NEWSLETTER no 38 20.10.2005

Dear Friends,

The people who couldn’t join us were Betty, Kelvin and Margaret, Dave and Jenny, who all sent their regrets.

We went over the minutes of the last meeting and Carol told us that she saw her G.P. and he agreed she go on to Lyrica medication. She has some side effects but is still settling in with them and determined to continue.

The Patients Pain Control sessions at the Salvation Army Centre were not successful for Gordon and Mike - they were not helped at all.

Janet read out some Newsletters received. One regarding the John Hopkin Clinic. Another regarding stem cell research said the media have “hyped up” the possibilities of success in this area and at present it is not supported by facts or proof. Another Newsletter regarding Goat Serum says exactly the same thing and recommends caution by us all. It’s definitely a “wait and see” situation.

We were joined by five new friends, three of whom are suffering the effects of T.M. - Anna and Kate live locally and Janet lives at Burton-on-Trent.

Anna had some symptoms after the birth of her first child by losing some feeling in lower limbs. Her second child born 22 months later, left her again with gradual loss of feeling in the lower trunk. She had difficulty convincing her GP of her problems. A long 6-8 months later, 2 MRI scans, lumbar punctures etc., she was finally diagnosed with TM. Anna does not get any follow up from the local hospital. She uses the following vitamins and supplements: vitamin Bl2, folic acid combined with vitamin D and cod liver oil, takes no other medication and finds they DO help her. Anna also uses ice packs for 5 minutes to help pain in her lower spine - they are covered with a towel and NOT put directly onto the skin. She does feel they help to contain the pain.

Kate developed TM in January 2005. The bottoms of her feet were totally numb and it moved further up her legs. As an emergency she was seen by the ShropDoc GP and diagnosed with depression and medication was given. She saw her own GP who made an appointment with the Neurologist at the PRH, but by this time the numbness had progressed towards her upper trunk. She was admitted to the PRH, saw Dr. Newman and scans were done. She had a lumbar puncture and was given steroid tablets, diagnosed with inflammation on the spine and eventually sent home. She had a relapse and saw a neurologist again, and after telephone calls was taken back into hospital and put on a steroid drip for a few days. Later, after more telephoning and having seen a neurologist again, she is now awaiting some physio.

Janet from Burton-on –Trent started her experience with TM with restless legs. She saw a doctor, but it gradually got worse, she collapsed and her family got her to bed. The weekend doctor was contacted who advised her to go to AandE, and she was taken into the orthopaedic ward where she had several tests. She was transferred to Nottingham, had more tests, and was given painkillers which she couldn’t take as she was too ill, she caught hospital infections, couldn’t eat and got other problems as well. Janet finally had a lumbar puncture and blood tests done. After more delay she was eventually diagnosed with TM.

She was transferred to Kings Lodge in Derby. Intensive physio has eventually helped her to walk on elbow crutches, but altogether she was in hospital over 3 months, having gone through more experiences than a lot of our friends. Janet is now awaiting regular physio.

It was decided we would send a donation of £20 to the UK Transverse Myelitis Society.

We all also decided to hold a lunch at the Horseshoes Pub before the April meeting, the date and time will be notified in the next Newsletter.

We all enjoyed our break with Colin and Glenys’s treat of great cakes and Rita’s drinks - many thanks to you all.

Our best wishes to everyone and we hope to see you at our next meeting on THURSDAY 2 nd FEBRUARY 2006 at the same venue.

An early Happy Christmas and healthy Happy New Year wishes to everyone.

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.