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Hey 6 months isn’t bad to get a diagnosis (only kidding, I know you’ve been suffering much longer!) but I know you were considering EDS, when you posted back in March. I think what the Mild EDS might mean, is that you haven’t got blatant signs. I am one of those people too. I don’t have stretchy skin, I don’t have hypermobile joints, or dislocations/subluxations – but there is an underlying fault to my collagen production, it would seem and somethings causing me a lot of problems.
It would be good if the geneticist could shine some light on your particular cause (though half of the time, they only check to rule out EDS IV)
It has felt like forever to get the diagnosis. I have loose ankles, foot bones and small joint laxity in fingers, but nothing server. I have shoulder and wrist subluxation occasionally. I have another CT angiogram, 6 month check up, coming up for my “small” descending arch thoracic aneurysm. I can live with the small joint issues; it is the family history of 4 female relatives who have died from brain aneurysm that worries me too. My aneurysm is not in my brain, but if there is a collagen issue I would like to know especially if it is type IV. I was pleasantly surprised when the rheumatologist looked online to see if there was a connection between EDS and Eagles while I was in his office. It would have taken too long to wade through the information so I think he was going to follow up later.
I was told it could take a year to see the geneticist.
I had surgery for my right side Eagles Syndrome, and have done very well since surgery, for which I am grateful. That bone was compressing my carotid and giving me all kinds of nasty symptoms. The left side is longer than the right, but it is angled differently and not bothering me as much as the right side was. I will wait to see if the symptoms subside more before I have the left side done. I will keep you posted.
I hope you are doing well and that your symptoms are few.
Barbra encouraged me to get the “Philadelphia foam cervical collar” and it has worked great for me too. Thank you Barbra! It is going on 5 months now that I have been wearing a collar and this one has worked the best. You can get it on eBay very inexpensively, you can also buy the “coolmax liners” online too, which are needed for comfort especially summer. I used a soft cotton baby blanket at first and it worked fine (cut smaller) between me and the collar to absorb moisture for comfort. My suggestions for comfort are:
Make sure around your neck, you get the one that goes to your measurement size, but it will go bigger, so you have room to adjust for comfort. When you measure chin to sternum make sure you have your chin at the normal level you hold it for comfort when looking straight ahead.
Here is info for the collar in the USA. Hope this helps. Rebecca
How to measure info link
Ebay link Philedelphia collar
Coolmax liner link, make sure to order the size that fits the collar you order. I have 2 to rotate.
http://www.healthproductsexpress.com/Patient-Restraints-Supports/Other-Cervical-Collars/10075-ossur-americas-inc-ort12linerp-liner-collar-philadelphia-style-coolmax.htmlMay 24, 2013 at 2:17 pm in reply to: Please help unsure about diagnoses and how to proceed #3680
I think it is a bit more of an intensive investigation than just a blood test, and it is not limited to only the eyes, although there are thoughs who do tend to have their eyes effected more than other parts of the body. I dont think blood test are the only conclusive test done to rule it in or out.
I am glad to be of help,
I hope you are able to get the answers you need.
RebeccaMay 24, 2013 at 12:38 am in reply to: Please help unsure about diagnoses and how to proceed #3678
Here is information on Myasthenia Gravis
“Myasthenia gravis can affect any of the muscles that you control voluntarily. It can affect muscles of the face, hands, eyes, arms and legs and those muscles involved in chewing, swallowing and talking. Muscles that control breathing and neck movement also can be affected.
MG does not affect involuntary muscles such as the heart, smooth muscles of the gut, blood vessels, and uterus.
For most people, the first noticeable symptom is weakness of the eye muscles causing drooping eyelids or double vision. In others, difficulty in swallowing and slurred speech may be the first signs. The onset of the disease is usually gradual, but may be sudden. Symptoms may come and go over time. Symptoms often are not immediately recognized as MG, especially if they are subtle or variable.
Symptoms, which vary in type, severity and combination, may include:
Drooping of one or both eyelids
Double or blurred vision
Weakness in arms, hands, neck, face or legs
Difficulty in chewing, smiling, swallowing or talking
Excessive fatigue in exercised muscle groups
Difficult breathing or shallow respiration
Most individuals do not develop all of the symptoms.
Myasthenia gravis is often called the “snowflake disease” because it differs so much from person to person. The degree of muscle weakness and the muscles that are affected vary greatly from patient to patient and from time to time.
