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I think I have found my own answer after all this time. Once I started searching the Parkinson symptoms and then the differentials, I found MSA-P. It is Multiple System Atrophy with Parkinsonism.
This describes me so well it’s scary. I am going to contact the MSA neurologist Monday.
I would rather have Parkinson’s Disease. At least it generally has a normal lifespan.
I have had headaches more this week. I woke up this morning with a bad headache and just realized why after I twisted and my whole back lined up. I had not been able to workout for a while and started working out again this week. I’m using weights and my body is adjusting. That is likely why the muscles keep pulling my back out. I twist and put them back it and they get out again sometimes within hours. I try to adjust it as little as possible but with the hypermobility they slip out easily and if I leave it out, it is very uncomfortable and I will get a headache.
I used to adjust my neck too but then found out I have CCI. Surgery is not an option though I have 2 neurosurgeons that want to do it. My whole spine is hypermobile so locking down some in the neck would just make the others worse. And really it doesn’t give me enough trouble to have surgery. I know the symptoms when it is out (all the normal ones of shooting pains in the arms and hands, headache, sensitivity near the spine) and they are completely gone when it is back in.
My main symptoms that worry me are not coming from my spine. They are definitely coming from the brain. The odd part is that this morning I woke up, stood up and my legs did not try to drop me. I am doing better today and I have the worst pressure headache from my back being out last night. So that makes me wonder now if the pressure might not help with the PD symptoms. PD is a problem with synaptic communication. Could pressure help that?
It is interesting too that yesterday I got a lot going. My mind was in high gear despite the headache and I got some work done in the yard when I have been falling down too much to do it. I blacked out a number of times and was rather POTSy but I was strong enough to get out and do some stuff.
So on my best day in a month, I had a pressure headache.
It’s a crazy illness we have.
I’m so sad that I can’t take these things. I want new liver enzymes. I hear a liver transplant will fix it. hmm lol
I’m a little different than most I’ve talked to, maybe because of my CYP liver enzymes. I recently had 4 of them checked and my CYP2C9 and 2C19 are both faulty as well as another one that is VOK gene. I wonder if that is why I am unable to process quercetin and most other antioxidants.
I am now on a low-phenol, low-histamine, low-sulfur diet that eliminates most of the foods I used to eat. If I take something like vitamin c or quercetin, there is no relief for hours of writhing pain. I went to the hospital crying in pain that lasted about 4 hours after taking quercetin last year.
I really miss the foods from the cabbage family which are high in sulphur. I didn’t know that it was also high in quercetin. I’m not sure which is more of a problem now.
Yes the SCD is wonderful for anyone with digestive issues. It’s not easy at all but was definitely worth the effort for me. I was in pain every day from 1998 to 2003. I had gone to a lot of doctors. They ran every test and was unable to do a colonoscopy because the colon was spasming when they tried to get through. I was sent over to the hospital for more tests. In the end they said it was Irritable Bowel Syndrome and that I should stop eating all fiber. I knew that was not right.
In 2003 I went to a naturopath and he suggested the SCD book “Breaking The Vicious Cycle”. I read and thought, no way! hehe. Then after an especially excruciating weekend I decided to start it cold turkey that Monday. I was still in pain right until day 30 when I was about to give up. I had a good day. So I said maybe it was a fluke. But I did not have that pain again for 6 months when I started re-introducing foods.
It turned out that, to this day, if I eat anything with corn or soy, my intestines will let me know about it by feeling like a knife is stuck in my side. Actually it got me yesterday. I’m not even sure what I ate to cause it.
That’s why I have never gone back to eating processed foods other than Ezekiel bread and the occasional granola cereal on my yogurt.
I did eat a LOT of meat on that diet and now I hardly eat any meat. But I do recommend it too. It’s not the end all of diets but it’s the best elimination diet to figure out what foods cause problems.
Oh and I have had the finger nail ridges the whole time. I still have digestive issues even if I’m not doubled over in pain like I was.
Hi Deborah — high bilirubin — did your doctor rule out hemolytic anemia (the blood cells break, and can be viewed on a slide under the microscope). I wouldn’t let them ignore that!
So is this a special test they don’t usually do? My RBC comes back normal now that I have been taking an herbal iron supplement.
I was originally tested 2 yrs ago after a car accident when my neck just would not got well. I got an MRI and the person that reads it noted soft bone marrow. So the doctor got me to get a CBC. It came back low. I tried iron and my blood pooling got really bad. My legs felt like they had real iron in them – maybe 50 lbs worth! So then I tried herbal iron and had no problem. I’ve had my blood checked a few times since then and it has been ok but my bilirubin was still just a little too high.
Hi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
Most EDS folks have vascular issues, even without having the vascular form of EDS. I know I do! But a good geneticist can rule that out for you (I <3 Dr. Clair Francomano in Baltimore).
Let us know, OK?
I am waiting for the geneticist appointment Sept 26th but I was wondering if you could say more about the vascular issues that might be found in the hypermobile type?
There are 6 of us in the family that seem to have EDS. I read that it doesn’t cross over from one type to another within a family.So we are all likely the same type even though our symptoms are different.
It looks like mastocytosis is the problem since I flush and get a fever after every meal, high histamine foods make me very sick. I also keep a mild sore throat, which I did read goes along with mastocytosis. I have to lay down multiple times every day – after showering, drying my hair, eating, using the bathroom, getting hot, etc. It’s not tired, I get very weak and usually feverish. The sudden weakness and body pain is triggered by many things and I think they are all histamine related.
I live with dysautonomia and POTS.
