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04-20-2015, 03:36 PM | #1 | ||
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Grand Magnate
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However, as I said, it is too bad that you could not still be seeing her. At least you have a podiatrist and a physical therapist who are at least familiar with CMT.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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04-20-2015, 12:55 PM | #2 | ||
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Member
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Your day yesterday sounds exactly like mine - specialist visit - concerns dismissed - back to zero. Don't know where to go from here. Feeling same as you. |
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04-20-2015, 01:25 PM | #3 | ||
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Hi there,
I am surprised they are discharging you. I am still under investigations but my neuro told me they don't discharge you. They have to see you on a regular basis for follow up to check if things are getting worse i.e. looking for large fiber involvement. They also need to keep running the same blood tests ie.ANA, HBA1C to make sure that things haven't changed or you haven't developed anything that could make the neuropathy worse. I am in Uk not sure where you are? Loulou |
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"Thanks for this!" says: | JoannaP79 (04-21-2015) |
04-20-2015, 03:34 PM | #4 | |||
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Junior Member
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The rheumatologist is convinced I don't have any condition as her one set of bloods were negative. Both have discharged me with no plan to repeat any bloods at all. I even said what about blood tests changing in the future and the Rheumy agreed they could but still no plan to re test. I am back to my GP to just try and manage symptoms, I also see a pain consultant who just books me in for a lignocaine infusion every three months. It's really crap care 😏 |
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04-20-2015, 03:37 PM | #5 | |||
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Junior Member
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I have had blood tests for pretty much anything they can think of all negative except
Low white count all the time Equivocal DSDNA but no plan to repeat this. Neg ANA Neg CRP Neg ESR Neg RA Neg anti RO and LA Plus lots of others No diabetes and low risk of it too I do have textbook sjogrens symptoms 😑 |
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04-20-2015, 03:53 PM | #6 | ||
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I have low white count all the time and low platelets. This started about the time of my symptoms. I thought it was the surgery, but has consistently been this. Blood counts were excellent prior.
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04-20-2015, 05:27 PM | #7 | ||
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Ref the shoes, I understand that. All I ever wear, ever, are one pair of trainers and a selection of 2 pairs of tracksuit bottoms. I am 35 and don't see that ever changing until the day there is a neuropathy cure. I'm off sick and have been for two months so have same worries ref work and the future. I don't know if you could try get second opinion? I'm hopeful its our right to at least access that on NHS?? |
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"Thanks for this!" says: | Billylyne5 (04-21-2015) |
04-20-2015, 05:43 PM | #8 | |||
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Magnate
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Billylyne,
Just thought of a great way to save the NHS millions - get rid of all the arrogant, uncaring or downright bad Neuros. I feel for you. Dave.
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You and I are yesterday's answers, The earth of the past come to flesh, Eroded by Time's rivers To the shapes we now possess. The Sage - Emerson, Lake & Palmer. |
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"Thanks for this!" says: | St George 2013 (04-20-2015) |
04-21-2015, 02:30 PM | #9 | |||
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I have been discharged by three neuros since there are no more tests, my diagnosis is confirmed and there is no cure or treatment. My PCP prescribes meds for the symptoms and well, that's about it. Now I wait and I wait for new treatments to come to market. I sure wish they would hurry.
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"Thanks for this!" says: | canagirl (04-21-2015), echoes long ago (04-21-2015) |
04-21-2015, 02:34 PM | #10 | ||
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Member
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It's so sad that they just don't care. I have been discharged by three neuros b/c there's "nothing wrong" with me. After 4 neuros this last one is doing a skin biopsy. I got to this 4th one after the 3rd one said I have neuropathic pain but since emg and mri is normal I don't have anything wrong. But sent me for another opinion at least. The first two just said "see you later" |
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"Thanks for this!" says: | beatle (04-21-2015) |
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