While weakness in the eye muscles is the most common initial symptom in MG, in some patients weakness remains limited to the eyes for entire course of the disease. These patients have ocular MG. Others have generalized MG where symptoms are present throughout the body, usually including the eyes. For instance, it may be hard to hold up an arm to comb your hair or shave or put on make-up. With a weakened grip, it may be difficult to open jars. Weak hips may make it difficult to get out of deep chairs or the bathtub. Legs may tire when climbing stairs.
People with MG are more likely to suffer from another autoimmune disease as well. These can include thyroid disease, lupus, rheumatoid arthritis and diabetes. With thyroid disease, an episode of hypothyroidism may trigger a flare-up of MG weakness.
If a person’s ability to breathe, cough, or protect their airway becomes insufficient, it’s called a myasthenic crisis. These patients need mechanical breathing assistance in a hospital for a period of time until their strength improves. While most myasthenics never experience a crisis, those who have trouble swallowing and talking are the ones most likely also to have trouble breathing. Before a crisis happens usually there are progressive warning signs that swallowing, talking, and breathing are becoming compromised.”
I hope this information helps,
RebeccaMay 24, 2013 at 12:36 am in reply to: Please help unsure about diagnoses and how to proceed #3677
Wow, you have been through a lot. I am new to the site as well. I myself have not been diagnosed yet with EDS either and am waiting for an appointment in September for the Rheumatologist. I don’t have a lot of EDS knowledge, I am learning as I go, but some of the things you are going through caught my attention and so I thought I would throw some things out for you to think about.
Crohn’s can lead to vitamin b-12 deficiency, that in and of itself can cause a large number of neurological and autonomic symptoms that might be a good place to start and eliminate that as a possible cause of some of your symptoms. Your doctor can test for that. Even if it comes back normal from what I read they can be false normal and a more sensitive test may need to be done. You can get vitamin b-12 sublingual tabs that you melt under your tongue, trans-dermal patches, or injections.
I may be dealing with this from the PPI I have been taking for so long. I have started having a lot of weird symptoms that the doctor want to send me to a neurologist who specializes in Myasthenia Gravis, which is something else for you to look up as a lot of people Crohn’s can end up with Myasthenia Gravis too.
“Vitamin B-12 deficiency affects the nervous system, leading to a variety of symptoms. Sometimes, these may be apparent before symptoms related to the anemia. Neurological symptoms vary and may be nonspecific (meaning that these are symptoms that can be caused by a number of different conditions). Feelings of numbness, tingling, weakness, lack of coordination, clumsiness, impaired memory, and personality changes can all occur. Both sides of the body are usually affected, and the legs are typically more affected than the arms. A severe deficiency can result in more serious neurological symptoms, including severe weakness, spasticity, paraplegia, and fecal and urinary incontinence.
Symptoms of anemia are due to the reduced oxygen-carrying capacity of the blood. Shortness of breath, fatigue, dizziness, and pale skin can all occur with anemia. In anemia, the heart is placed under stress since it has to work harder to deliver enough oxygen to body tissues. This can result in heart murmurs, fast heartbeats, arrhythmias, an enlarged heart (cardiomegaly), or even heart failure. It is important to note that not all people who have vitamin B-12 deficiency and neurological symptoms will also have anemia.
A deficiency of vitamin B–12 can also alter the surface of the tongue, making it appear shiny or smooth.
Finally, sometimes pernicious anemia is diagnosed in a patient with no symptoms. In these cases, it is usually found incidentally when blood tests are ordered for another reason.”
http://www.b12patch.com/about-b12deficiency.html symptoms list
http://www.cdc.gov/ncbddd/b12/table1.html cdc symptoms list.
Seizures and b-12 deficiency.
I hope this information helps,
RebeccaApril 3, 2013 at 3:16 pm in reply to: philidelphia collars vs Philadelphia Patriot One-Piece Cervical collar for summer? #3587
I was not able to “try on” any collars before buying, but I did do some more research and did decide to just go with the original “Philadelphia Cervical Collar”. I found information about measuring and sizing to help find the best fit for me and called the company before ordering to verify I had my information right. I want to be able to clean it too, as you mentioned, that made sense. I was able to find it online for a very reasonable price at a medical supply, as well as the liners. I paid about $50 for both with shipping, so I was pretty happy. There is a wide variety of prices you will find online for the collar itself ($17.-$50)so shopping around is a must. I was stunned and shocked at what the mark up is in the medical orthotic dispensing clinics for the same thing! ($150 -$200). Best to get it online for sure. Thank you again for your help,
RebeccaMarch 30, 2013 at 11:42 am in reply to: philidelphia collars vs Philadelphia Patriot One-Piece Cervical collar for summer? #3580
Barbara, Thank you for your thoughts. I would rather not waste money on something that is not going to work or help. I may go to the local medical supply store and try a few before buying so I know which one I want. With the warm weather coming skin comfort is an issue.
