Hi unfortunately I wasn't on Savella long. I was weaning off my Cymbalta and going on the Savella. I wasn't feeling well so I just stuck with the Savella. I don't know if it was from the Cymbalta withdrawal.
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@amber3212 I will attach a link for great articles on new research on CFS. There is so much out there and I get lost in these articles. One always leads to another and so on. It is from Health Rising. I would recommend reading some of the ones that interest you. There is also one that is a series webinars on diagnostic info and such. Here is the link : https://www.healthrising.org/blog/2018/07/08/new-harvard-chronic-fatigue-syndrome-me-cfs-research-center-fulfills-crucial-need/
This is an excellent one, but I haven't had a chance to really go through it. : https://sable.madmimi.com/c/16005?id=3048475.10200.1.2f7f661f735babd5dcf5bc20ca2f41b6 It is the Bateman Horne Center
Hope this helps and I hope the links work…
Hi Kari, it is great to see you with your horse!!! I haven't been on in awhile. I have been focusing on the dysautonomia and all of that. It is frustrating. However, I am beginning to have my MALS pain again. I did have narrowing again in Aug of the Celiac, but sma was good so we decided to wait and see how it goes since I have all this other stuff going on. I go the end of the month for another scan. I may move it up.UGH!!! Well keep riding, it seems to do good for you because you look great!! Jill
Thank you. Wow, you have a lot of really intense symptoms…. I do believe there is some connection. MALS is a disruption in blood flow to the stomach and major organs. How can it not cause problems???? That is my thinking.
I think in my case, maybe MALS didn't cause dysautonomia directly. Definitely SIBO, and some stomach issues. The reason I say this is because I was really doing well. I didn't really have any POTS symptoms. My surgery was Feb. and I felt I would have been ready to go back to teaching in Aug. I was going out in May for my kids graduations, one college, one high school and events like that. Now there is no way I can even think of it. My son is graduating from ASU in Dec. I don't know how I am going to do it, but I will. My daughter graduated from there in May 2014. I did it. It was a long day for me, but I can't even imagine walking what I had to for hers. Thank goodness his will be inside. 4 yrs later, 100% worse, but not MALS only.
I only learned about POTS, and MCAS on a Face Book group, MALS PALS, and MALS Awareness. I had never heard of these. When I described how I was feeling people were saying to check into those. I did and was like, omg, that is me. A lot of the symptoms overlap as well so that sometimes makes it difficult. Plus there may be symptoms you might not even think of to mention, and they are listed in POTS, or MCAS symptoms, and that could help with diagnosis.
My ANA test was neg. and so was some others they did. That is what confuses me about dysautonomia, but I guess that doesn't matter. I would definitely consult a cardiologist about POTS. Do some research on POTS, that may help you when you go to dr and explain why you believe so. A neurologist also deals with POTS. You should try to find someone who is somewhat knowledgeable of POTS, but they may be hard. I would go to the appt. with everything you have done so far and a symptom list.
I am so happy to know that I have helped you in any way. It is Paying it forward, for sure!
Good luck and any questions just ask. If I don't get back right away, I may be busy with drs or just vegging for a bit, but I will.
Hang in there,
@annief thank you so much for this information. For my initial surgery in 2014 I had the chief of vascular surgery at UMC Medical center in Tucson, AZ. He was great. Unfortunately for me, he moved to Texas and became chief of vascular surgery at Baylor. I was going to follow up with him once I get my next scans. in 2015 I had stents put in, and 2017 balloon. My celiac is narrowing again. My surgeon at Mayo is awesome, but doesn't have MALS experience. I was also looking at Cleveland Clinic…this is great. Now I wonder if I can get in….he should remember me though, he published a journal article about me because my case was so rare!
