August 16, 2013 at 3:41 pm #541Paul BackhouseParticipant
Hi Dr Diana,
Just wanted to drop you a line about another weird occurrence or two– for your thoughts.
The last 2 weeks ive had a UTI or Kidney infection,i took a weeks worth of Anti-biotics called Nitrofurantoin 50mg (probably a different name in the US ?) -i continued to have problems so was given another anti-biotic called Ciprofloxacin 500mg,i only have 3 more to take (2 a day)-yet still think ive got an infection.Interestingly my urine dip test was negative !
Alongside the horrible effects i was having this horrible internal burning and metallic taste in my mouth.
Last night in desperation i was surfing on the web and came across medical usage of Sodium Bicarbonate -anyway i took some and immediately got relief from the acidity in the stomach(i know this is a common treatment for heartburn etc) and it also calmed down the burning when i had a pee !-i didnt know it would also calm down the urinary system too ? I guess you know there are some very big claims for sodium bicarb on the internet ? —cancer cure etc
Im beginning to think from this that us EDS people have a severe body acidity problem -thats not detected in blood tests ? -as the sodium bicarb is very alkaline and seemed to calm things down.Im now looking into the possibility of drinking ionised (alkaline) water and upping all the alkaline foods big time -ive already gone gluten free since the amazing Greenmed info video attached.
I found out from a very good friend locally with quite severe eds problems that she was treated as a crank for years because she kept presenting with urinary tract infection symptoms at her doctors.They did a dip test of her urine and said nothing was wrong.Eventually she did get listened to by a urologist and when he took a biopsy of her bladder he found 3 infections that he reckoned had been there for 10 years or more ! -not sure how he knew that though.So my friend has to have very intensive UTI treatment whenever she gets signs of another infection ie Cefalexin,Doxcycline,amoxycillin taken for 2 weeks then a high dose of Augmentin for a further 2 weeks followed by 6 weeks of Probiotics !
Not sure if you knew this information or not ? I guess you may know others with similar stories or symptoms who are misbelieved about this kind of thing ? Im not sure if taking daily sodium bicarbonate with water will continue to help my symptoms,but i presume it cant be that dangerous compared to a lot of the side effects of other meds that us EDS people take.I will attempt to post this on your forum too to see what others think about my theory and experiences.The story about the nun and the guy who recovered from ALS are quite shocking on this video,more food for thought here ? http://tv.greenmedinfo.com/celiac-disease-gluten-sensitivity-with-dr-tom-obryan/
Best wishes….August 17, 2013 at 7:33 pm #4123
It sounds like Interstitial Cystitis. Very common for EDSers.
ShondaAugust 17, 2013 at 9:30 pm #4125Dr. DianaKeymaster
Lots of interesting stuff here. I DO think we tend to be acidic (is it due to chronic inflammation? I don’t know). Many of us on Diamox have to avoid acidity and it can be a beast to get on top of for many of us! I agree with Lab-Scientist-Lady that your symptoms do sound a lot like the beginnings of interstitial cystitis, and acidity HURTS when your bladder is damaged. Alkaline drops are GREAT! Sodium bicarb is often necessary, but you may want to have a urologist or nephrologist monitor you because it can increase your risk of kidney stones. Gluten sensitivity can mimic ALS, MS, etc. Many of us try to avoid inflammation, and gluten is one of the first things to go. I say this as I’m staring at a delicious homemade, warm, cream-cheese danish that my mother-in-law just brought over! Agh!August 18, 2013 at 12:22 pm #4126