You mentioned the Philidelphia collar. It looks like it would give more support for sure. I am going to order one and give it a try. I know the soft collar has helped reduce some of my symptoms. Headaches not as often, not as much shoulder, neck and arm pain, hoarse voice or voice dysphonia is less frequent and less tinnitus has been reduced, numbness and tingling and pain in arms and hand as well is less there are others symptoms too but these are the main ones I will list. The tension and pain cycle felt like it had been kind of eased for a while and that without drugs I was so happy. I will let you know how the other one works.
PS, I notice that there are two different types of philidelphia collars have you tried the Philadelphia Patriot One-Piece Cervical? It looks like it might be cooler for summer?
Thank you Barbara,
I have been thinking after just 3 weeks of wearing the soft collar, although it has helped to reduce some of my symptoms, it does not feel like it is stablizing my head enough. I still find myself squishing it down, now that I am getting used to it. It bruised me at first.
RebeccaMarch 28, 2013 at 12:51 am in reply to: New, pretty sure EDS puzzle pieces may be fitting together #3574
The aortic aneurysm and trying to fit that into the big picture is when Google threw Ehlers Danlos Syndrome out and I came across Dr. Dianna Driscoll’s information. Trying to connect all these crazy dots, I did not need another syndrome at the time, but I figured I had to check it out. It was kind of scary, not just reading how my own issue may fit but for my kids too and my mom and her family medical history as well. There is still alot I don’t know and the learning curve is huge and I guess I could still be wrong, but I have got to see this through.
I know that I have small loose joints, all fingers hyper extend, both Thumbs touch wrist, both pinkies more than 90%, all tips of fingers can flex , my wrist fold more than 90% forward but back. I tend to break blood vessel in hands and fingers easy. Loose skin back of hands, elbows, My elbows and knees do not hyper extend they seem fine but they do get stuck and pop, my feet are flat and pronated, I have lax ankles and they can collapse sideways at times, but not sprain, I do bruise easy and feel it deep, , Bunions on both big toes, My hips are very rotatable and pop easily when I cross my ankles I can pop them, I can touch my toes to my forehead with ease. I used to be in gymnastics as a child and on the gymnastics team in high school mostly floor stuff, not a star athlete but I enjoyed it. I had no major injuries. I can touch my tongue to tip of nose (Gorlin sign), Flip eye lids inside out (Metenier sign), I have Waxy bumps on my chin and cheek I believe they are called Syringoma , very thin loose skin under eyes.
I have had 5 children all to term, all vaginal deliveries, 3 years ago had Prolapsed uterus/ prolapsed bladder/ prolapsed bladder. I had a Hysterectomy for the uterus, lift for the bladder and urethra. I have rectal levator ani spasms before the hysterectomy and still have them. I read that this can be part of pelvic congestion and may be part of “nutcracker Syndrome” I have always had very painful ovulation and wonder if pelvic congestion is part of all this. I have also read that it may play a part in migraine headaches and ccsvi? Anyone have any knowledge about this?
I have transient blurred vision and slight double vision at times, Eye floater. I have made an appointment with my Optometrists for next week. I have never had to wear glasses. I do wear age related reading glasses. I have big questions about my son though. My mom has keratoconus, my son has keratoconus and had it bad enough to warrant corneal crosslinking and intacs last May 2012. My other son at age 19 had surgery on both elbows last year for Osteochondritis dissecans, this is something pitchers might get in one elbow, but to get it in both is very rare and he is not a pitcher. He does lift weight though. My second born daughter has a rare condition they think is called Hashimoto’s Encephalopathy, and she is on IV steroids and IVIG she also may have a celiac issues but the biopsy came back negative. All my kids have flat feet. I could keep going about the issues of my kids but this probilby enough and it’s is getting depressing. I think I have given enough information as to why I need to rule out EDS type 5 or get a diagnosis of the type we might have and find out if this is the umbrella we are sitting under and see if we can find new help for some of our issues.
My Mom’s side of the family is where I believe this all came from. I know at least three females in my grandmothers family, her Sister, aunt and nice have died of brain aneurysm. My mom has always had a weak constitution. Her medical conditions are more than I want to list, she is obese, and has diabetes so I don’t know what things are related to those issues so I tried to get medical history before she was heavy. Prolepses, multiple hernias, carpel tunnel……..
