DawnA

I have been doing a lot of lurking myself lately, but wanted to respond to this post. Gena I am sorry of your loss> I am so glad that your Grandma was not alone. I went through this last year with my husbands Grandparents. They died within four months of each other. We were able to be there with both of them. Watching someone die definitely is life altering, but it was very beautiful. I miss his grandparents terribly, I never had any. I am sorry of your loss. Your grandmother sounds like a wonderful person. I glad that you have found memories of her. I am sure this loss is very hard for you. I am sending love and good thoughts your way. I hope this does not make your POTS hole worse. Dawn A

Hi welcome to the forum! POTS is common among ME/CFS sufferers. IF you can get treated for the POTS you could feel a lot better and be able to be upright longer. If you are unable to get a tilt test , they can do a poor mans tilt. It must be frustrating not being able to get the care that you need. DawnA

WOW, I feel fat and healthy. I was pretty thin when I was 92 lbs at 5'4. Weight has definitely helped me to feel better. It also helps with fighting off colds and viruses. I hope the creatine works for you and you can gain weight on it. You definitely need it!!! At 125 lbs I feel very heavy and bloated. I swear 10 lbs of it has to be poop! Gross! My gut has become so sluggish. Now I understand why old grandmas talk about their BMs all the time. It is a big celebration when I go!!! I do not plan on weight lifting. I sure could use it since I have no muscle left. Concentric exercise, such as weight lifting, stairs, shoveling are what make me sick. I tested borderline for a fatty oxidation disorder which may be the cause. I will have an answer with the biopsy results, if the fibroblasts ever grow!! Maybe once I am on all of my supplements Carnator, creatine, Co-enzyme Q 10, thiamine and riboflavin iwill tolerate exercise better. I am hopeful since I am low on these and teh metabolic Dr said not to allow anyone to accuse me of a poor diet. Because that is not the case. Good luck on your soy adventure! Dawn

Hi Steph! Your assumption that the biopsy is done on the arm is correct. Mine was done on the inside upper part of the arm so it is discreet. The procedure is simple and I did fine after and would of been able to drive home. The only problem that you may have is could you react to the local anesthetic? Could that make your POTS worse? That is something to think about. You probably will be fine to go yourself but still may want company just in case. Wow, your arm is going to be famous. I wonder if they will take a picture of your face to. You will have to show us a picture of your brochure. Creatine, I just got done researching it. I am low on creatine and I am going to start taking it. The mito Drs at Clevalad recommend 5mg divided into two doses. The best source is http://www.nutrabio.com.....It is made form a pharmacedical company. This is where mito patients get theirs from. Interesting that CC is making it now. You will have to let me know what they tell you at Cleveland. Wow...4000 calories...you must have a super high metabolism! Do you mind my asking your height and weight. I was slightly underweight for a while at 110 lbs 5'4 37 yrs old. That was eating a lot. All of a sudden everything changed and I just gained 15 lbs. Something changed. Everyone says I look better. I hate that I do not fit into my clothes anymore. I would like to lose 5 lbs. Back to the biopsy. Mine was done January 18th and I am still waiting on the results. My fibroblasts have been slow growing. I just called and they said probably another month. I just wanted to let you know not to expect your results for a few months. Take care, DawnA

I hate the ER. I think I will have to bite the next person who tries to drag me there. JK lol. Dawn A

Unbelievable, Dr Low is the one who wrote the article on how POTS can be as disabling as CHF and emphysema. I wonder if he meant without treatment. Don't give up. You may have to see another Dr. I received disability. You may not receive disabiliyt on POTS but the symptoms of POTS are what are disabling. Good luck. I was not impressed with the neurologist that I saw up there either. He said that he saw absoulutely no signs of muscle weakness, but I am an OT. The way he tested my muscles was inadequate. It would only show severe weakness. I was shocked. Also, I talked about the panic attacks before I was treated for POTS. I assumed that he knew hyperventilation can be caused by POTS. I was being evaluated for neuromuscular disease. I was shocked when he talked about panic disorder to teh metabolic specialist I was seeing. I was offed more testing...repeat testing and I declined. So many Drs think that when we are treated and our HR and BP are controlled we feel OK. That is not always the case. I wonder if it has anything to do with the mechanism that causes POTs. Take care, Dawn

