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I had no idea M.S. patients tend to have IC, but I recently have found that Mast Cell patients tend to as well. Over the counter strips are a terrific idea for this! I was not aware of such a product, but I will be keeping a look out for them the next time I am in a pharmacy. Over the past week I’ve made the mistake of pushing my luck with tea and am paying the price. 😉
Thankfully I have found a new mast cell specialist to look into my case and feel pretty sure that we will eventually be able to confirm mast cell activation syndrome with testing. For now just have an H1 and H2, but I visit with him Mid Jan and will hopefully end up on a mast cell stabilizer. Maybe I can convince my family doctor to write a script for Xanax or another benzo. I can not wait to see what your treatment trails are!!
A mast cell specialist whom specializes in Mast Cell Activation Syndrome, the kind I believe Dr. Diana might have, feels I have enough symptoms to investigate my case. I will see him, Dr. Afrin, Jan. 14th. I am so thankful for all of the work Dr. Diana has put into this. I never would have investigated MCAS if I had not found this site.
Finally got in with the endocrinologist last week and the small amount of lab work they could perform has been read. They have found that my thyroid dysfunction is autoimmune after performing a TPO antibody level. In 4 weeks they will test my pituitary further and look for antibodies there as well. I have been on pituitary supplements for 3 years so I have to get all that stuff out of my system before they can check levels. They could verify that my pituitary is still functioning via those tests which does seem to indicate autoimmune rather than tumor. At some point I will get a few of my MRI pictures posted in case anyone else finds themselves in this situation. It’s very hard to on a standard MRI, but the pituitary MRIs make it very clear.
Mast cell specialist says I do not have mast cell disorder because I do not experience Anaphylaxis, but do have severe environmental allergies. He will have me starting allergy shots next week. He also says I do not have EDS because I’m not freakishly hypermobile and I’m not tall and lanky. Important to note here that he studied marfan syndrome, not EDS. It’s very obvious to myself and my orthopedic/pain doc that I am at the least hypermobile type. With the older women in my family experiencing heart and colon issues… maybe a worse variety. I am short and chunky as are they. We range from 4’11 to 5’3.
I had trouble as well. The first time I downloaded the form it was fine, but then I rebuilt my computer and downloaded it again a few weeks later. Now it’s funky. I don’t know if it was edited or if I’m just lucky. Anyway, I changed a bit of the formatting on the page to fix it. I’d be happy to send you a copy of the one I repaired. Hopefully it opens ok on Dr. Diana’s end.
I have the needle prick sized red dots, white freckles, cherry angiomas, and have seen an incrase since my illness took a turn for the worst. I have also noticed more typical moles and freckles since that time.
Appointment with a mast cell specialist Wednesday 10-17-2012. Still no word from the endo office. Either I was refused a referral or they are super busy.
Link between lymphocytic hypophysitis and mast cells if anyone is interested. With the work Dr. Diana has put together this does not surprise me at all. It makes total sense. How to stop the mast cells though… http://www.ncbi.nlm.nih.gov/pubmed/11888089
Just returned from my neurologist appointment. Basically the stem attached to my pituitary gland is twice the size it should be. It could be a tumor or it could be lymphocytic hypophysitis, which is inflammation of the pituitary gland due to autoimmunity. The symptoms are very similar with both, but they are treated differently. If it’s a tumor they remove the pituitary gland, if it’s autoimmunity they use steroids. Either way there would be tons of side effects. Go figure. 😉
Next step is to find an endocrinologist and see what they say about it. I’m not sure at this point if it would be worse to treat it or not treat it. I am incredibly unhappy with my endocrine system function as it is, but the side effects could be quite severe. Is joint hypermobility considered an autoimmune illness? My immune system function is very poor.
Well, empty sella does not appear to be my issue, but they do suspect lymphocytic hypophysitis. I have a thickened middle third of infundibulum to approximately twice sagittal dimension of more proximal and distal thirds of infundibulum. I’m not exactly sure what all of that means just yet, but hopefully I will learn that today. I lucked out and will get to see a neurologist in a few hours. Somebody canceled their appointment right before I called them. Saved me 3 weeks of worry time. I will update later when I learn more.
What an interesting topic! Since being a small child I have hated sleeping on my back. I feel like I can’t breath and have a general cruddy feeling any time that I do. I almost always sleep on my sides, but sometimes on my stomach. I had to have two different sleep studies and they were a bit irritated that I couldn’t sleep on my back. If I had realized this was an issue for us I would have forced myself to lay on my back for a while to see if they could pick up anything with their equipment. Two birds, one stone. Shucks!
I would love to be of some help, but I am new to the site and am not familiar with most of the terms either.
