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August 22, 2013 at 3:37 pm in reply to: Newbie looking for advice about symptoms and appointments #4176JenBParticipant
Haha, oh yes, fun times indeed. ๐ The more I learn about MS symptoms, the more I see that I definitely have some overlap there. Ulnar neuropathy, the MS hug, spasticity, tremors, vision changes, occasional difficulty swallowing, weakness, etc. I am still learning. I don’t know yet if MS-like symptoms can be triggered or if they only progress on their own but I have definitely had worsening symptoms ever since I had a cold last fall. Along with progressive clonus and other myoclonic-like tics and spasms, a 40 pound weight gain in less than a year, worsening sleep which was already bad to start with, dyshidrotic eczema decided to show up, head/neck pain that continues to get worse, racing heart rate, and all kinds of fun things like that. I just ordered a 23andMe test so I hope to learn something useful from that. Fingers crossed I get my results without too much trouble because it seems there have been some issues there according to the 23andMe Facebook page.
I have always had symptoms my entire life but I seem to have had two trigger points within the past few years. Last fall was a cold that triggered and/or worsened many of the aforementioned symptoms and I think I may have had a prior trigger a little under 3 years ago. I have no idea if I had a cold around that time or not. I can’t remember anything other than I know exactly when things seemed to change. My husband’s grandfather passed away and we had to drive halfway across the country to attend the funeral. I had had bouts of motion sickness in the past but nothing too strong and very infrequent. Well, that trip was absolute torture. I thought I had gotten food poisoning. We had to stop a few times so that I could vomit on the road. I have had horrible anxiety attacks in the past so I am practiced in trying to control nausea but this was horrific. And I have had terrible motion sickness ever since. I have to take dramamine every single time I get in a vehicle now. Some days I might forget and it seems to be a luck of the draw what the effect will be. Occasionally I might only feel a bit off and unwell and not hit quite so hard. And roughly around the same time that the motion sickness started, my menstrual cycle changed. It had remained constant and unchanged for the prior 14 years or so and yet suddenly the length/intensity cut in half. It still followed my typical 28-30 day cycle but it lasted for half the time and was much lighter. It has remained that way ever since. I mentioned it to a doctor who said “Meh, that just happens sometimes.” Which is certainly true but seems more suspect when it also matches other noticeable body changes that are occurring at the same time. Has anyone else experienced sudden changes like that?
I have my first ever gastro appointment in 4 days. I’m nervous and, even with a list, I’m afraid I will miss something. I have soooo many gastrointestinal issues it is hard to know where to start. My main concern is what condition my esophagus is in after nearly two decades of intense and constant acid exposure. Other concerns are possible inflammation, hernias, a weak or misaligned esophageal sphincter, delayed emptying, gastroparesis, IBS, Celiac-like response (previous bloodwork claimed I did not have Celiac but I don’t know about a sensitivity), bloating (I pretty much look a couple months pregnant 100% of the time and sometimes my stomach expands as if I am several months pregnant), etc. I am so desperate to know exactly what is going on and why. I want information so I can fight back. I am so grateful to have found PrettyIll!
August 18, 2013 at 8:31 pm in reply to: Newbie looking for advice about symptoms and appointments #4132JenBParticipantBarbara, thank you SO MUCH for your help with my MRIs. *sends you tons of good energy*
August 13, 2013 at 1:00 am in reply to: Newbie looking for advice about symptoms and appointments #4106JenBParticipantAw thank you so much! I’ll get back to you within the next couple of days. I will be out of the house tomorrow.
