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Jaime

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Everything posted by Jaime

  1. I feel your pain. I am looking for similar answers. Yes, your T-spine can cause bowel and urinary problems including constipation. I am a dietitian. If you are having swallow problems, you should have a modified barium swallow. This looks at the actual swallow. They can tell you if you need modified texture foods or thickened liquids and then they work with you to help get your swallow as close to your baseline as possible. This is important because the food may actually be going into your lungs which creates problems like pneumonia. Your doc is able to order this. Some docs try and ignore swallow issues, but it's important to ask him to order that test. Your swallow problems are probably not from your T-spine issues (not a doc just speaking from experience with my patients). My pelvis has recently become very unstable and lax and I think it is causing an anatomical obstruction. I am having a lot of issues trying to get someone to do something since I am at risk of rupture. I have no bowel sounds and have not been able to have a BM in quite some time. I take miralax which is OTC or prescription and that is supposed to naturally increase the parastalsis or movement of the intestines without the cramping that a traditional laxative causes. Since you have diverticulosis/itis I realize that you can't eat most of the fiber-rich foods since they have seeds, husks, skins, etc. on them. Some of my patients mix benefiber in a drink of their choice since they cannot eat most fiber-rich foods. Probiotics(lactobacillus, bacteria in activia yogurt) are good the the GI tract as well and can be found in many new yogurts and in a pill form. Again, speak with your physician to see if these are recommended. I do know a woman who presented with GI symptoms and it was actually a problem with her spine. I don't know if that helps. Anyone who has additional comments on how to get motility started again or has an experience with physical obstruction I would really appreciate the help also because this is miserable! Jaime
  2. I am from Mt. Pleasant, currently live in Saginaw, but just got a job at a hospital in Pontiac so I will be moving to the Metro area in the next couple of months. I used to see a doc at U of M, but it is not working out. I appreciate both of you responding. I have been in the hospital with kidney stones which is why it has taken me so long to reply. I would consider going to a doc in Toledo, OH or somewhere close to the MI border. Any suggestions you could give me would be much appreciated! Jaime
  3. I was wondering if anyone knows a good POTs doc in Michigan. I had one, but I have had a lot of problems with him and need to find a new one. If anyone could recommend someone to me I would greatly appreciate it. My rheumatologist prescribed my meds to me for one month since I have had so many problems with my cardio, but she won't give me any refills. Thanks in advance for any recommendations! Jaime
  4. I have EDS and I have a lot of pooling problems. The Ehlers-Danlos National Foundation has a lot of good general info on how it is diagnosed and the different types. The website is www.ednf.org I hope that you get some answers. Dr. Grubb is the one who diagnosed me and then I also went for genetic testing. I see a rheumatologist for treatment of EDS. She has told me that she has seen an increase of EDS patients within the last year, but she wasn't sure if it's becoming more prevalent or if it is just getting diagnosed more due to increased awareness on physician's part. Good luck! Jaime
  5. The procrit should help with increasing red blood cell production. I am on florinef and procrit together and it has helped tremendously. The combo of drugs that I am on for POTS is procrit, florinef, mestinon, and zoloft and once Dr. Grubb added the procrit it helped so much it actually made my POTS a lot easier to handle. Now my biggest problem is the EDS and I only notice the POTS as bad as it used to be when the weather is hot, menstruation, migraines, or other meds that may make the POTS flare up. My doc has me getting weekly CBC to check the thickness of my blood...if you have to do the same you should ask the lab people if they will draw the blood from a finger poke because I have developed a lot of scar tissue in my veins from this weekly draw. Some labs will do it, but others won't so now my doc is letting me get the lab every other week. Good luck...the procrit has been a godsend for me...I only wish that everyone with POTS had access to it and the same amazing results as me! Jaime
  6. I plan on buying 2...probably and adult medium and an adult large. I may need a third one depending on how much they are.
