briarrose

Lisa It's the same frustration that we all go through and this week has been a perfect example of that. I was admitted to the hospital for 2 days this week and before I left I asked for a copy of all my tests. The doctors told me that everything was ok and that they wanted me to have some follow up but nothing to worry about and the day that they discharged me they mentioned a blood clot in my liver that they neglected to tell me about earlier. They also only gave me labs from the first day that I was there and not the second day. Well I didn't know until I was reading through the tests that there were multiple things wrong on my radiology report, my gallbladder, liver, ovary, etc. and that the radiologist recommended that I follow up with another CT or MRI with contrast which I normally can't take because of allergies. My EKG also showed mulitple new things, including a right bundle branch block that I never had before. So that's the doctor's idea of everything is fine. Also I know that I only gave you 2 examples of things that I know exacerbates ringing in the ears for me, there are actually several other things that can do that I just haven't been writing much this week. It is something you should have checked out. You don't need any fancy tests to know that you are hypovolemic, there are old fashioned symptoms of that. If I was you, I would immediately get your medial records and tests that you have already had done, just for your own piece of mind. One doctor's interpretation isn't always another ones. Steph

Personally, dehydration and a low hematocrit (blood count) usually cause those symptoms for me. You might want to check those things out.

Sorry I haven't replied to all of you guys lately. I spent a couple of days in the hospital, got out yesterday and still not up to snuff. I will have to look into the TENS unit but I didn't realize that you could just purchase them. I'm glad to hear that. Thx everyone for your input and experiences. steph

Possible cause? There saying that Dysautonomia is a probable cause of IBS. I will see if I can find you any of the literature but I just got out of the hospital so I'm not real reliable right now, sorry

What a wonderfully fantastic story, it felt like I was there sharing it with you and I had a huge smile while I was reading this fantastic evening. Congratulations and well done! Thank you for sharing such a delightful part of your life.

Yes, nausea is a pretty common problem for most of us. There have been several discussions on this so you might also do a search. I use Zofran for an anti-nausea medication and it has been extremely beneficial too me. Phenergan doesn't do a thing for me and I have a very strange reaction to one of the other meds. It will probably be something that you'll have to try on your own to see what your body tolerates. Good luck

You peeked my interest in the teeth too because I thought it was more the Dysautonomia then EDS but there are times that either all my uppers or all my lowers just ache. Its the weirdest thing and extremely painful. As far as the joints. I've been dealing with joint pain for a very long time and my ankles aren't too bad but my knees are horrible. I have more problems with my fingers than my wrists, although my doctor out here had me wearing a wrist brace for awhile for the pain when it was at it's worst. I can rarely peel potatoes or apples for pie anymore because it's too painful. Julia I've had severe hip pain in the past that was bursitis and they treated me with ultrasound, warm heat to the deep tissue. I have certain extremities that get very cold and that is sometimes when they hurt the worst. I haven't seen an orthopedist so I'm sorry no real good advice here just sympathizing with you, sorry. I've found Neurontin to help with the joints the best. I wouldn't be able to function without it.

Your story was well written and very helpful to many I'm sure. It took me a bit to read it all but was well worth it. It's funny what we endure when forced to. It's horrible that it takes so long to get help from the medical community. thx for taking the time to write your experience out. steph

Welcome Have you picked up a copy of your medical records. I found that even when they told me everything was fine, some of my values would be off and when I asked about it they usually didn't know what it indicated. I'm mentioning this because I'm wondering about your tilt table and how it was done. What was your heart rate during the tilt? And did they give you any medication while you were on the tilt table? Were you on any medication prior to the tilt? Second, I was having extreme difficulty with my eyes. My MRI showed a small spot in my brain but nothing that concerned the neurologist. My ophtamologist suggested that I get my Vitamin K level tested as this sometimes causes difficulties with the eyes.

As for getting your medical record changed, it will have to be the doctor that made the mistake or was doing the dictating. A transcriptionist can't change what a doctor said based on what a patient requests. And I've learned to be careful what I say to doctors as their own warped views and bias can make your life a worse living **** then it already is. Talk to the ones that you trust and feel the new ones out. good luck

I've had horrible problems in the past with shortness of breath. Sometimes it was side effects from my beta blocker. I switched medications and the problem grately improved.

Congratulation Jessica Great pictures, what a beautiful family. I hope your feeling alright and getting some rest. Take care and send more pictures when you can steph

I can't tell everyone how much I appreciate their suggestions, thank you. I had another PT appt yesterday and she used a TENS unit on me. Thank god, this finally helped. I'm going to do research on this "TENS Unit" later today to see what it is and why it helped. I don't quite understand the whole concept of electro-therapy yet. Anyway I can finally turn my neck comfortably for the first time in over 3 weeks, yeah I have another appt today and am looking forward to it.