Mine is a weird story. Nothing about my medical conditions is 'normal' or fit the profile. I just went to the er one night for pain meds cause it was really bad. They did ct scan and told me my arteries are narrowed and to see a vascular surgeon. I saw the chief of vascular surgery at a university hospital. I was lucky. I had no idea what to expect, didn't think a big deal. I was a special ed teacher and thought I would be back in a month. That was almost 5 years ago. It was about an 8 hour open surgery. ICU for 3 days then reg room. I was totally drugged up, don't remember much. The surgeon wrote and published a journal article on me since I was so rare. The diaphragm was not only crushing the celiac but also the SMA, which is extremely. It was a lot of work in there. My pain was gone but a very long difficult recovery. Then major stresses. My dad suddenly passed away and I was POA. I had 2 sisters who were extremely pissed and started 3 years of pure hell for me. My mom had beginning Alzheimer's and I was the one that would care for her when my dad passed, of course thinking that would be way down the road. She was all upset with my sisters, it was just terrible.
So the reason I say this is the stress during this basically killed my body. During this time, not even a year after first surgery my arteries narrowed again. I should have had a by pass but way to weak. Surgeon said I would never make it. So I got stents put in each artery. That held for awhile then, balloon. My original surgeon moved to another state. My second surgeon was good. I didn't know about the nerves and all that because I never researched or anything because I was taking care of my mother and dealing with them. I learned things on these sites. My mom passed and my sisters were taking me to court, basically my lawyer said to go because I had all evidence and I would win, but my body just couldn't take it so we settled in mediation and signed contract to communication. So sad. My dad said they would give me trouble, he was right. Anyway, The reason I tell you this is because I just got diagnosed with dysautonomia, POTS and MCAS. This is all from what my sisters did to me. I would have been able to go back to work and probably had the bypass so my condition is not from the MALS.
My surgeon now is from Mayo and he is awesome, but not to familiar with MALS. I may need to get back in contact with my original surgeon. He is chief of staff at Baylor College of medicine, but I know he will remember me…..haha
Well that is sort of my story summed up. Sorry this is so long. I never thought about the flying. I do have reports with dilation, and we were going to do celiac block, but all the dysautonomia stuff took over.
Well good luck to you,
Hi Kari, sorry it took me so long to get back to you. I have been busy with doctors and researching what that heck is wrong with me!!!Ha Ha. I am so sorry you are struggling with the pain again. I never had the problem of the weight loss. For my first surgery the doctor even said he wouldn't have suspected MALS because I wasn't loosing weight. I had always been skinny, but I had stomach problems for as long as I can remember so I think I just got used to it and adjusted. The energy is a huge factor. I am sorry.
I am still struggling as well. At my last vascular follow up my celiac velocity was up. It was 340 or around that. My numbers have been higher. My sma however decreased. I am weird. Nothing with me is normal. My SMA velocities go up and down. My celiac always seems to go up until some intervention. He said we could do a balloon again, but I thought we should wait. I have so much going on trying to figure out all this dysautonomia stuff. I have a "POTS overlap, whatever that is. My primary, who is amazing, says definitely dysautonomia and the pots is secondary to that and some mast cell issues. The problem is I have so many things going on there is no clear diagnosis except for MALS. I go back the end of Nov. for another ultra sound. I am not trying to be negative, but I will be shocked if it is the same or better. I am not sure what to do then. That will be the fifth time going in. I am still on the iv hydration at home. I do 2 liters a day, but I am still dehydrated. Nothing like I was though. I can't drink water. It makes me nauseous and hurts my stomach.
My daughter is getting married in June in Jamaica. Since we have no family and she always wanted to get married on the beach, why not. I am so scared I wont feel well. My goal is to be better, or at least able to just do the flight. We booked it so I have a few days of rest before the wedding. It is not a big fancy thing, but I want to be 100% for her. She was so close to my parents and I know it's killing me and must be her that they won't be there, I have to be strong. So that is my motivation.
Anyway, sorry I am going on. I hope you start feeling better. Is it your artery narrowing again, or the nerves or you don't know? I'm sorry. You are such a kind and giving person, you shouldn't have to keep dealing with this. I will be sending you some positive healing vibes. Take care.