  7. I have my rheumatologist write my handicap tag. It is temporary, but I only have to renew it every six months. Since I have eds and pots she understands that I need it to prevent dislocations and to keep from passing out. Your pain management may do that for you. I know how you feel because my cardio denied me to. I think since exercise is proven to improve cardiovascular health it is drilled into cardio docs head not to prescribe handicap tags. I hope you can get one! Jaime
  8. It sounds like your school won't kick you out unless your docs don't approve you doing clinical. I am going through this right now doing my dietetics internship (clinical rotation right now) and my director asked me if I wanted to wait til the next round because I was having so many dislocations due to EDS, but since Dr. Grubb and my rheumatologist okayed me doing the internship there was nothing she could do except make the offer. Dr. Grubb approved me for 20-30 hours, drinks available on the floor, compression hose, and flexibility for call-ins or doc appt. So maybe you might need to do your clinicals part-time like me or whatever your body can handle. Dr. Grubb said the most important thing to do is to listen to my body! Also, have you tried Procrit?? It has made a tremendous difference in my POTS although they took my BP up on the patient floor and it was 80/31...the nurses got a little nervous! Good luck, I don't think they can kick you out for a disability! Jaime
  9. I know it is scary to try a new med especially for POTS patients because we are so sensitive. Procrit has changed my life so much for the better. It is a pain to get my blood drawn and give myself a shot every week, but it is totally worth it. I haven't passed out since I started it and my tachy is 90% better! I am so grateful for Dr. Grubb for putting me on that. In fact my biggest problem is my EDS whereas it used to be my POTS. I don't know but maybe they are reluctant about the central line because there is a greater risk of serious infection and insurance companies may not be as eager to cover it as other things. I haven't noticed a big increase in my BP, but it just doesn't drop as much when I sit and stand, but my BP is very resistant to increasing. I am on a lot of meds to raise my BP and the highest it has ever been is 103/60. Good luck! Jaime
  10. I have had tons of experience with GI issues because my mom had a colon and bowel resection, Crohn's, gastroparesis, and bacterial overload. The blood on the diarrhea could be from the diarrhea. Sometimes I get that when I am constipated or when I have a lot of diarrhea. My doc said that that is due to the feces (sorry to get so graphic!) is causing tiny tears in your anus/rectum and that causes blood to be on the toilet paper when you wipe, but we are talking small amounts - the entire wad of toilet paper shouldn't be covered in blood. You do have very early satiety with gastroparesis and the best thing to do is go on a low fat diet. The way the diet works is you go on a clear liquid diet and then you slowly advance. It is a low fat diet though. Here is the diet I put my mom on and it helped with her gastroparesis alot, but it is hard to follow (also you should always ask your doc before changing your diet!) http://www.gicare.com/pated/edtgs08.htm Also, any pharmacy should be able to order any nutritional supplement for you...just ask the pharmacist. Also, carnation instant breakfast has a new protein supplement (like ensure) that has no milk or soy products in it and is good for GI patients because it has fiber, probiotics, and prebiotics (good bacteria) in it. You can only get it if a pharmacist orders it for you, but you don't need a prescription. Also, Boost products do not contain milk products either. I would demand a referral to a GI doc that knows what they are doing...my mom has had many more problems than she would have had if she had a better doc. Also, the blood loss is troubling because you could become anemic. Does your insurance require a referral because you may be able to just call Cleveland Clinic if they or your insurance don't require the referral. Good luck, I know how awful GI problems are, but there are answers out there! Let us know what you find out! Jaime