We are not in full control. But we do have some control with our state of mind. It doesnt hurt to be calm and positive when you have an autonomic problem, but this is difficult to do. We do not have total control of our moods either. Dawn A

Tearose, I like your suggestion mattress tester. It is the only one I qualify for. Maybe we could add sheets pillows and blanket tester. I wish they made adult blankets as soft as they do baby blankets. I want one of those soft blanket with satin in my size!!! Next time a Docter asks me if I am working...I will say as soon as I find a job as couch or matress tester. Dawn

I like what calypso had to say. We are predisposed to having autonomic problems/ anxiety and stress/trauma can trigger POTS. I do not believe anxiety causes our POTS. But it does play a role in our symptoms. Stress and uncontroled anxiety can definitely exascerbate out symptoms. I believe their is a major mind body connection. My daughter had the same issue after she choked on a butterscotch Candy at age four. It took her a long time to get over it. I never forced her to eat, because I feel it would of make it worse. I just encouraged her that she was OK everytime she panicked that she would choke. I also gave her a lot of easy foods to swallow. By the way she has POTS also. I feel she has had autonomic problems since she was born. Interesting!! Dawn A

I think the cause of a person POTS is heriditary. POTS is caused be many things. I know both EDS and mitochondrial myopathy are heritary and they both can cause POTS. Both myself and my 13 yr old daughter have POTS. Dawn

Thanks guys for sharing this valuable information. I guess I fit into the secondary POTS category. I definitely have neuropathy but also have symptoms of hyperadernergic POTS. I have not had any of the blood test. Interesting stuff. Dawn A

I third on the Kahler executive suites. It is the most reasonable hotel connected to Mayo priced at $69. I stayed there on both of my trips. I wanted to stay off ground at someplace cheaper, but I was afraid that I would not get comfort. I was able to walk to my room and nap when needed. Also, just to let you know the grocery store just went out of business. It was kind of expensive, but handy. Dawn A

Danelle I feel for you. I can totally relate. My daughter was just dx with POTS a year ago. before that my youngest daughter was diagnosed with Crohn's. It is soo hard when it is your children. My biggest concern is will I be able to help them when they are really ill. What if I am to ill to take care of them...don' t mean to add to your concerns. I hope some good things start happening for you...your SSDI goes through and your sons POTS is mild and he is managing OK. At least he has you to understand how he feels. I am glad that I understand what my daughter is going through and she was able to get an early dx. My husband is in denial and can be really hard on her at times. I always have to stick up for her. I wish he would listen not just hear one of these days. It is very frustrating. Best Wishes, Dawn

Here is a web site that has some awesome information on SSDI. I hope it can help those who are on the process of trying to get SSDI. http://pbcers.org/SSD-ALL.htm Dawn A (note to Dawn from Nina: I only edited your post to fix your link, which was missing colon between the p and the / )

Hi Dawn, Welcome to the forum! My name is Dawn too and I am also from Wisconsin. What part of Wisconsin do you live in? I am in southeast Wi...Racine. I also had to give up a career, but still am able to drive short distances...i feel for you! I would have a really hard time if I was no longer able to drive.I have not worked in four years and I finally gave up my OT lisense. Funny thing is that I have dream that I swent back to work and started treating patients without a lincense. I was soo afraid that I would get caught!!!! I do know of others who have benifited from using alternative treatments. There is a young woman on this forum who lives in Wisconsin who is doing well taking nutritional supplementation. HEr mom is a nutritionist. You received a lot of good advice here. It probably is a good idea to try and get dressed everyday. I usually do not get out of my pjs until the afternoon when I have to drive my kids to one of there activities. I would love to staay in them all day. I usually wear something compfortable like a cotton sports outfit. Counseling and possibly antidepressants are another good sugeestion. You have lost a lot due to this crappy illness. You have a lot to grieve. I have benifited from both of these treatments. I hope you are out of this POTSHOLE soon and can start enjoying life again despite your limitations. I hope you can some releive and start feeling better. Feel free to email me privately anytime. Best Wishes, Dawn Anich