August 11, 2013 at 10:32 pm in reply to: Newbie looking for advice about symptoms and appointments #4100JenBParticipantBarbara, I’m not entirely sure exactly what my blood has been tested for. I’ve asked but haven’t been able to get detailed answers and so now I am trying to get copies of the results so I can have a checklist of everything that has been tested for and what the exact results were. I do know that my blood was sent to have specific testing for mitochondrial issues that I believe only a few locations in the US actually perform. I was given the vague answer that my results did not show a sign of mitochondrial dysfunction but “that doesn’t mean it isn’t there.” Nothing has been officially ruled out so MD is still included in the long list of things that are possibly going on. After I mentioned EDS and Dysautonomia to my doctor, she seemed to think that a connective tissue disorder was perhaps the cause of my problems and that it could replace the Mito/MD theory. I haven’t abandoned it myself because I am simply remaining open to where the evidence takes me. I assume nothing. Within the first half hour of my very first appointment with my doctor (last December), she seemed concerned and I could tell that she thought something was wrong. In my second appointment, she mentioned that I have muscle wasting in my right hand (dominant hand)and that in combination with muscle weakness and weird muscle tics led her to suspect Muscular Dystrophy. I had some nasty hits to the head as a kid so I was sent for a brain MRI and my doctor also set me up to meet with a neurologist. Since the neuro appointment went terribly, it seemed like everything just kind of got stuck and months have been spent simply trying to find anyone who would be willing to meet with me. I recently had a tilt table test and my heart rate and BP were weirdly stable the whole time but I almost fell on my face as I was getting off of the table. The nurse immediately asked if I have MS. I do seem to have symptoms similar to MS and MD but there is so much overlap with so many things that it is hard to figure out what is a good lead and what is not. A neurologist that I am seeing in September supposedly has good experience with autonomic dysfunction as well as neuromuscular issues and movement disorders. I was being sent to him for Dysautonomia but I’m going to throw in my tremor and MS/MD issues as well. Squeeze as much info out of him as I can get. It was just by chance that I came across info on EDS and later Dr. Driscoll and it all makes so much sense. Mito/MD/MS potentially might fill in the blanks for the weird things left over that EDS does not explain.
August 11, 2013 at 12:19 am in reply to: Newbie looking for advice about symptoms and appointments #4092JenBParticipantHi Lab-Scientist-Lady! I love your name by the way. ๐
Thank you so much for your response. I have an appointment with a geneticist in November. I am really hoping I can get some answers or at least some good info to work with. I’ve always had to handle things on my own and had a terrible appointment with a neurologist back in January so I am rather nervous about my upcoming appointments. I am dreading the possibility of more doctor unpleasantness but I know very well that doctor unpleasantness is a common occurrence for EDSers. Fingers crossed these appointments of mine won’t be too bad. The first doctor I am seeing is a gastroenterologist in about two weeks and then a neurologist a couple weeks after that and the geneticist in November. I’ve never been to a gastro or geneticist before (and my only experience with a neuro was a nightmare followed by 3 others who refused to even meet with me), all of this EDS stuff is new to me, and I have pages and pages of symptoms (not to mention all of the new stuff that pops up as well as all of the things that I am still learning are actually symptoms) so it’s a bit overwhelming to figure it all out. What’s worse is that my brain has apparently decided to take a leave of absence and has been waaaaay more foggy than it ever has been before. I feel like I’m losing my mind and can’t function at even half the level I did just a few months ago. It’s amazing to find all of you lovely folks. I have never known or heard of anyone else who experienced the same things as me so it is still strange to not only find out that there are others out there who are like me but that there is also actual conditions and names for all of these experiences. Suck it, everyone who called me a hypochondriac and treated me like an idiot! Booyah!
August 2, 2013 at 7:29 pm in reply to: Newbie looking for advice about symptoms and appointments #4037JenBParticipantThank you, Dab and Barbara! I don’t get emotional but you guys make me want to tear up because I am so used to being dismissed and never receiving support from people. *Internet hugs!*
I’m trying to learn what I can and Dr. Driscoll as well as all of you lovely folks are such a huge help.
I’m on my second day of Zantac 150mg and it is going well. I have been able to actually lie down and attempt to sleep at night when I typically was kept awake all night with horrible burning and being stuck in an upright seated position. Fingers crossed it continues to go well. Nexium started out okay but definitely was not the right medicine for me so I hope that, since Zantac approaches stomach acid in a different way, I will have more success with Zantac.
