nichob73

Hi Lisa, I have low blood volume using nuclear med chromium labelled test. I am 35% feel pretty bad. the red cell volume is lowest. IV Saline helped me when i trialed it but cannot get it on NHS and trying to find dr who will give it at times. EPO also would work. Florinef sometimed does not work as it can make you pee more (renin /aldosterone problem) for me. If i have the saline into vein - florinef retainds it for longer. So for me I want to try the IVsaline, EPO and Vassop to see if it helps. Cheers nicho UK

Hi, I just wanted to know anyone on IV saline how often they recieve it, how much, and what does it help the most. What is used to assess its effectivness - BP, heart rate reduction, Circulating Blood Volume results ??etc. I am trying to get some help. Thanks for helping nicho

Hi Where do you get the EPO prescribed in Scotland Peresphone - would like to try and get my life back also. Is it Vascular Disease Unit Dundee?!!

Good Luck with appointment his team are nice. I am UK but diagnosed in Montreal. Big problem for me is the hypovolemia and it is one thing that does not get measured there and i'm having a few problems as I have meds but for BP and Tachycardia but white as asheet peeing non-stop. i hope i canturn it around though soon. I just hope i can get some help with this. Keep hoping is the way forward. Any males seen doctor at the hospital. TC

Hi I am uk I need help with getting aa wheel chair. Thnaks for all the information. If in UK is it case of PCT sorting one. I am pretty lost. I am struggling i need to lie flat or sit v frequently. TC nicho

Thanks for help fellow memeber- Do you know where in Scotland will help?

Hellow everone thank for your responses and help. Just got out of NHNeurolgy today on Sat. It was pretty bad. Ben under a well known doctor in the UK for 1.5 years and not much help. Will not treat with IV saline, EPO, vassopressin etc, just left in worse condition than went in, very dehydrated they did basically nothiong just let me pee for 4 days can absorb the water. Been tellling him for 1.5 years, will not prescribe salt tablets or patassium etc, said they would kill me?!, his treatment is florinef, midodrine, beta b, if that does no work you are generally buggered. i have tried to tell him for 1.5 years that i am no better, the florinef made me urinate more and because i have not improved he sent in a therapist. After 10 mins i managed to get out of him that Dr. XYZ believs i am clincially depressed, ( a reason why drugs not helping) after 15 mins he was out and he said you are no way clincially depressed. Trust abandoned i feel I do not feel he is worth the money, he does not listen to you, always prevents you talking so you dont ask questions and you only see him for 10 mins in hospital in a five day stay. Also the docs come in like noahs arc in pairs as i told them i was not happy. The doc will not prescribe anything off-label. Anyone with help on the IV saline anywhere in UK as it helps so much, Anyother docs? Where can you get EPO in scotland? Who prescribes DDVAP in UK Florinef makes me urinate more but taking fluid via IV and florinef helped but drinking wtare does not do anything, Thaks for help but i am stuck in bed and house 95% of time. its a pain. Anyone help would be good

Hi, I experience severe fatigue also debilitating, weakness also. I put it down in my opinion just lack of fluid, if you think how much IVs help you. If you have more volume continously which we obviously do not have your heart cannoy function properly your brain cannot function your cells cannot function. Do you have any mitochondrial problems. Also I have had people say the weakness may be enteroviral and i have no treatment May i ask a question were you reasonably red faced before your illness and now pale? I have noticed there is not a pale face icon

Hi new member thank you sunfish for help its difficult.. anyone have cognitive problems with their PoTS I have bad hypovolemia 35% plasma and 33 red cell which was done in Canada. I live in UK so I for the last 4 years i have had no help. Anyone know any UK docs who would help with IV Saline, epo, vassopressin savvy. Docs nearly killed me more recently. I pass 2 litres of urine in 8 hr without eat or drink. The docs were unable to draw blood from arms, instead were drawing thin air, then pumping saline and still drwaing thin air. Out of the hospital i went with "there is nothing physically wrong with you". I cannot stand up you moron...... Not much help from the National neurology and neurosurgery hospital in UK appears no good for PoTs. For two years i have been telling them i pass more urine and than fluid intake, cannot stop urinating. Have tried IV Salie at a private "underground"doc but at ?130 ($260) i cannot afford it. I also cannot make it to the p[lace. I need it done at home. Anyone know of UK homehelp for infusion. Anyone have infusaport or such.. It helps alot.. Any help would be grateful Thanks for your help and courage to all.