Tearose, You are always welcome to ask me questions. I do not need a break from talking about mito...I am very convinced that I have it. I just need a break from Drs and dx testing. I once posted on the mitoldies forum on what are the benifits of having a diagnosis of mito since their is not much treatment and I could take the mitochondrial cocktail without a diagnosis. what are the benifits of being diagnosed? I received a lot of answers and I became convinced that I needed to pursue my dx farther. I wish I would have written down the information. Here are some of my thoughts: When you have a mito dx a Dr is going to take your complaints more seriously. Also you are routinely screened for things such as cardiomyopathy, diabetes.... When a mito patient is ill their is treatment protocol and specific labs that need to be tested. Most hospital do not do these labs. THis treatment could save your life or furthur progression. I know of people who have died in a metabolic crisis, because they were not dx. It was their family member who became dx at a later date. These are the only changes in treatment I can think of right now. If I knew that I had mito, I would give my children the mito cocktail. I could have them take it now, but it is very expensive and they are not much for taking pills. However, if I find the cocktail helps me a lot, I will give it to them anyways. I am concerned about my daughters having chilren. Mito is maternally inherited...meaning mothers pass it down to their children. (by the way you can not get mito from your father) The mutation could get worse and I worry about my grandchildren having a severe form of childhood mito which is fatal. I like answers and to research for them. I am very persistant, because I always like to understand why. This is where my faith needs to come in and I need to give it to God because my persistance becomes to much. Being told that your illness is psychological makes you want to prove that wrong. I have a bizarre gait which was diagnosed as a conversion diorder. I did prove this wrong with a abnormal EMG and muscle biopsy.....but they are still perplexed on why I walk like this. However some days I can walk very well???? As more people become dx with mito the better it will be for future generations with mito. Mito is a very specialized complicated field and their are few Drs who know how to treat it. More Drs need training, more research needs to be done and we need more treatment options. Pursuing a mito dx can be a long road. The pros and cons definitely need to be weighed. Having the lab tests and the skin biopsy should definitely be done if mito is suspected, but going beyond that definitely needs to be well thought out. If I was you I would definitely look into the anesthesia precautions for mito patients it may be something you want to follow. I received my note the geneticist at Mayo clinic. He did not rule mito out for me and diagnosed me with Metabolic disorder, NOS. SO I guess I will tell people that I have a metabolic myopathy, it is nice to have something to say. I hope this information helps you. Don't be fraid to ask me anything...we learn so much from each other and I am always willing to pass the word about mito. dawn

I have gone through this also. I often get a lot of junk mail from these friends. The only friends I have over the internet are those dealing with a chronic illness. As far as my social life goes, it *****. Two of my best friends moved away many years ago. Since I have been ill, noone seems to be interested in having a close friendshiop with me. I used to have a fairly descent social life. What hurts most is when people make plans with me , but they never follow through. THey say things, but never seem to mean it. Next time someone says, I want to have you over for lunch sometime...I want to say "Yeah right" I wish people would follow through with what they say. I am sorry you are going through this. It is so hard to not feel good and be lonely. There are days when I am feeling good enough to socialize, but I no longer have anyone to call. Like others here I can relate and I really feel for you. I think the best people to seek out are those who are dealing with chronic illness themselves. They understand and have compassion. On a negative note...I often get frustrated when I am around people. I do not bring up my health problems but sometimes they are obvious. I get sooo soo sick of everyone putting in there two cents. I know their intentions are good, but it is hard not to think of it as they aer assuming we are self-inducing or could be doing something to treat it. I am already frustrated enough and doing all I can to get better!!! Best Wishes, Dawn Anich