I dont know what tomorrow holds but I know that what ever God has in store for me and my family, He also will give me the daily grace to bare up under it. Thank you for your time and any helpful infomation you might offer.
Rebecca (mommabutler)March 27, 2013 at 6:33 pm in reply to: New, pretty sure EDS puzzle pieces may be fitting together #3573
All this information is before I knew anything about Ehlers Danlos Syndrome and of its symptoms or associated issues.
My ENT did send me for a CT scan and the radiologist said my styloids were normal Bilaterally, I was so irritated and crushed as I knew something was wrong with me and how could it not show up. It was then that I asked him, my ENT, to feel in my throat and tell me if the anatomy at the back of my throat was normal, then he apologized for not feeling in there sooner and said it was not normal. He then sent me for a CT angiogram which showed them more clearly. The radiology report still reported them normal but longer than 3cm. I made sure to get hard cd copies of all my scans for my records. At this point I began to research and learning more about Vascular Eagles Syndrome and glossopharyngeal neuralgia and vegus nerve irritation. My referring ENT is looking for an ENT surgeon to remove them. He has pre screen about 10 and no one does the surgery.
My GP had me on “Zomig” for my migraines as needed but that stuff is nearly $8-9 a pill so I only us it when I am absolutely miserable. I can’t take “Opiates” as they make me sick and give me incredible stomach pain, So he started me on a “Toradol” as needed, but then that still was not really helping. I really don’t want to be on lots of medications so I have resisted a bit. I would rather get to the bottom of what is going on first and fix the problem rather than have a bunch of Band-Aid medication that have a lot of side effect you need mor medication to fix. He promised we would figure it out what is going on so I took the medication. He put me on a migraine prophylactic “Nadalol” It helped a bit with the headache and the irregular heartbeat but made be fell lethargic and has given me so many horrible side effects. I am currently weaning off of it after being on it for 5 months. It was not until they tried to increase the dose that is when things really got bad. Asthma symptoms came back, chest pain, Body aches, hot joints, depression, cold all the time, pain numbness and tingling increased, difficulty thinking, basically all the bad side effects ,I had them. I lost 9lbs. My GP has done a halter monitor in the past for the irregular heart beat but said I would not have to worry about it until I am older but it has been really been bothering me a lot more lately.
My GP sent me to a Neurologist who is a headache specialist who was not really as helpful as I would hoped he would have been, he did not think my symptoms’ were related to Eagles Syndrome but did not offer up much else other than medication. He did do an CT angiogram and MRI of my brain as I told him at that time that my headaches were in myfront of my face,top of head and brainstem. I told him I had been dealing with this now for over 11 months, with no real relief and just wanted help. He was not a man I really would want to see on a regular basis as he was dismissive about everything and said follow up with your family doctor. Here is the point at which I started doing research because of what was found on the scans.
“MRI Findings: No discrete lesion identified in the brain stem. There are multiple high signal intensity foci in the periventricular and subcortical white matter especially in the frontal lobes. A few high signalintensity foci are seen in the juxtacortical white mater and in the centrum semiovale. The high intensity foci may be associated with migraine. White matter demyelination disease is in the differential and requires clinical correlation. No obvious lesion identified in the corpus callosum or cerebellum. No significant mass effect, midline deviation or extra-axial collection seen. The ventricles and sulce appear within normal limits for age.”
“CT Angiogram of head and neck Finding: There is a slight prominence noted of the proximal aspect of the decending thorasis aorta which measures about 2.4cm Evaluation of ths region is limited and only the proximal aspect of the aorts is included in the scan plane and a ct of the chest is advised.”
Everything else was normal except the “Thyroid glands show slightly inhomogeneous contrast enhancement. This could be from small Cysts or nodules with the gland. The thyroid is not enlarged.”” The styloid process is elongated bilaterally and measures 4cm on the left and 3.8 on the right the tip of the styloid process is seen in close relation to the carotid sheath ant the level of the oropharynx, if the patient’s clinical symptoms correlate, this appearance could be related to Eagles syndrome.” Finally most doctors only read radiology reports. This has been a problem.
“CT Thoracic angiogram Findings: There is a fusiform aneurysm of the upper descending aorta with a maximum ap diameter of 2.9cm and transverse diameter of 2.8 cm. the diameter of the aortic arch proximal it the aneurysm measures 2cm. in diameter. The aneurysm is approximately 2.2cm in length. The remaining thoracic aorta is unremarkable.” I also have a 1cm liver cyst.
