Maxine Posted September 17, 2006 Report Share Posted September 17, 2006 Hi,I just needed a few opinions----or possibly a little insight on this. My POTS symptoms have been progressive, but in a different manner then usual. In the early winter of 2005, and 2006 I had another hyper-adrengic spell, or at least it felt that way. Then after the hyper-adrengic feelings wore down from a little help from klonopin---(very tiny doses---1/4 of .50 on average), I noticed I crashed with severe fatigue---worse then my usual. And while I had some break through tachycardia for a while----when I crashed my heart rate was more at a fixed rate in the 70s mostly. My BPs have been running very low. I was mis-diagnosed with hyper-adrengic POTS for a few months-(no testing was done to prove this---so I requested catecholamines to be tested-----in the normal range, but triple the dopamine levels, I have good old fashioned regular POTS---ANS dysfunction.Meanwhile, I'm trying to figure out all my other junk---all my upper spine issues/instability, chiari--(if that is truly what it is---small posterior fossa with a retroflexed odontoid bone----which some NSGs say I have this, but some say I don't), congenital cervical spine stenosis---disk disease, cervical/cranial instability---and finally the EDS. It' sounds a mess, but I have seen people with a lot more going on. It's just confusing trying to figure out which Doc is right, which adds more stress to the mix.While this is going on I had another MRI to see where I'm at. This time the radiologist did not mention all the other issues at all----(although at least three radiologists have differt reports about all the other issues I listed above). So weird. Anyway, he did specify that I need to see a neurologist----(correlate clinically) due to s few tiny non-specific periventricular white matter lesions. He said these could represent sequela of chronic small vessel ischemic disease----and he also said he could not rule out a demyelinating process based on this appearance.I don't know how long I've been telling Docs that I have chronic low HDL cholesterol. My LDL has been just in the acceptable range of borderline, and my triclycerides are high---but just in the last couple years. I cut back on a refined sugars and it helped that out a bit. My LDL is 126---HDL is only 27---- , and triclycerides were 205----down from 260. I could not tolerate statins. The one PCP said keep going with my diet, and we will check again----it's now about time to check again. I have had some weight loss, and stuck to my diet fairly well-----a little chocolate once in a while----not much at all. Other sugars----I did very well---hence a few pounds were lost. I'm concerned about my chronic problems with low HDL that has plagued me for years----even when I weighed 119 pounds. I have always followed a very low fat diet----one doc said I didn't get enough good fat in my diet. Chronic low HDL can occur in people on very low fat diets. But refined surgars raise the triclycerides----even a small amount.These lesions are very common with MS----very typical to have lesions in the periventriculat area. I also have them on frontal lobes from past MRIs. My problem is that I have so much going on with my spine, and also have myelopathy diagnosed in 2005----I'm not sure what is causing what. All I know is that in the last few weeks I have increased headaches in the back of my head----and my fatigue has not really recovered much. I think I crashed hard in the winter----but in the summer showed some slight improvement---unless I went out in the heat. If I was exposed to heat I had a rapid increase in symptoms.I feel completely burned out on all this----and my nerves are completely rattled.I called my brother today to see who he would recommend from The Toledo Clinic. He handles their computer support----it's a huge clinic -----three huge buildings---and an out patient center. He told me about a group of neurologists.Monday I have sleep study, and I'll set up an appointment with the neurologist the same day.This may turn out to be nothing-----but from what I read it should be checked out......The reason I posted some of my history here is because when I was reading about the lesions it mentioned issues with high cholesterol----but it also said with these types of lesions there is usually more involved then a lipid problem in younger people---and more common to see a demyelation process---and it even mentions retroflex odontoid process---(pressure on the brain stem)---so I thought it might make a little sense to post what has been going on with me the last couple years.Anyone know anything---or heard anything about this?Maxine :0) Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted September 17, 2006 Report Share Posted September 17, 2006 I don't know the answers to your questions but I have heard and read lesions can mean something, sometimes nothing. This is because only a portion of the population has brain scans...so more investigating and ruling out of other things needs to be addressed.But I am no expert on this. I was told the same thing about MVP when I had an echo years ago. Only I have MV "insufficiency" as opposed to prolapse.Anyway, just wanted to respond and say good luck with your sleep study.Sophia Quote Link to comment Share on other sites More sharing options...
corina Posted September 17, 2006 Report Share Posted September 17, 2006 maxine,it is not that i can help you or answer your questions, you have so much going on. but i wanted you to know that i am sorry you're having so much trouble. i do think it is important to let this get checked so that you know exactly what is/isn't going on. it's great to have your brother helping you find the best possible neuro for you!i hope things will work out well for you and that you soon start doing better!corina Quote Link to comment Share on other sites More sharing options...