I also got one of those travel pillows that wrap around the back of the neck and oh my goodness that has had a bigger impact than I thought it would. The back of my head and neck having support has seemed to (at least slightly) ease the constant headache I have back there. It reminded me of when I was younger and I would sit on a bean-bag chair. I would settle into this super comfortable position that would support my neck and it would cause me to pass out for a good hour and a half. I never could take naps and yet that bean-bag chair would cause me to knock out for a full REM cycle no matter what. It was the best rest I had. I keep trying to find a way to recreate that. If I sat in a bean-bag chair now I would probably not be able to get back up.
I came across all of this EDS stuff by chance just a couple months ago when I was looking online for finger splints. I can have absolutely excruciating pain in my finger joints that require them to be completely immobilized. All of my fingers bend farther back than they are supposed to and without any effort at all. I didn’t realize that I have always held my pens and pencils more tightly than “normal” folks. The tip of my fingers can bend back over 60 degrees so, in order for me to hold on to anything, I have to have a very tight grip on it. It even resulted in a big corn or callous type thing on my middle finger from the constant pressure and rubbing. I recently started wearing Oval 8 plastic finger splints made by 3PP. What a difference! My joints are actually held in place! I put one on the end of my index finger and it completely alters how I hold a pencil. It’s like I have to learn how to write all over again.
In my newbie research, I see over and over and over again how many people suffer from the same issues. I know I am preaching to the choir when I say I just don’t understand how doctors don’t see it or are not willing to look deeper. That first neurologist I saw screwed me over too because 3 other neurologists refused to even meet with me after that. I tried to go with what I thought was an easier path since I so obviously have Essential Tremor and tried to meet with a neurologist who specializes in movement disorders and Parkinson’s and ET specifically. His office didn’t even bother to call my doctor back and an entire month went by before my husband and I were able to get a hold of them on the phone directly. The receptionist said that doctor refused to see me because he “really only works with Parkinson’s.” And yet what do I find on Youtube? A video posted only 4 months prior of that doctor discussing Essential Tremor. They lied to me. And if he didn’t want to treat me then okay that’s fine but they could have given me the courtesy of saying so from the beginning. I spent a month researching doctors and picked him and then another waiting. Two months spent on that man when I could have been trying to find another doctor who isn’t a butthead. ๐ Fortunately my PCP is pretty decent and seems somewhat familiar with odd conditions. That first neurologist definitely did not help my concerns about being dismissed. It took a lot for me to ask for help. But I shall not be broken! I haven’t broken yet and I am not going to start now. I know I deserve to be treated better even if other people don’t seem to agree. And all of you lovely folks in this community contribute to making the world a better place every single day. Giant internet hugs for everyone!
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August 1, 2013 at 10:02 pm in reply to: My Spoonie Art Contest entries comes from my love of writing, photography, and oh singing also. #4024JenBParticipantBeautifully done, Amy!
August 1, 2013 at 2:21 pm in reply to: Newbie looking for advice about symptoms and appointments #4023JenBParticipantContinuing the insanely long post:
My knees have been a huge problem for me especially starting in my teens. I used to work at a Target store and my coworkers constantly pointed out how my knees were always popping, cracking, and grinding. One coworker said that it sounded exactly like her knees and those of her family and they all have arthritis. I started poking around looking for info about that and I fit the descriptions for arthritis quite well. It has continued to progress to the point that I can’t do many things. There can be an almost constant joint pain with random flare ups with various symptoms. Sometimes excruciating pain, sometimes a warm, burning sensation, etc.
I have had sleep issues either for years. I don’t even know when it started. I can say that for the past several years, I never feel rested even if I was unconscious for several hours. I have terrible insomnia where the idea of being unconscious for several hours is laughable now. I’m a very light sleeper. I can feel completely wiped out and my mind will not be racing or anything like that and my body will just not go to sleep.
