Jaime

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

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

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

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

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

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.

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

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

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

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

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

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

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!

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

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