Hi, I’m brand new here, and very frustrated. I have read some of the information on PrettyIll.com when I am able, and it makes so much sense. I am hoping for some guidance. I am a 57 year old female. I have had interstitial cystitis since 2002, I take Elmiron for it. I have had issues my whole life and I suspect I have Ehler-Danlos hypermobility type. So far I have been diagnosed with: (interstitial cystitis), T.I.A. 1/24/13, essential tremor 4/29/13, hypothyroid 5/14/13, neurogenic bladder 7/16/13, mitral valve prolapse 11/22/11 (I also take Ranexa for angina because I have “small arteries”), fibromyalgia 1/21/12, degenerative joints in hips 7/12/13, tipped uterus 7/11/13, 5 mm kidney cyst 6/10/13, urethral polyps 7/16/13, endometriosis (diagnosed in 2004, but I have gone through menopause), scoliosis since age 10, diagnosed by school nurse-45 degree curve in thorcic spine, osteoarthristis, degenerative discs and joints in cervical, thoracic and lumbar spine, bulging disc in lumbar, anterolisthesis, spondyliosthesis, spondylosis, sciatica, radiculitis, foraminal stenosis, subcortical cyst, chronic pars defects (lumbar), reversal of lordotic curve, chronic wedging C5, end plate irregularity, reactive marrow change. I was in the hospital last weekend after my current dr. increased the levothyroxin I have been taking since May from 25 mcg to 50 mcg-I took the first 50 mcg dose at 4 am, and when I got up at about 9:20 am, I was having extreme jerking and tremoring all over, I went to hospital emergency, they admitted me and kept me overnight. I couldn’t sleep much because of the movements but they stopped next morning. They diagnosed me with tonic-clonic activity, gerd and atypical chest pain. They released me since I told them I will follow up with my doctor. I don’t look sick and doctors usually tell me I’m “anxious.” The nurse’s aid did a blood pressure test where she had me lay down, sit then stand, but she said my blood pressure was about the same each time. Since Jan. 2013, I have been to a urologist, cardiologist, rheumatologist, neuropsychologist, endocrinologist, several neurologists, gynocologist, psychologist, physical therapist, physiatrist, and have just changed to a new primary care doctor at the Mayo Clinic. When I had my first appointment, she was a little overwhelmed with all the information I provided, and had me go for the test where they connect electrodes and put tiny needles in the muscles. The follow up neurologist at Mayo Clinic said it just shows I have sciatica. They did mri with and without contrast of my brain, cervical spine and thoracic, and he said it all looks okay, but he will look at it more later “when he has time.” He said he is a Parkinson’s specialist and I don’t have Parkinson’s Disease. Which is a relief, but I still don’t know what is going on. I have an appointment with the new primary care doctor (D.O.) at Mayo Clinic tomorrow to follow up because of the hospital stay. My sister has Mast cell disease and my mom and sister and I are all “double jointed.” My brother is hypothyroid with diabetes type2 and heart problems. I am the only blonde haired blue eyed female in the family. I can do at least 5 out of 9 on the Beighton scale. When I was a child, the other kids called me “camel” because I would hyperextend my knees and my hips were “loose” when I walked. My uncle took a super 8 movie of me walking and showed it on “family night” to “shame” me into changing the way I walk, because my family thought I was doing it on purpose. I taught myself to walk with my knees slightly bent and hips still by using a mirror. I have big lumps on my forearms and smaller ones elsewhere, had a big one (golf ball size) removed from my upper thigh when I was in my 30’s. When it was removed, the dr. couldn’t understand why the local pain killer didn’t seem to work and I could feel him cutting ( I also seem to feel everything at the dentist). I get terrible back of the head headaches, and have these “spells” where I get really HOT, break out in a cold sweat, dizzy, back and chest pain, trouble breathing, start passing out. I get pain in my knees, then they go weak causing me to fall ( I walk with a cane since March). I have so many symptoms I can’t list them all. My urologist thinks I have MS. I am scheduled for a “movement study” at Mayo in Sept. with a follow up with an MS specialist neurologist, then another appt. with a rheumatologist who supposedly knows about EDS, but that appt. isn’t until the end of next month. Am I on the right track? What can I say to the doctor at Mayo Clinic tomorrow to get tested for the right things?
The headaches and eye pain alone are kind of scary.August 18, 2013 at 12:41 pm #4127Dr. DianaKeymaster
Hi, I’m brand new here, and very frustrated. I have read some of the information on PrettyIll.com when I am able, and it makes so much sense. I am hoping for some guidance.
