Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 You're very welcome, Babs. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] RESEARCH - Methotrexate reduces cardiovascular mortality in RA patients > Hi > > Thanks for all the great information/articles > > Take Care > Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2005 Report Share Posted December 8, 2005 Thanks for responding. The doctor has started my son on IVIG he goes every 3 weeks but I am still unsure if they have a correct diagnosis. To me it seams like there is more going on, then what has been diagnosed. I am not a specialist, so I do not know for sure but he has so many issues going on. I live in Yuma, AZ it is right on the border of California and Mexico. The doctor who see's my son comes here from Tucson every 2 weeks we do not have even an Immunologist here. Whether the doctor is a specialist handling PID cases I do not know. This is the second doctor we have seen His name is doctor Uwe Manthei he seams nice but whether he is current and knowledgeable with what is correct and best for my son I am unsure. It could be he does not see very many people with PIDS. Both specialists have been in Tucson and they both have a difference of opinion one says he has Specific Antibody Deficiency the other said he had Hypogammaglobulinemia transient of Infancy but when he didn't outgrow it like he thought he would, he changed the diagnosis to CVID. This specialists name is doctor Nabeeh Lahood. Has anyone heard about these doctors or does anyone recommend someone in my area? Thanks for all your help. Babs -- Babs Babs, You wrote of your son, " . . . but if we were to have an outbreak it could be really bad for him because even after immunizations he has no resistance. I have been told that my son's body has a problem with not remembering when it comes to vaccines . ... . " and " I feel that there may be more going on then the doctor's in my small town have figured out. " If your son currently has no response at all, then you're right, it could be really bad for him. When normal B cells are stimulated by antigens (foreign bodies) they produce antibodies which fight the invaders. Some PID patients don't have normal B cells, and they require IgG supplement therapy (IVIG, SCIG) to help their body fight antigens. Other PID patients require preventative medications to assist in protecting them. Has your son been sick much? If he is around other children, he will eventually pick up their bugs, and his body may need some kind of help in fighting them off. I don't know where you live, but if you're not comfortable with your son's current doctor/s, have you considered traveling to another city/hospital where there are specialists who only deal with PIDs? Many of us in this group have seen the expert doctors who deal with immune deficient patients, and we could give recommendations if you are interested. Antipov mother to , 4 years old, X-SCID, 2 BMTS @ Duke, normal T cell function, SCIG weekly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Oh boy..I rea dyour story..I see story of my husband.. completely failed cervical sugery ruptured lumbar 2 disks and damaged nerve in cervical area..no one even wants to touch my husband nech.. he is on opiods and hydrocodone to help right now he is in bed almost crying because his lower back gave in today more than ormal he can't even walk straight I can't allow him for more pills than alloted for the day they cause insomnia so the merry go round again can't sleep - take some sleeping pills -they dont' even work anymore and the doc did not give him any REAL sleeping pills too much pain meds - itching and red nose..hehehe I dont' know how to help him and what to do... how many year to go in pain - he is 54..go figure... hugz to all best wishes to all izabela - wife of Tom.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Izabela, I am sorry your husband is in so much pain. My lumbar acts up the most. There are days that I can barely walk. I have had to learn (and still Learning) that you should not push yourself above your limits. It is very hard to learn that. As for not being able to sleep. After talking to a counsler and getting put on meds to help my depression, anxiety, that it is our minds that keeps us up. Especially for people that as my counsler says is a burst of engery all their life and keeping very busy. Our minds tend to work accordingly. So she prescribed Elavail to help me with my sleep. It works great most of the time, once in awhile I will have a sleepless night but they are few and far between. I also learned that cymbata not only helps with depression it is also very helpful in controling the pain. Alot better than my pain meds did. I currently do not take pain meds. It is not easy, but I have managed. The pain meds did not help sure they took the edge off for a short while only for it to return with a vengance. My complaint with pain meds were the cost. I could not see paying out that much money for something that only worked sometimes. When the pain levels start going up I rest. If it gets to the point where I can't stand it and resting does not help I go to er and get a shot. This has worked great for me I become amune to the affects of drugs rather quickly so this way when my pain is in a really bad state I get the help I need.. But feel that my strongest medication is the knowledge to STOP and rest my body before I push it past its limits. Hugs, Babs Quote Link to comment Share on other sites More sharing options...
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