  11. Nina~ Do find the ribs are the most annoying? When I had my shoulder surgery they dislocated two of my ribs which hadn't been a problem in quite a while (after that I had it happen again and again, but now it is calming down) but I had to wait 2 weeks to go get osteopathic manipulation to get them back where they belong. What do you do to get them back into place? I used to be able to kind of wiggle around, but that doesn't work anymore! Jaime
  12. I apologize first for what I anticipate may be a long post...I will try to keep it short! I have not posted on the forum in months because I had urgent shoulder surgery for numerous shoulder dislocations (10 in 3 weeks..ugh!) Of course it was on my right shoulder and during my last semester of college! But I made it, graduated, have been shoulder dislocation free since the surgery, and now I am doing my dietetics internship because without completing the internship the degree is worthless. I am really proud of myself for making the top 10% of my class in a large university with all my health problems, but I am getting very frustrated and am contemplating quitting the internship and giving up my dreams of being a dietitian. I knew that I would have to do the internship part-time, Dr. Grubb and my rheumatologist okayed me for 20-30 hours (it was originally only suppossed to be 20-25 hrs) so being the driven, Type A personality that I am I did 40 hrs the first week and 36 hours the next 3 weeks. My body felt the need to give me a wake up call and my knee has dislocated 3 times in the last week and a half even though after the first dislocation I backed down to 30 hours. Now I know that this seems like an easy problem to solve by just working 20 hours per week, but my life is on hold until I complete this internship and it is unpaid (costs $15,000) which trust me, I do not have that kind of money...thank God for student loans. I have had a tremendous increase in pain, fatigue, and edema (Dr. Grubb says that that's probably due to the florinef because I have had problems with that before). I just went to see my rheumatologist and she is continuing me on Norco and started Lyrica, desyrel (I'm having problems sleeping even though I am exhausted), mucinex (a theory my doc has about if your sinuses are clear then you will have a dramatic decrease in migraines), CoQ 10, magnesium malate, and I have been in a brace and been doing physical therapy and going to get osteopathic manipulation. My question has anyone tried Lyrica, mucinex, CoQ10, or mag malate? I was on Trileptal (another anti-seizure med) and I got severely tachy. I am having such a hard time right now (I also have food poisoning since last night) that I am even starting to wonder if I can take care of myself and if I can't then I don't want to get married and force my husband to have to take care of me. Plus everyone I work with is really nice, but they don't understand how someone who just turned 26 can be so sick. But now I am just babbling. My next question is for those of you with EDS. Do you notice an increase in symptoms (i.e. pain and dislocations ) around menstration or during a specific time in your cycle (for the women) and did you notice a change in your problems around puberty? My rheumatologist is giving a lecture to the med students, PAs, and nurses about hormones and how they play into autoimmune problems...so any info/experiences you could share would be helpful also if you know of any journal articles discussing hormones and EDS I would appreciate a helping hand. I am overloaded with a presentation for the entire nutrition dept for all the campuses of the hospital system that I am at right now that's due Tuesday so I am completely overwhelmed. I have to be able to answer any questions they may ask... Final question, What is going on with Dr. Grubb? I saw that he is having surgery due to a complication of the first surgery, but I couldn't find the original post to see when or why? Thanks everyone for all your help and support...I appreciate it very much!! Jaime
  13. I don't know where you can get animals certified, but there is a place called Leader Dogs for the Blind in Rochester Hills, MI. They might be able to give you info about how to get an animal certified or what all a service animal can provide. I am not sure of the number but you can probably find it on Google or call Information for the 248 area code. Good luck! They also have miniature horses being used as service animals now. I just saw one being used not long ago and they are so cute...probably about the same size as a mastiff too!
