NEWSLETTER no 37 28.07.2005

 Dear Friends,

We received apologies from Tracy and Matthew because of work, Betty who had another commitment and Jenny and Dave who are on holiday.

Janet gave us some correspondence from Geoff Treglown including a Newsletter from the Brain and Spine Foundation. If anyone wants a copy let her know please.

Verna and Gary from Wolverhampton joined us and Verna was anxious to discuss her problems with the friends present. She started off getting sensations in the leg and foot. This developed quickly over other limbs and also caused other control problems. Verna was sent to an Orthopaedic Consultant who gave her exercises to do, and said if necessary he would give her Botox injections.

She very quickly got worse and went into New Cross Hospital for an MRI scan. Dr. Corston, Neurologist, saw her and said it was inflammation of her nervous system.

Jeanette, the pain Sister from the Princess Royal Hospital arrived at this point and decided to talk to the individual friends, and then talk about any new drugs available……………………

Ben and Colin are not taking drugs for pain but for muscle spasms.

Carol is taking gabapentin but would like something else.|Jeanette said she would talk about new drugs, but that Carol would have to discuss any change with her GP of course.

Kelvin is not on pain killers but sometimes takes voltarol.

Gordon is on lyrica but still gets pain. Jeanette suggested he could discuss with his GP a possible increase in dosage.

Mike is not on pain killers at present and is awaiting an appointment with Dr. Carley. Jeanette will look into this for him.

Sandy is now on lyrica and Jeanette discussed this with her.

Marcia is taking tegratol and codidramol.

Verna is taking gabapentin but this makes her drowsy. Jeanette had a chat with her about this.

Maureen is taking nortriptaline but is not getting much relief, and is often very sleepy.

Jean doesn’t take much as she already has drugs for other problems.

Jeanette then discussed in depth the use of lyrica, which is now being used with generally great success. As she said, it doesn’t suit everyone, but by getting individual dosages correct it is a very helpful drug.

She also mentioned transtec (morphine based), which can be very useful. Also fentanyl patches.

We had our great selection of tea and cakes provided by Colin and Glenys with help from Jan. Thank you all very much.

Whilst we had our break Jeanette talked to individuals about their concerns, made a few suggestions but emphasised they must discuss their concerns etc . with their GP’s and Consultants.

There is a programme starting at the Salvation Army Centre in Oakengates for ‘Expert Patients Pain Control’.

The 7 week course will start on Wednesday 3l.8.05 from lp.m. to 3.30p.m. – NO CHARGE. Should you wish to attend this course please ring Eve on 0l952 253902 by the l9.8.05 (answerphone). She will then phone the numbers to Sharon Smith at Shrewsbury.

They can only take l6 people per course and it is open to anyone, so let us hope all our people can be included. Eve will let you know either way as soon after 23 rd August as possible.

We hope any of our friends in constant pain will want to go, as learning new ways of coping, we understand, can be invaluable.

Our next meeting will be held on Thursday, 20 th OCTOBER 2005 at the same venue.

Our very best wishes to you all,

DISCLAIMER;

The Transverse Myelitis Association 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.