So there is a histamine issue going on. I had never paid any attention to mast cell disorders even after seeing different ones talk about it at the dysautonomia and EDS forums until the doctor said there was a histamine problem. I asked him if that meant I had allergies. He said “no, not at all.”
So I came home and started researching it.
Now I don’t know if he wants to test for it or anything but seeing how the tests can be inconclusive is there any sense in testing for it?
My nails look like that too. I don’t have any of the problems they listed but there is something going on with my liver since I have had repeated high bilirubin levels.
I was wondering too about something else with my nails. There are no moons on any of the nails except the thumb and there it is just a sliver. I know the thumb should be about 20% of the pink, the index finger should be about 15%, middle finger should be 10% and ring finger should be about 5%.
I am thinking that it may be my tendency toward anemia or a lack of oxygen. With my tachycardia it wouldn’t seem like oxygen would be a problem. It seems to me it is likely an EDS or mast cell problem. I have Raynaud’s but that isn’t much of a problem this time of year. Blood pooling in my extremities is more of a problem right now so that seems like it would help get oxygen to my fingers. I have considered putting a few drops of food grade peroxide in a drink each day to see if it would help but I can’t stand the taste of it even if everyone says it has no taste. 😛
As far as I know I do not have any lung problems or kidney problems. I saw them online as possibilities. I did get a bad UTI that may have damaged my kidneys about 8 yrs ago. Ever since then, if I get a fever for any reason, my kidneys ache. The only other thing related to that is that I tend toward a high morning urine pH. That is a little unusual too.
Back to the fingernail conversation… Look at this page about fingernails http://www.normanallan.com/Med/askdr/finger.html
I have ridges and have always heard it means malabsorption or could be dry nail beds lacking oil due to chemicals or hard detergents. It can also be hereditary. But this page says it could also be kidney or low iron.
“Lengthwise grooves or ridges may indicate a kidney disorder and is associated with aging. An iron deficiency may also cause ridges.”
I have hip pain too but I also have amazing flexibility. I have to keep my feet up or blood pools to my feet. So I sit at my desk either indian style or like right now with my feet sort of tucked under me but to one side slightly. I have to move very often or my hips will hurt later too.
When I’m not at my desk I prefer our love seat that is like a double lazy boy. I always pull the foot rest up when sitting there too.
I have exactly the same problem with chiropractors. They have told me I’m hypermobile and so I stretch too far when they are trying to get me lined up. But it feels like I’m back out of place within hours.
My husband got a video about home chiropractic and he learned many of the basic moves to keep me lined up. He knows how to get my hip back right and has to get my back almost every day.July 25, 2011 at 6:39 pm in reply to: Glaucoma or Dry Eye Syndrome & treatment successes? #1336
I had dry eye when I use to work at a store. I can feel my eyes get scratchy and dry many times just walking through stores. I also had dry eye when the air blew in our other house from ceiling vents. I would wake up with my eyes glued shut and bright red. Now that we have air from the floor vents it doesn’t ever happen.
I use to put a thick drop in my eyes that made it impossible to see once I put them in. So it was the last thing I did at night. They helped a lot.
It may have been seasonally worse too.
I wish there was a ‘like’ button after each comment because I can relate to all of you. I’m just learning about the mast cell activation issues and the symptoms of histaminosis. I think everything you all wrote seems to all be connected to this issue.
I can’t touch artificial sweeteners, MSGs, nitrates or nitrites and many other triggers. I sometimes have to be careful with nightshades but inconsistencies with symptoms is common for mastocytosis.
I have been trying to figure out the chicken thing for years. I know when I eat chicken I may have an unbearable itching in my hands and maybe my feet. I know now that it must have sat for a while after it was cooked (refrigerated or not) and the histamines built up in it. That can happen with any meat.
I had severe reactive hypoglycemia my entire life. I’m not sure how it connects but I suspect it does. The doctors have been trying to figure it out for decades and are still amazed. One just had me repeat my 5 hour glucose tolerance test that I had in 1990 to see if it has changed. I don’t have the results yet but I crashed 3.5 hours after drinking the glucose just like I did in 1990. I was so dizzy I could hardly walk and my hand was shaking so bad I’m not sure how she got the needle in there. They used up all my veins and I’m still very bruised from it. I suspect my sugar dropped to about 30 like before. They didn’t check my urine this time but last time I was dumping sugar in my urine when my blood sugar was already too low and my insulin numbers were still climbing. That is what amazes the doctor and I think it is a result of a dysfunctional autonomic nervous system not regulating my body correctly and over reacting to a stimulus – sugar.
I shake when my sugar is not low sometimes too from many other triggers.
It’s nice to be figuring a lot of this out after 38 years of mysterious issues.
In my studies over the last few days I have learned a lot more about histaminosis. After learning about mastocytosis at http://www.youtube.com/watch?v=zaPo0r37wEc&feature=related and from information at the forum, I am starting to understand it better. It does seem that the mast cells would be more likely to get out of control in our tissue if there is a connective tissue disorder. So that makes sense a little.
It also seems that the high histamine levels somehow trigger the tachycardia and other POTS or dysautonomia symptoms. It even seems that the histamines may be released by heat. If so, that would explain why the heat makes me so sick.
I’m trying to cut back on histamine producing foods and high histamine foods adn I’m keeping a food diary. Keeping the diary is really helping me to recognize my symptoms more. I would not have said nausea is a regular occurrence but now that I’m keeping the diary I put nausea down after almost every meal. It lasts for a short period of time after eating. Headaches come and go too – a LOT more than I thought until I had to write it down.
Here’s another very good site to learn more about it: http://www.histrelief.com/4/FAQ.html
Any further insights are very welcome.