  14. I also have a really hard time with migraines especially around my periods. I go to this really amazing headache clinic called Michigan Head pain and neurological institute (MHNI) in Ann Arbor, MI. The put me on effexor (gave me diarrhea so I had to stop it), an anti-seizure drug (I'm sorry I can't remember the name), and isometheptine (for when I am in the midst of a migraine). The isometheptine (same as midrin, but without the tylenol) is the only abortive migraine drug that I have been able to take that has helped my migraine and not given me severe POTS episode. My migraines were so bad that my original neurologist put me on barbituates and narcotics and that sent me into rebound so MHNI put me in their special head pain hospital unit for over two weeks to get me off the opiates and try and get my migraines under control. The hospital stay was a nightmare for me, but they are the only ones who have helped my migraines. If you can afford going to a place like this I would highly recommend it if you can't find help anywhere else. Also, I eat three grams of freshly ground flax seed (about three tablespoons) a day which really helps because the omega-3 fatty acids thin your blood. It is the same thing as daily aspirin, but a food instead of a drug (many cardiologists are prescribing this for heart attack patients). But because Omega-3s thin your blood it may cause you more POTS symptoms so I would ask your doc about it first. Good luck with getting this taken care of. I know how bad migraines are and that is the last thing anyone needs, but especially someone already dealing with POTS! Jaime
  15. I live in Michigan also and I see Dr. Pelosi at U of M. He is familiar with POTS and he is working with Dr. Grubb on my case. If you can go see Dr. Grubb in Toledo, OH I would highly recommend it. He helped me tremendously and the disability will take letters from him and Dr. Pelosi even though Dr. Grubb is out of state. I hope this helps and don't give up!! Jaime
  16. I get a lot of muscle spasms pretty much everywhere in my body, but especially in my shoulders, neck, and back. I am not sure if that is what you mean by muscle cramps, but I just found some amazing essential oils that are really helping. I combine lemongrass and wintergreen with a base oil (that way it will last longer because I use it a lot) and I put it in a roller ball container (think roll on deodarant container, but smaller) and just apply it to the affected area. Wintergreen helps with muscle pain and lemongrass helps with muscle pain, but also with connective tissue which is good for me because I have EDS. Then my massage therapist just introduced me to tigerbalm today and I love it. It has a combo of essential oils like cammomile, wintergreen, menthol, etc. to help with muscle and bone pain. It comes in a balm or an oil. I got the oil just because it is easier to apply. Then after I apply it if I am somewhere where I can do this I apply moist heat right on the area I just put the oil on and then I ice it. You can get essential oils at many health food stores. You may want to try something like that and then some easy stretching to see if that gives you any relief. You may want to ask your doc first to see if that's okay! Good luck! Jaime
  17. Thanks everyone for your support and advice. I had even more drama after I wrote my original entry, but things are looking better. My internship application is due on Monday so after that there will be a huge burden off my shoulders. Then I have to wait until November 14 to find out where I got accepted. My ortho doc called and she wants me to come in and talk about surgery on my subluxed shoulder which I really don't want to have surgery, but I always feel better when I know all the options and everything about a possible surgery. Well, again thanks for cheering me up and supporting me through my emotional breakdown! Also, I did go and talk with disability services and they are helping me with getting a notetaker and someone to give me my tests orally since I can't write due to my shoulder...that was a good suggestion Sunfish! Jaime
  18. Hey everyone! I have lurking around, but I haven't posted in a while. I am having a very bad day today physically and emotionally. My right shoulder dislocated about 3 weeks ago and I am still in a sling which means that I can't write (of course this would happen the first week back at school). I just had to sign a declaration of intent to graduate today with my university so if I don't graduate in December they can actually sue me. Well, my ortho doc called and told me that they want to do surgery on my shoulder...nothing reconstructive because that won't solve the eds, but to fix any tears and to get my shoulder back in place because they haven't been able to reduce it. I can't take any narcotics because I just detoxed at my migraine specialists and when I got out of the hospital I had to sign a contract that I would not take any narcotics otherwise they won't see me anymore and they are the only ones who have helped me with my migraines. Then to top it all off my mom tells me that if I have surgery then I will have to hire someone (remember I am a poor college student) to take care of me. Then one of my professor tells me that I cannot miss anymore classes even though I have only missed one class. Then all of my internship applications are due at the end of the week and that is a huge mess. I am so stressed out and I needed to vent. Also, I have been having tons of tachycardia for no reason that I can figure out. I am sorry that this is all bad news, but I needed to vent to someone who understands what I am dealing with health wise. Anyways, I hope everyone is doing better than me! Jaime
