Concerned mother

Worried about my daughter and advice on how we can make sure doctors do not let her down this time. My daughter is 32 years old she fell down stairs december and went to hospital to get checked out. They did xray on back said no damage but said got ostosporosis very bad on legs and back and that she would be in a wheelchair by age 35. She had a lot of surgery on both legs when she a child up to age of 19 but had been told that as she got older high chance of geting this or something simular. She was gutted and went to see her gp and told him what she had been told several days earlier. He said hospital should not have told her this without tests.He then examined her and was shocked at how bad her legs were. Aranged blood test and scan. The ostosporsis came back inconclusive. He then aranged for her to se a nuro specilist urgently. Appointment canceled twice. She went to see him last week. Both legs very weak and loss of sensation and tremmers. Dropped foot, his words were foot gone to late for splinting or phisio. Both hands tremmers. Said she not got ostosporosis or arthoritis. Not trapped nerve as if this was case wouldnt be both legs. Said deffinetly nurological. She has to use brace on leg and crutches to avoide falling. He aranging nerve test and spinal tap and would disguss treatment after these done. When specilist said it nurological been doing reserch on net myself and symptoms do resemble ms. But for her legs to be as bad as they are and the tremmers surgests she has had condition for several years.

Four years ago she was very ill over a couple of weeks she went worse and worse. We became very conserned when she had been unable to get out of bed for two days needed support to sit up. go toilet ect. Shaking, unsteady.Then her leg went into a spasam, burning numness ect and pain was excruciating. We took her to dr as thought it could be a blood clot in leg as she had one few years earlier in leg and is Vleiden possertive. Taken to hospital no blood clot leg been in spasam several hours that point. Next day leg still in spasam still unable to move without help. Gave her very big dose of steroids as said could be infection. Few hours later went to visit she much better able to sit up spasam in leg gone she looked better than she had in a couple weeks. Shortly after we left she collapsed Dr said she got diabetis. Put on insolin. Said she had got infection pancris couldnt cope that was why she so ill and steroids was enough to tip ballance and pancrias stopped working alltogether. Said she proberbly had problems with diabetis for several years as in the past she had had eppisodes of feeling ill,exausion,legs and arms would go week and heavy and sometimes shake. Pancrias started working several weeks later and she came off insolin. But she was still having eppisodes some days very bad. She would describe it as limbs heavy and as if they moved in slow motion. Her legs would shake and somtimes hands. She couldnt move without help would just sleep for hours and on one occasion it lasted two days. She couldnt even test her own sugger levels we had to do it but it was always fine. She new somthing was not right and so did we. When she went to diabetis clinic and to see doctors they wouldnt listen to her insisted her sugar levels fine nothing wrong. I went to se the diabetis dr with her because she said they not listening to her. I explained how she had been and it was not normal. If not her suggar levels then somthing else causing it. Dr wouldnt listen to me ither. I was demanding they did more tests because somthing very wrong. Dr not polite at all he as good as said she imajining symptons it was all in her head. My daughter got letter several days later it was not a nice one . It said nothing wrong with her and that she and her mother were overreacting. They discharged her saying if she got a bad infection in future and needed to go on steroids then she would need to take insolin. Also if she got pregnant. After a few months she improved although still had eppisodes but not as severe. Her legs deterioting over the last couple years to the extent having to wear knee brace and use crutch to walk some days. Somtimes for weeks at a time just to stop her falling over. Inbetween she would be fine except her legs were geting weaker. She wouldnt go to see he gp because she said whats the point he will send her to another doctor and it will be more of the same they not beleive her. She was always falling somtimes badly and would go to hospital if she thought she had damaged somthing. Has fractured her foot. leg. discolated knee over the last four years. She has not been able to put one foot on the floor for around 18 months and walks on tiptoe with that leg.After checking on internet about her symptoms she deffinetly shows signs of ms and thinking back I think if it is that then she has had it for around 8 to 10 years.

She does not trust any doctor because they have let her down for many years. When ten she fell over and broke leg. When she started having problems with mobility and legs and knee giving way over the next three years I would take her dr they would refer her to phisio because on discharge letter they said ligament and muscle was damaged and when knee got week just reffer her phisio. They did this for around 3 to four years untill leg went alltogether .turned out they left skrew in a growth plate and bone grew abnormaly. She had to have masive reconstructive surgery to realine and fix bone but unable to do it untill she had finished growing. She was in wheelchair or crutches for several years untill surgery fixed problem. Then had to have surgery on good leg because when they realined bad leg the good leg was misalined due to compersating for bad leg over the years.

If it turns out she has got ms or somthing like that then treatment is steroids.If she has to take them then she will have to go on insolin. This will mean having to go to diobetic clinic, even more doctors. She didnt even want to go to se specilist last week and a friend had to go with her to make sure she went. She is allready saying how can she trust or beleive him he going to be like all other dr she has seen since she ten, say one thing and turns out to be somthing else. She has no trust in doctors wouldnt even go to gp over the last 12 to 18 months although everyone was telling her that somthing was seriously wrong. She wouldnt have even gone to see him now if she had not fallen down stairs and the dr at hospital had not said what he did. I think she will go for the tests and to see specilist for results but after that not sure she will go to see him again as her mistrust in all doctors and medical personel is severe. I av a feeling she will not beleive anything he says and just carry on the way she has been doing.

Hello and welcome :slight_smile:

What an awful lot your daughter has had to contend with over the years :frowning:

As soon as I saw the words “blood clot” my mind jumped to Hughes Syndrome. Does your daughter get headaches? If she does, then I strongly suggest that you ask her GP to run the blood tests for Hughes. It could cause many of your daughter’s symptoms.

Is the neuro sending your daughter for MRI scans of her brain and spine? Nerve tests and lumbar punctures/spinal taps are all very well, but MRI is very important.

Steroids are only used in MS treatment for acute relapses in the UK. They can reduce the inflammation in the nervous system and speed up the time to recovery. However, they do not help older, pre-relapse symptoms and they are not effective for all types of MS. They do not actually treat MS itself so someone who never has steroids is likely to have no worse MS than someone who has steroids regularly - so IF your daughter has MS, there is no need for her to have steroids.

It sounds like your daughter’s medical history is very complicated - this often causes problems for specialists as they do rather tend to think only about their own field and not consider alternatives. Hopefully things will start moving now she’s seeing a neurologist, but do make sure that he knows your daughter’s full medical history, including all the diabetes stuff - that may be an important clue to what’s going on.

As far as her distrust of doctors goes, I’m afraid that all I can suggest is to make sure she goes to all the appointments and, hopefully, if she gets a diagnosis that she can see fits with her own symptoms and experiences, she will start to have faith.

Do make sure that she is making the most of local services, e.g. physio, occupational health, etc. We don’t need a diagnosis to get support from therapists. And push her GP for any meds that might help with her symptoms.

I really hope you get some answers soon. It must be heartbreaking having to watch this happen and not be able to do very much about it :frowning:

Karen x

Thanks very much for your reply and for reading such a long post. Yes she has had a mri scan of spine and hips. she awaiting apointment for nerve test. After this test done they said will be geting her in for spinal tap. Then back to unit to disgus results with nuro. Her gp said her legs look to bad for phisio at the moment. Was a occupational theripist and physio theropist there during medical with the nuro. After medical they asked her to have cup of tea. One of them did say we will make u one today but next time u will have to make your own and first thing we will be doing is geting u on the bars and se if we can get that foot on the floor. I am going to google Huges Syndrome now. Thanks again x

She needs a brain MRI too.