NEWSLETTER FROM TELFORD GROUP (ENGLAND) no 33 22.07.04

Dear friends,

We held a meeting with l6 friends present which was really appreciated.

Ben is now out of hospital after suffering kidney stones and improving - we all send him our best wishes.

Diana sent her apologies, she was busy, but has not yet heard anything since her X-rays.

Colin is waiting to go to Shrewsbury for help with his walking. His cholesterol is high and with a change of diet has lost 5lbs in 2 weeks - well done!

His wife Glenys has joined him on the new lifestyle and is doing well.

Tracy has a neurologist reviewing her records to decide whether the NHS has a case to answer. This is costing her a lot of money, but hopefully he will find for her and we hope by the next meeting she has some favourable news. She has joined Weightwatchers and lost one stone so far - well done to you.

Maureen feels slightly better now they have a car again, not so fatigued.

Jean goes tomorrow on the 23 rd for her check and we wish her well with that.

Mike has started his physio with Janet Portman at the PRH twice a week. She is working him hard - there is an improvement in his walking, but he is still in great pain.

Marcia has had gastric problems. Her doctor found a Vitamin Bl2 deficiency and there has been some improvement.

Gordon told us he had been using morphine patches for about two months. When first using them they took the edge off the pain and discomfort, but now they don’t seem to make any difference. He is due to attend the Pain Clinic at the PRH in August, and will discuss them with Dr. Carley.

Janet then told us of her 2day trip to stay with Chris Clancey in Hertfordshire and to attend the setting up of a new TM Group at Wembley in London.

Out of about 90 invitations only about 20 attended the hotel where the meeting was held. They have some financial support and have decided to set up a Charity.

They have lots of plans - their next meeting is scheduled for September and hopefully we shall receive news from them either by Newsletter or via any Website they set up.

Janet then told us about talking to Margaret Shearer from Scotland who has formed a Self Help Group which meets every other month. They hold their meetings on a Saturday, so are able to use a conference room of the Neuro unit at her local hospital.

We will send her our newsletter, and ask her to let us have any interesting news from her meetings.

Janet has received a letter from America concerning a symposium in Baltimore, reference amongst other things the Myelin Project - more hopefully later.

Chris Clancey sent Janet a leaflet on a new drug called Aimspro based on goat serum!

This eases the symptoms of MS, which are very similar to ours - can it work for us, watch this space!

Amytriptaline can sometimes cause tiredness during the day, so Margaret from Scotland takes this only at night. She has changed her day medication to Nortriptaline which is similar minus the sleeping content.

Colin and Betty both have spasms and find Zanaflex invaluable in helping to control this.

During a very enjoyable meeting our afternoon break was highlighted by Glenys and Colin’s baking, including some new cakes to try, and Rita’s invaluable contribution with drinks. We are so fortunate in this from our members - it makes the afternoon.

Our next meeting will be held at 2pm on Thursday 28 th October at the same venue