Everything according to the report looks fine. The scan cuts across the kidney and they did not mention something else I found that I wonder now if I should bring up to my doctor. From my research I think it is called “Nutcracker syndrome” I included a picture from the scan.March 27, 2013 at 3:42 pm in reply to: New, pretty sure EDS puzzle pieces may be fitting together #3572
Prior to all this I had been going to the gym 3-4 time a week , eating healthy, normal weight for my 5’ 3” frame. I had Migraines a few times a month then all of a sudden I started waking up with Mild to medium headaches most every morning, and I was getting Migraines 3-4 times a week. Then the symptoms just kept compounding and getting worse over the next while Throbbing Headache in base of skull and neck and eye area, Pain up the back of neck and face throb, even vision bounces, after I take all the medication, I still feel it as if it is in the background just not as strong, like the volume has been turned down but the headache is still there. neck ache most days, Up the back of my neck around the side, Base of skull to ears into my palate area, Pinch nerves in neck, Leaving head in flexed, down or rear position for too long gives me a head ache. What feels like Nerve pain running down my neck shoulders and left arm to elbow, little and ring finger, numbness in fingers, tingling, and achiness occasionally swelling. A little on the right side too, but not as much.
Frequent sleep interruptions with neck discomfort, Sore bruised throat, especially when I first wake, Excessive mucus in throat after eating that causes coughing and throat clearing, chronic Voice hoarseness, shooting pains to ear, left side of bottom jaw and lip can feel numb and pins and needles, Throbbing jaw, neck, face, palate, nose and eyes, vision throbs, but with no pain, Occasionally Pressure in throat that makes me want to cough, hot burning feeling base of inner ears, hear ringing/ buzzing/ blood rushing in ears , after a stretching, with arms up, short episode of dizziness, vertigo, seeing stars, vision dimming and tinnitus , pressure and ache in neck, face and jaw when bending over, Irregular heartbeat, hard pounding, sometime fast fluttering feeling, Occasional Vertigo, Room spinning, nystagmus, LPR Acid Reflux, ,Burning lungs, Asthma like symptoms, Difficult starting to swallow at times, I have to think about swallowing and getting food to go down at times, frequent choking food and liquids, or get in sinus, I have aspirated food and liquids, Feels like something is protruding in right side of throat, food will sometimes get stuck in back of throat, Pain during opening my mouth wide, yawning, frequent throat clearing, Cough, especially after meal, dizziness and light headed when standing ,Occasional Blurry/ slight double vision especially after looking down for short periods, frequent Pinch nerves in neck, stiff neck, Shooting eye pain to top inside corner of left eye, Heaviness one the left eye It seems more closed transient unequal pupils, Turning and flexing my head and neck, I have limited range of motion in neck. I tend to turn from shoulders and waist. I have adapted and done this for years because of stiff neck, pinched nerves, tension.
I have a feeling of something catching on or behind something else in throat/neck. This has been going on for 18 years, I get a painful spasm in my throat when this happens. I don’t know if my styloids or the hyoid bone dislocating or catching on the thyroid cartilage is hitting on a nerve or actually getting caught behind something like my hyoid bone or thyroid cartilage, Nerve, artery, vein, tendon? Usually happens during yawning, stretching, and turning head. I have to suppress yawns or I only do a half yawn. If I yawn, and stretch with my head at any kind of angle it can happen. But I get it at times just turning my head too. It causes extreme pain. Sever burning pain in neck and causes throat to spasm, from ear to thyroid area. This burning spasm increases the longer it goes on. My ear feels like it is on fire, it is very difficult to swallow and burns and aches. It hurts to move tongue during this time, hurts in back of throat just under tongue area, I avoid talking as this makes pain worse. It feels like my throat is closing. I have to calm myself and not panic. I have to locate the area that feels caught and manipulate my tracheae/neck/throat, by pushing, and pulling until I hear an audible “pop” sound, that is the sign that the releasing of whatever was “caught” and the pain subsides and everything is a bit sore/bruised, but relatively back to normal. It can happen on left or right side, it has never happened on both sides at the same time. The right side is typically worse though when it does happen. The left side has been more frequently lately.
My GP has me on “Tecta” PPI for Silent LPR, this has helped the burning in my lungs as this was the only sign I had that I was having any reflux. I had never had asthma before so it was weird to have lung issues all of a sudden. I am going to an internist in the beginning of April for a consult on an upper GI to make sure there is no damage. But now that I know about the possibilities of GERD in EDS this is a good thing. I may ask if I can get a lower GI too because bowel issues run in my family. My family and extended families medical history has too many things that fit with EDS, I may have stumbled on and found the common denominator in all our issues.