  19. I was also on Midodrine and it worked really well, but I didn't like the side effects. Dr. Grubb put me on Mestinon and that has really helped. It raises your bp when you are sitting or standing, but not when you are laying down which is good! That along with florinef, zoloft, and procrit shots have worked wonders. The procrit shots have made me be able to lead a somewhat normal life. Maybe you should ask your doc about using mestinon if you haven't already tried it! Good luck! Also, if you are having trouble eating, you may want to try boost or ensure or protein shakes. The boost and ensure take some getting used to the taste, but when I was losing weight I would make an ensure shake with vanilla ice cream and that tasted just like a milkshake. Protein powder can be used in a smoothie, yogurt, cereal, and pretty much anything but make sure that you get a kind that doesn't have a taste to it because some of the protein powders have a really bitter after taste. Jaime
  20. SSRI did help with my POTS, but I didn't take it specifically for nausea so I can't say whether it helps with that or not. But I have a miracle cure for nausea and vomiting that I have never heard anyone say did not work for them. Take 250 mg of ginger capsules four times daily along with peppermint capsules (just take as directed on label). These work wonders. If you have any problem with diarrhea get the peppermint as leaves in a capsule not as an oil because when you get the oil and have diarrhea, it burns really badly coming out...sorry to be so graphic! But taking ginger and peppermint has really helped any nausea that I have ever had. Also, I have never experienced any increased POTS symptoms from either of these as I do with anti-nausea meds! Good luck...you can buy these at any health food store or pharmacy! Jaime
  21. I just wanted to let everyone know about this amazing headache clinic I went to yesterday. It is called Michigan head pain and neurologic institute. My first visit was all day. First you get tons of lab work, but luckily I only got one pinch!! Then you go into a seminar to educate new patients about the clinic and about the different types of headaches. Then you are assigned a nurse who is with you all day and who takes a complete (and I mean complete) medical history. She spent about two hours with me. And then you see the doc who also spent about two hours with me. Then they have all new patients see a psychiatrist to make sure that you are dealing with the pain okay and to recommend any non-medicinal treatments like biofeedback or relaxation therapies. Then I had an EEG and EKG. They are putting me into the hospital for about two weeks to try new treatments and also to break my rebound cycle. But it is really neat because they have their own unit in the hospital that is only headache patients. The thing that impressed me the most is they were very familiar and educated about POTS, EDS, and fibromyalgia. It is the only clinic in the world like it and they get patients from all over the world. So I am being admitted tomorrow. I am very nervous because they are taking me off all pain meds and starting me on new preventative meds. They also are going to treat my joint pain without narcotics!! Their website if anyone is interested is: Michigan head pain and neurological institute I know that many people on this forum experience headaches so I thought that I would pass it on. I hope everyone is doing well!! I let you know about my experience when I return! Jaime
  22. I feel your pain...literally. I don't know if it is the heat or the humidity or just a bad pain week. My rheumatologist just put me on Norco. It is a narcotic similar to Lortab, but with a lot less acetominophen (spelling?). I was worried about using this because narcotics usually drop my bp very, very low, but it has helped my pain with not too much of a drop in bp. You may want to ask your doc about something like this, but I would wait until someone can be with you until you try something new...but I am sure you already knew that!! Also, the biofreeze works wonders. I get it in the roll-on that way you don't have to get your hands messy and it's really good at targeting a specific muscle group. Hope you can get the pain under control! Jaime
  23. The way I know when when my blood is pooling is my legs get red/purple with white splotches and then the veins in my feet get big (probably because they have so much blood in them) and my legs and feet get very itchy. The TTT was miserable because my legs and feet were so itchy plus everything else that goes along with that test. But varicose veins do allow more blood to pump through so I would think that that may make pooling worse. Good luck with your TTT.
  24. So I really need help...I have EDS and POTS and in February I dislocated both of my shoulders. My shoulders are back in its socket, but the muscles surrounding my shoulders and my neck are so severely tight that it is giving me bad headaches that eventually turn into migraines. I haven't slept hardly at all for the last week and a half so I am really sleep deprived which makes everything worse. I tried taking flexiril, but it makes my POTS so bad that I just faint if I am standing or sitting. I am getting pressure point massage at Physical therapy, but it is not helping. I really need some advice on what to do for this. If anyone can offer any thing I would really appreciate it. Thanks, Jaime
  25. Thanks for the help everyone! I am going to have my mom try calling the Hilton tomorrow because she is great at bargaining!
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