Thx Tearose I know better but I wish just once in awhile there was a straight forward answer to our problems. But hey, it's life and us POTS patients have mastered dealing the blows that are thrown at us. I will definitely try some of the things mentioned here. Protein? What foods did you add if you don't mind me asking? I can tell you that this morning my spine feels like it's inflammed down to the bone. I don't know if it's the muscle spasms pushing on the bone or if it's truly inflammation but I can't take much more of this intense pain. Laying down to sleep is absolutely the worst. I slept with 4 pillows supporting my back and neck yesterday. I haven't tried to sleep yet today but heading there now after a pain pill What tests did they do on you for neuromuscular? I've dealt with muscle spasms for quite a few years now but it's rapidly getting worse. They last for weeks now and effect several different muscle groups at a time. Oh well, can't think anymore this morning, too tired and in too much pain. thx guys talk to you soon steph

Blackwolf Funny you should ask because yesterday I finally broke down and went for a massage as I knew I wouldn't make it waiting for PT next week. I was so stiff in my lower back that I could barely roll over on the table. When I sit for too long I get stiff in my knees but I don't think that has much to do with what I'm experiencing with the spasms all though I might be wrong. Anyway, it seems like this has been going on for ever and I'm tired of this pain

Kite7 thx for all of your helpful information. I was already doing the vitamins and I know that potassium and magnesium are very important. I'm just realizing the importance of calcium and creatine. Do your muscles ever start burning from being in spasm for so long? That is the worst. AND once I go into spasm it doesn't let up for days, It's not intermittent. I'm not at all familiar with med balls , swiss balls and stability boards but I will look them up. Thx steph

So for several years I've been dealing with muscle spasms in nearly my entire body at one time or another. The last 3 weeks it's been the left side of my neck, upper back and most recently the front of my neck into my collar bone. Sometimes when I stretch my arms or legs, they immediately knot up. My feet cramp when I walk. Yesterday I was carrying my boots by the shoe strings and that made my hands cramp up. I consulted with my endocrinologist, primary care doc and my cardiologists office. 2 of them think that I need to have a repeat MRI of my brain and have hinted at it being a neuromuscular disease. They've suggested that I head back to my neurologist to be worked up. I'm a bit nervous at this suggestion because my neurologist didn't really understand dysautonomia when I went to him last year with visual difficulties, headaches & cognative problems; and this particular neurologist is HIGHLY regarded as being one of the best here where I live. Trust is the issue I guess. I almost feel like I would get better care on the East coast where they have neurologists that have heard of dysautonomia and POTS. I'm a bit nervous as I would prefer not to have anymore diagnosis added to the already long list, thank you very much Not completely sure what to do or what to think I'm just tired of being in such severe spasms that I can't turn my neck. Sometimes I'm not sure if I should scream or cry the pain is so bad.

Mighty Mouse you're so funny and Ernie I was thinking the same thing. Animals probably get better treatment at times then we do. Thx all for your responses and the reason I brought it up was because I was talking to a doctor friend at work last night. I was telling him about some new difficulties that I'm having and I stated that if I really have a neuro-muscular disease then I want to travel to the East Coast to be treated. He didn't understand this and made a comment about having 1 doctor to manage everything. I tried to explain to him that this is a nice concept but really nearly impossible considering all the different issues of Dysautonomia and the lack of knowledge to manage it all as a primary care doc. This got me to thinking and almost feeling guilty about how many doctors I do have. Personally I have a Primary care 2 cardiologists (one in my home state and one in the midwest) Rheumotologist neurologist ENT ENT surgeon Endocrinologist GYN doc GI Allergist Hematologist Ophtamologist (sp) OK, I had to cheat and look at Nina's list because it was very complete and helped me to remember who I see. Thx guys for responding to this. I feel a WHOLE lot better knowing that I'm not doctor seeking I hope everyone else feels the necessity that I do in trying to find help where you can get it by the specialists that know best.

I made a post recently volunteering all my meds just for this reason, here it is. http://dinet.ipbhost.com/index.php?showtop...6&hl=medication

Emily Thank you for having the courage to say what you did. I couldn't have said it better, well we all know that because I usually let attitude interfere so I've completely steered clear of the subject all together. Ernie, Morgan, Gena nicely said guys. Melanie, Tearose, Corina and everyone else, it was great that you all chimmed in too. Let me reiterate that I agree with everything Emily said, thank you Em! Steph

I'm wondering how many different doctor's everyone else sees to manage there various problems? Cardiology Neurology Primary care doc Endocrinology Infectious disease Pulmonalogy ENT G.I. Urology Other?

Shelby Is there a certain time of the month that you're noticing your migraines?

Welcome to the board. I prefer EPS treating my symtoms rather than any other speciality of medication. It also depends on what part of the country you live in. It's nearly impossible to get help on the West coast.

I don't know about the other medications but I prefer Imitrex. I have migraines so bad that I start vomiting. I agree with the others, when you feel your migraine coming on take your medication. About the side effects, you can call any 24 hour pharmacy and ask a pharmacist what to expect from the medication. Or wait until tomorrow to speak with your doc. I'm very medication sensitive but I've never had any problems with Imitrex. Steph

Are you sure of your diagnosis. Shy Drager is extremely hard to diagnose and we all fear it. Johnny Cash was misdiagnosed with it at one time even. I'm wondering how they came to the diagnosis of shy-drager and what they told you your prognosis was. Beta blocker is good for the tachycardia and florinef is good for hypotension.