two years and completely mad!!!!!!!!

[Nicky99]

Hi Everyone,

Can anyone help???

For the last two years I have been going between a Rhuemy, Neuro, Hemo consultants

I have low platelets, positive Rh factor and for the first time a positive ANA slightly elevated ESR. It all started with pluerisy, low white cell and low platelets. I now have optic pallor. My symptoms are as so many of you describe I have had times when my torso is in complete spasm for 24 hours, I have a hand tremor, muscle/joint pain and swelling, loss of strength, fever for days, sometimes protein in my urine, fatigue that comes from nowhere. I am 35 and feel so frustrated, two docs suspected MS but i have no plaques, before Christmas was sitting between SLE and rhuem arth. Then went back to the drawing board.

I am now have more tests under the neuro.


My daughter is being admitted next week for a multi consultant assessment as she presents with bowel and bladder incontinence, she has also been experiencing pain in legs and arms and swelling joints making it difficult to walk for a while maily her ankle and knee. She has also had ITP and now they think she has kidney involvement. I am so convinced there is a link between us which her hemo is investigating as she thinks the same.


Sometimes I feel so low that no one has been able to diagnose either of us, and I don't want my daughter to go through days as i do. She is only 7 and hers started with Platelets of 16 at 8 months old. Since then she has been developing more symptoms/illness by the year. At least they are looking at her now with symptoms rather than several individual illnesses. As me everything she has, has had no cause explanation. Unfortunately we were always fire fighting with her. but we have moved and the docs seem very good and the first thing they said was is there an underlying cause, which was before they new about me. So fingers crossed we can get her sorted.

Sorry for the dumping session, just don't know which way to go next I am just so frustrated and don't have the energy to deal with this sometimes.

Thanks for listening

Keep well.

[lisade]

Hi and I am sorry you are having such a tough time right now. I can not imagine how hard it is to deal with you child facing these symptoms.

I pray that now that you have moved and have new doctors they will get both of your symptoms sorted out and start treating you appropriately.

My thoughts and prayers are with you.

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Nicky, I am very sorry that you and your precious daughter
are going through all this . I wish that I could say something profound
right now, but my mind is a complete blank. Just sending the best of
good wishes and thoughts that I have.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif style_emoticons/<#EMO_DIR#>/foryou.gif

[helloos]

Hi there.

So sorry to hear this long journey with no help for either of you. I too hope that since you have moved there are better doctors in the area that will get to the bottom for both of you.

Hope that you get some answers and relief soon.

Let us know how you make out at the docs.

[Nicky99]

Thank you all so much for your kind thoughts. I hope you are all well at the moment.
I am praying next week will give some answers for my daughter!!


I also hope my blood results now point toward a diagnosis.

Does anyone know if it is normal for my ANA to only just become positive after being negative for the last two years. My platelets have remained low and my RH factor was high at first then back to normal now high again?

thnak you once again it is lovely and comforting to hear from you.


Nicky

[Lily]

Hi Nicky style_emoticons/<#EMO_DIR#>/hugbetter.gif what a terrible time you are having between your daughter and yourself. I do hope these new docs are going to get to the bottom of it and soon style_emoticons/<#EMO_DIR#>/foryou.gif

It's not uncommon for the ANA to remain negative for a while, then turn up a positive. They must have suspected that might happen to keep repeat testing it. No doubt they will test it again also, because several things can raise it, if a repeat test shows it again then it will give more credence to it. Good luck and let us know how you get along.

Do you know if they have tested some of the other things commonly found to be a problem with Lupus and associated disease? Like complement levels, other antibodies etc?

Take care,

love
Lily

[Nicky99]

Thanks Lilly,

I actually asked them to test my ANA again and my RH Factor because I have been quite bad lately and I said there must be a reason for my platelets to remain low with the hundred and one different symptoms. I sometimes feel like they think I am making it up.

About five years ago I had an esr of 56 and enlarged lymph glands every where in my body together with fatigue muscle pain and other symtpoms. They were stuck and were going to send me to an infectious diseases clinic, then it all went away. Altough I have been to see a Rheumy 4 times since then and a neuro 3 times for individual bouts of illness, then it really took a hold two years ago. I have also had a rash on the top of my arms for the last two years which gets worse sometimes but never goes away. Every time I have looked up my symptoms even five years ago it is always Lupus that shows up. They seem to agree I definately have an auto immune disease but it seems so hard to get a diagnosis and for that treatment. Sometimes when I am bad I can't even get out of bed, then other times I am fine just the normal muscle pain and a bit of tiredness.

I read this web site and can't believe so many people go through this and don't get answers for so long. I think because of my daughter as well I have such little faith in Doctors now. One of my daughters Consultants actually said sometimes there is just nothing we can do!!! She has developed allergies to all medication probably because she has been on it all her life. But to keep positive she now has new Doctors who appear to have an open mind and at their suggestion not mine have got a team together.

Sorry to rattle on but it is quite theraputic just writing down how frustrated and low I feel sometimes which isn't always easy to say to people who know you and they must be tired of hearing it I know I am!!


Anyway thank you
Keep well

Nicky

[Tracker]

<div class='quotetop'>QUOTE(Nicky99 @ Jun 8 2006, 10:06 AM) Quoted post</div><div class='quotemain'>
Thanks Lilly,

I actually asked them to test my ANA again and my RH Factor because I have been quite bad lately and I said there must be a reason for my platelets to remain low with the hundred and one different symptoms. I sometimes feel like they think I am making it up.

About five years ago I had an esr of 56 and enlarged lymph glands every where in my body together with fatigue muscle pain and other symtpoms. They were stuck and were going to send me to an infectious diseases clinic, then it all went away. Altough I have been to see a Rheumy 4 times since then and a neuro 3 times for individual bouts of illness, then it really took a hold two years ago. I have also had a rash on the top of my arms for the last two years which gets worse sometimes but never goes away. Every time I have looked up my symptoms even five years ago it is always Lupus that shows up. They seem to agree I definately have an auto immune disease but it seems so hard to get a diagnosis and for that treatment. Sometimes when I am bad I can't even get out of bed, then other times I am fine just the normal muscle pain and a bit of tiredness.

I read this web site and can't believe so many people go through this and don't get answers for so long. I think because of my daughter as well I have such little faith in Doctors now. One of my daughters Consultants actually said sometimes there is just nothing we can do!!! She has developed allergies to all medication probably because she has been on it all her life. But to keep positive she now has new Doctors who appear to have an open mind and at their suggestion not mine have got a team together.

Sorry to rattle on but it is quite theraputic just writing down how frustrated and low I feel sometimes which isn't always easy to say to people who know you and they must be tired of hearing it I know I am!!


Anyway thank you
Keep well

Nicky
[/b][/quote]


Hello Nicky,

I am sorry that you and your daughter are going through this. I cannot imagine how much more frustrating that would be..
I found that reading your tread that you and I have alot in common. I am also moving. I have had over 24 specialists in the last two years and they are all dumb founded.. Its crazy! I find like you that at least writing down our frustrations in some way helps. I wish you and your daughter all the best of luck with the doctors. It is especially hard when you lose faith in them.. I know that feeling as well. I also feel like they just think that I am crazy.. They are sending me for a neur psyc evaluation, and anymore I don't care what they say.. I feel confident from reading this forum that I am not nuts and my medical imaging has proved me to be right... I like you will not let them give up or pass it off.
Be strong..
much love
Tracker

[pauline1946]

hugs and prayers for you, and daughter.


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