As for a doctor, I lucked out with a pain doctor because that is my most debilitating symptom. He actually treats quite a few people who are hypermobile. His explanation for that is that he is not in a hospital environment and feels like people end up in his office after they have been through a variety of other doctors. Due to that he tends to see people a typical pain doctor can not help because they are not aware of the symptoms. He has taken on the task of learning each individual and what is going on with them. He has had so many such experiences that he properly diagnosed me on the first visit and had a plan of action ready. He also has meetings with a group of doctors that talk about hypermobility. I have no idea how to find out who those doctors are or what their specialty is. He says that he is always on the look out for hypermobility right away. When he finds it he immediately looks for pain, sleep problems, hormonal imbalances, and depression/anxiety. Those are the 4 things that he and his group of doctors have noticed are common in the majority of hypermobiles that walk through their doors. Not all have all 4, but most have at least 2 or 3. I have all 4. Those cause large variety of symptoms, but at least they are acknowledged. I have tried to find a doctor that is closer to my home and workplace, but have failed. No other pain clinic in the area will see me, nor any of the rheumatologists, so I continue to make the drive. It’s worth it.
I relate to many of your symptoms. My ankle/knee issues have vastly improved since working my legs out a lot (hike large distances and treadmill). My doctor believes that one of the best things for hypermobility (just the elasticity of ligaments part) is to build up the muscles around the area as much as possible so they can better hold the body together. It’s not easy and sometimes not even possible and it would need to be a life long thing if it is possible. It has helped me a lot. My ankles no longer trip me when I walk, and my knees are no longer popping and they no longer feel like they slide to the sides. Once we squared away my pain and asthma I have been able to work out. It was slow going though.
The electrical feelings and numbness sound neuropathic. 98% of my pain is now nerve pain and most of it is in my upper and mid back. Without medication it slowly creeps into the rest of my body. I rarely have muscle pain since working out, but my nerve pain is severe enough that I am disabled without treatment. In my case opiates simply do not work. I am currently using Xyrem and compounded Naloxone for nerve pain. When I last spoke with my doctor he said he’s found that the majority of hypermobile he has treated respond very well to Xyrem for pain and sleep issues regardless of if the pain is muscle or nerve, but not all respond. The theory is it does well with muscle because it releases growth hormone which is thought to help muscle repair and nerve because poor restorative sleep leads to nerve pain. Xyrem offers restorative sleep for longer periods of time and much quicker. Naloxone is a bit more unreliable and only works for nerve pain. He estimates that it works in thirds. 1/3 get no relief, 1/3 get some, and 1/3 find it to be a miracle. I personally fall in the 2nd bracket. It helped me a ton when I lost access to Xyrem, but now that I have it back I’ll be ditching Naloxone. Without Naloxone I could do nothing at all so it was a vast improvement to be able to hold down a job and continue my exercise. I still had moderate pain every day though. Xyrem, had me at zero – 3 pain for 5 good years. I just want to note here that I’m not suggesting either medication, these are just my experiences and the findings of my doctor. Both medications are way off label and insurance can be particularly crabby about Xyrem (It is EXPENSIVE). I almost never hear either of these medications mentioned on any EDS site I have been to. Xyrem is more common on Fibromyalgia boards because it was found to be very successful in those patients during their studies. Sadly, the FDA decided they did not want that many people to have access to the medication. And I understand that to an extent.. it is GHB and it was used as a date rape drug for a period of time, but there are not many good fibro options, so I am sad for them because of that.
I also share your cold hands/feet, I am somewhat intolerant to heat, and also very rarely sweat. To get my hairline damp I typically have to hike a strenuous mountain for a long period of time(4+hrs). I never sweat on a treadmill or if I am just walking and certainly not from day to day stuff. I have assumed in the past those issues were due to my low pituitary function (thus low thyroid function). My body temp is in the mid 96 range, pulse and blood pressure are low. I also do not tolerate bright light or loud Noises. Brain fog for sure and short term memory loss, but I have noticed those get better when my pain is sorted out. My skin is a bit stretch too and I am slow to heal. The tiniest little scratch becomes infected and often scars. Very quick to bruise. Allergies galore. I am scared to death to have children because I was told by my gyno that I’m high risk enough with this condition that I would need a doc that specializes in high risk pregnancy. Oh, and I also feel like I pee a hundred times a day, lol.
I don’t have many answers in relation to this site, but hopefully just knowing someone else shares some of your symptoms will help. Sorry, that was a mini novel!
Update: My doctor was happy to order the MRI (he treats quite a few hypermobile). He understood what I was asking for with no problem. He is not sure if my insurance company will give me a hassle or not (we have not had the best of luck with them over the years), so he approached it in a generalized manner and is prepared to order a close up of the pituitary if there are any irregularities. Not looking forward to the cost, but I am so sick of the hormonal issues that I am experiencing.
I have always had a low body temperature. Same for my sister and mother. The typical is 96.5 – 96.7 for me. One terrifying night I awoke to a 95.4 degree temperature. I really thought I might die that night. My husband helped me into a warm bath and I eventually made it back to my “normal”. I couldn’t stop shivering and chattering my teeth. That has only happened once and it was a few years ago. I have no idea what triggered it.
