,

DISCLAIMER:  The TMA does not endorse any of the medications, treatments for products reported.   This information is intended only to keep you informed.   We strongly advise that you check any drugs or treatments mentioned with your doctor.