Here I some mito articles I received from the mitoldies web site. ADVERTISEMENT http://www.medscape.com/viewarticle/410871_print Extensive article on treatment of mitochondrial cytopathies. May require free Medscape registration to view. http://umdf.org/pdf/mitocyto.pdf Mito Primer. Requires Adobe Acrobat to view. http://www.umdf.org/pdf/mitoane.pdf Mito and Anesthesia. Requires Adobe Acrobat to view. http://www.ccjm.org/pdffiles/COHEN701.PDF Mitochondrial Disease in Adults: What We Know So Far. http://www.emedicine.com/neuro/topic580.htm Article on MELAS-one form of mitochondrial disease. May require free registration to view. http://biochemgen.ucsd.edu/mmdc/ep-toc.htm The Spectrum of Mitochondrial Disease---11 full length articles by experts. PDF files that require Adobe Acrobat. Three mito articles on the MDA site: http://www.mdausa.org/publications/mitocho...myopathies.html http://www.mdausa.org/publications/Quest/q64mito.html http://www.mdausa.org/publications/Quest/q65mito.html _____ From: Dolores Johnson [mailto:http://health.groups.yahoo.com/group/mitoldies/post?postID=N4jeQSKgS3DpbZ0x42ATG-HX5Apb-QvF12Hm6SAlYy9GybTldOR8FQS1_CrJKVL7Z9P3mUoqVPH33upB4Qa3sw

Steph, I am glad my info helped. For me the muscle biopsy was painful. My scar is pretty ugly too YUCK. I wish they could of picked a site above the pants line. I can say that I do not feel very patient myself either. I used to take so much pride in how much I could get done in one day and I really enjoyed physical activity. i am slowly changing my interests. It hard, because I never enjoyed activities that involved sitting around. Tearose, Your question regarding dx mito is very complex. Even the most renowned specialist have a hard time dx it and it is the specialist opinion. Their is no diagnostic criteria. Mito disease is very young in medicine. A normal DNA test does not rule it out, because their are so many complexes that have not been found. TThey can take a piece of your muscle a look for a DNA mutation that has not been discovered, but it is worse than finding a needle in a haysake. It is common to wait a year on results, which will probably be inconclusive. With both sons with a history of malignant hyperthermia... mito should definitely be looked into. I know...this is so hard to bite off and chew now try and swallow!!! A muscle biopsy is the last resort in looking for a diagnosis. First they would want to look at mito labs and a possible skin biopsy. The tricky thing is that normal lab results are often common with adults with mito esp in the beginning stages. I have a friend with confirmed mito and has had a lot of progression, but her labs are still normal. The Drs are perplexed. Lab test can be normal for a long time then suddenly become abnormal. I now have a few abnormal labs and a mildly abnormal muscle biopsy, but not enough information to diagnose mito. My last resort is a fresh muscle biopsy. As of now I am taking an emotional brake and will not be going through anymore diagnostic testing other than seeing a rheumatologist. I will post some information regarding how to diagnose mito. Dawn

My thoughts and prayers are with you during these difficult times. Dawn A

That is good news....I hope good new cont.... It is wonderful that Emily has such a supportive mother who is able to help take care of her and give her TLC. there is nothing better than a mother TLC to help heal. we all hope you are back soon Emily and that this ordeal is over with soon. Best Wishes, Dawn

Thanks for the update Jessica! This is good new..Your son will have a playmate and you will be able to hand down clothes/toys. Another move...how tiring. Take care of yourself and the sweet little thumbsucking guy inside of you. Best Wishes, Dawn A

Hi Tearose...you are not stretching at all!!!! I looked up acanthocytosis. It stated that it can be associated with neuromuscular disease. It can also be related to hepatocelluar disorders...liver problems. live disease is associated with mito. Also, acanthocytosis is a form of anemia, which is metabolic. My answer to your question is YES!!!! Mitochondria are not in our red blood cells, but a mitochondrial problem can affect red bloods cell...it is a dominoe affect. I will post on the mito forum and ask if anyone has acanthocytosis. Have they ruled out liver disease? Dawn Anich

Steph, I just remembered taht you were diagnosed with CMT. Did they test for mito on your muscle biopsy. I am still waiting on the results of my skin biopsy. Hopefully I will get the results in the next two weeks. Dawn

There are no specific symptoms for mito. IT is suspected when multiple systems are involved. The rule of thumb is "any age, any disease, any progression" Since it affects your cells it can cause any disease. The brain, heart and nervous system are often affected because they require so much energy. Mito patients are diverse showing a different complex of symptoms even in the same family. Some common mito symptoms are: CFS type symptoms muscle pain and or weakness easy muscle fatique ptosis autonomic problems GI dysmotility loss of hearing cardiomyopathy migraines seizures diabetes any atypical disease I hope this information helps. For more information go to http://www.umdf.org\