HI Elaine, Welcome! I’m so glad you found us! Because we tend to have about 200 symptoms (no exaggeration), I use a Symptoms Checklist to guide me. Can you fill this out and send it to me? You can find it here (with instructions about how to get it to me). http://prettyill.com/resources/view/symptoms_checklist_for_chronic_fatigue_syndrome_m.e
Believe it or not, I’ve had EVERY SINGLE SYMPTOM you have described! My kids were headed down the same path. When I became sick (and participated in numerous clinical trials at Mayo), they were unable to help me. Rather than try to “teach them”, I’ve taken things into my own hands! I have a treatment trial for one of our main problems going right now. I am in Texas, if you can make it. I’m gathering names for the NEXT step, which will take care of many of our dysautonomia symptoms — the gastroparesis/chronic constipation/delayed gastric emptying will be the first symptom that you’ll see disappear. Yeah! If you can participate, that would be awesome.
Alternatives are participating in this forum, which can be some (free) help, getting a one-on-one consult (just click on “I want a consult” on the home page — scroll down and you’ll see it on the right), or waiting for publication of the results of the trials, and manufacturing of the medication.
Next, I’m going to hit our interstitial cystitis and I’d like to take care of that horrible insomnia we get. I’m not sure which one to go for first!
I think getting the symptoms checklist back to me (just follow the instructions) will be a great first step. When you return it to me, can you remind me that you may (or may not!) be interested in either of the treatment trials? I’ll get you that info then. OK? Thanks, my friend, and hang in, OK?August 18, 2013 at 6:17 pm #4131
Hi, I’m brand new here, and very frustrated. I have read some of the information on PrettyIll.com when I am able, and it makes so much sense. I am hoping for some guidance. I am a 57 year old female. I have had interstitial cystitis since 2002, I take Elmiron for it. I have had issues my whole life and I suspect I have Ehler-Danlos hypermobility type………………). I have so many symptoms I can’t list them all. My urologist thinks I have MS. I am scheduled for a “movement study” at Mayo in Sept. with a follow up with an MS specialist neurologist, then another appt. with a rheumatologist who supposedly knows about EDS, but that appt. isn’t until the end of next month. Am I on the right track? What can I say to the doctor at Mayo Clinic tomorrow to get tested for the right things?
The headaches and eye pain alone are kind of scary.
It sounds like you are on the right track. Although you may really have the classical form of EDS. It is also, possible to have MS plus EDS they can run together. Have you seen a Geneticist yet? You should make an appointment with one too. It will take a while to get in. All the symptoms you describe are ones I have too. So I would tell the doctor tomorrow that you suspect that you have EDS, and the way you describe it so do your family members. Good luck tomorrow. I also, had luck with finding a dermatologist to do a skin Bx that showed I have a connective tissue disease. It maybe hard to find a good dermatologist. I lucked out with that because she knew the right pathologist to send my biopsy to. Keep us posted.
ShondaAugust 23, 2013 at 11:07 pm #4190
How did your Mayo appointment go?August 24, 2013 at 10:26 pm #4198
Dr. at Mayo didn’t say much, just that we can follow up with the movement study, then the rheumatologist and then she wants me to see a different neurologist, one who apparently knows about EDS. But I couldn’t get an appointment with him until Nov.August 25, 2013 at 5:10 pm #4205
I know this is said to say, but being able to get into a neurologist by November is pretty good. It took me more than six moths after I had a brain bleed. I hope the new Mayo PCP works out for you. Maybe she will do a good job managing everything once all the tests and results are back. I need to find a good doctor to help me manage everything. I love my PCP but she is overwhelmed. I have an appointment with a endocrinologist in a month, because the rheumatologist I was seeing said she does not do EDS. I hope all goes well with the rheumatologist next month and you are on the road toward getting answers.
ShondaAugust 25, 2013 at 6:36 pm #4212
Thank-you!October 2, 2013 at 7:45 am #4477BarbaraParticipant
I just wondered Lab-Scientist-Lady, do you know anyone who studies urine under the microscope?
I bought a microscope (albeit only a basic one, not a professional one) from a charity shop, as I was curious what I would see. I allowed some urine to evaporate (so yes there could be some contaminants, e.g. yeast) I took some weird and wonderful pictures with my ipad.
This may have been just a waste of time – but you never know, something might hold a secret to the condition. So just in case you can throw more light on the subject, or know of someone else who can, or if anyone with that skill stumbles on the website, I would appreciate any comments:-
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