I have had horrific stomach issues. Every single day I have had horrible acid issues. And with a past with anxiety and nausea/vomiting, there is a scary amount of acid that has come up my esophagus. It has even gone up into my sinuses and, if anyone else has had that, you know it is awful. You feel the acid burning your tissue and you can’t do anything to stop it. I did a 4 month stint on Nexium that ended a couple months ago and it was great at first. But instead of the burning throughout the day and night, I ended up having what I describe as acid coughing. I would snap up at night with a sudden horrific cough and it felt like acid was spraying my throat. It ended up happening every single night so I stopped Nexium. Turns out I made the mistake of not weaning off of it so I had unbelievably bad rebound acid. Side note: I tried the combination of Zantac and Zyrtec for the first time last night and I had the best night sleep I’ve had in several months if not longer.
I have an appointment at the end of the month to see a Gastroenterologist to check what condition my esophagus is in after all of these years of acid.
The Driscoll Theory (thank you Dr. Driscoll!!) has been an amazing find that I have only just started learning about. Because in addition to a loooong list of other issues, I have what I believe is pressure on my brain. It’s exactly what it feels like. I have the constant pain and pressure in the back of my head. If I lean my head on something or at a bad angle the pain and pressure shoot up. If I lay down flat, sometimes I am immediately overcome with excruciating pain in my head that becomes a migraine and does not go away as soon as I get back up. It takes awhile to fade. I have had a few instances of clear fluid coming out of my nose that didn’t seem to be nasal drainage but I dismissed it as such anyway. That might still be the case but I am curious about spinal fluid now.
Uh let’s see. My brain is getting foggy and I don’t want to forget anything. Um, lifelong random heart palpitations. Chemical sensitivity that causes horrible coughing and nausea. light and noise sensitivity that has gotten worse within the past two years as well as sudden intense motion sickness. Migraines, ice pick headaches, pins and needles feeling in my extremities. My legs and arms can very easily go numb now. My feet can turn red and purple and I also get livedo reticularis. I never really get sick but I had a cold for an entire month last fall and that seemed to trigger another decline. I have to use a cane for balance now and I am extremely weak and fatigued all the time.
I have Essential Tremor that mainly affects my right hand but now also affects my head and other random things. There was a shaking in my legs that I thought was possibly connected to ET but I learned just yesterday that it fits clonus. I had a Tilt Table Test that was completely normal but when I got up off of the table, my body was shaking and the nurse grabbed me to make sure I didn’t fall to the floor. The first thing out of her mouth was to ask if I have MS. Unfortunately MS seems to be more and likely now as well.
Before I forget, I have had tons of bloodwork which all came back supposedly “normal.” I had a brain MRI which I was told was normal and I got copies of it but don’t know what I am looking at. My doctor originally suspected Mitochondrial Myopathy and Muscular Dystrophy. The bloodwork for that was also uneventful. At my last appointment, I brought up EDS and POTS so I had the Tilt Table and now I am in line to see a neurologist familiar with autonomic dysfunction as well as a geneticist who has experience with EDS. I saw a neurologist in January who completely dismissed me saying it was all Anxiety and then basically accused me that if I tried to get a second opinion then I would be one of those patients who hops from doctor to doctor until I “hear what I want to hear.” And I knew way more about Essential Tremor than him which doesn’t help my confidence in him and I was having difficulty walking right in front of his face and he didn’t care.
So I am doing the best I can to gather info but I feel a bit overwhelmed with not knowing exactly what to ask and what to look for. Especially since a lot of doctors might not be well-verse in these things. I know there are so many more symptoms that I am not listing right now and I thank everyone who has even made it this far. Thank you so much for your patience. And to Dr. Driscoll, thank you so much for your hard work and all of the information you put out there. Your videos have been wonderful and have helped me connect the dots to what I knew was going on.
I have no idea if these posts made sense. I’m concerned about EDS, Dysautonomia, Mast Cell issues, cranial pressure, etc. Do you guys think I’m on the right track? How do I help doctors help me?
August 1, 2013 at 12:39 pm in reply to: I'm new to the forum and have some artwork to share :) #4021JenBParticipantThank you so much, everyone! *blush*
JenBParticipantAw thanks, you guys!
JenBParticipantThank you! ๐
JenBParticipantVery nice work!
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