labas_2u@shaw.ca Posted September 17, 2006 Report Share Posted September 17, 2006 Hi Maxine:I don't have anything to offer in the way of information or advice. But, please do follow up with the neurologist and keep us posted... It sounds like there is a lot going and hopefully a good neurologist should be able to sort some of it out. Good luck!!!Maggs Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted September 18, 2006 Report Share Posted September 18, 2006 Hi Maxine:You may want to ask the doctor about inositol hexaniacinate http://www.thorne.com/pdf/journal/3-3/inos...aniacinate'It is a form of niacin that can be used to raise HDL levels. However, it can cause liver toxicity, so you have to monitor your liver enzymes while you are taking it. The main thing, however, is that it could cause vasodilation, so it could make your POTS worse. Another option is a different extended-release niacin: http://www.niaspan.com/High_Cholesterol/Ra...sp?kwcid=Ghdl34http://health.yahoo.com/experts/heartdisea...hdl-cholesterolHere's something I just found:http://www.loweringcholesterol.net/herbal-...ies/policosanol Quote Link to comment Share on other sites More sharing options...
kmpower Posted September 18, 2006 Report Share Posted September 18, 2006 Hi Maxine,I am sorry you are having such trouble. Periventricular white matter lesions may be associated with many pathologies, but, even if the "official" dx is MS, treatments are varied. Think or ask about total gluten avoidance and getting your vit D levels to normal. I could PM you more information once you get a diagnosis, if you like.Time-release niacin has some potential adverse effects on the liver. Many nutritional-oriented MDs will not use it. But pursuing niacin as a therapy has merit.Best wishes.OLL Quote Link to comment Share on other sites More sharing options...
Darlene Posted September 20, 2006 Report Share Posted September 20, 2006 I started out having a few lesions on the 1st MRI. The 2nd MRI showed several lesions. I was seeing Dr. Barber at the Toledo Clinic. He didn't do anything for me, but give me motrin 600 for pain. Dr. Grubb recommended I see Dr. Tietjen at MCO. I made an appointment with Chris Utley (Dr. Tietjen's partner) last Thursay, couldn't get in to see Dr. Tietjen til November. I told Chris about some problems that I had been experiencing. She is suppose to be talking with Dr. Tietjen, and then calling me. Chris said that they would be sending me to a nerve specialist or an MS specialist. I have peripheral neuropathy, but from what I do not know. I have only been experiencing this since January. I was diagnosed with POTS Dec, 2004. I think you would really like Dr. Tietjen at MCO. And no she is not a student. Quote Link to comment Share on other sites More sharing options...
Maxine Posted September 20, 2006 Author Report Share Posted September 20, 2006 Thanks for the support and advice------------ Today I got back from my sleep study----I finally slept for it thankfully, but I don't think for more then 5 hours---I can't remember. Then today I had to have the nap study------boring.............I'm not sure why I'm having this study------When I tried the first one they said I had loss of oxygen in light sleep, so I should complete the study. As far as my cholesterol issues-----I have increased omega 3 fats, but will need to do it on a bigger scale, and introduce something else to help, just don't know what right now. lThomas, that article was interesting on Policosanol------something I can check out. I'm just so sensitive to everything I put into my body. I'm convinced there is something else in the vitamin D that was ordered by prescription---I just didn't react to it well. Whatever they binded it with-----------not sure, but I know I have to do something----my levels are less then 7..... Hopefully my PCP will get the referral to the neurology office I called. I'm not overly concerned, but I do think the periventricular white matter lesions need to be looked at. This part of the brain is a favorite hangout for MS...... It's very hard to tell as I have so many of the symptoms, but POTS also has simular symptoms.Today while taking my shower after the sleep study my legs turned dark purple, and the veins in my feet were so loaded they looked black. All of this is so overwhelming to me.....Then we have the stalking incident with the nurse........... Some days I muddle through, and some days i'm depressed beyond words---I guess on the days I muddle through, I'm functionally depressed.I guess where I felt I was safe---I don't feel safe anymore......... I just don't understand some folks-----------how they find entertainment in doing that to people. No life I guess............ Thanks again-------------------->Maxine :0) Quote Link to comment Share on other sites More sharing options...
Maxine Posted September 20, 2006 Author Report Share Posted September 20, 2006 Thank You NorthernDarlene, I went to one of the physicians at the MUO neurology center and was completely dismissed of everything---can't say his name on here---but he is in with that group. However, I did hear Dr. Tietjen is nice---so maybe a possibility. I hope I'm taken seriously---I can't take much more of this--------------- Maxine :0) Quote Link to comment Share on other sites More sharing options...
Darlene Posted September 20, 2006 Report Share Posted September 20, 2006 All of my lesions are pariventricular white matter lesions. How do you know part of this brain is a favorite hang out for MS?About mentioning names on here, I'm sorry. I haven't been on here in a long time. I didn't know you couldn't mention names or I forgot. I will PM you with a name next time.What ever Dr. you choose. Make sure you tell them you have dyautonomia, so they are not confusing your symptoms with something else. Make sure you tell them everything you feel, whether it's autonomic related or not.But remember, lesions can mean lots of things. Haven't figured out what my mean just yet.Keep me posted. Quote Link to comment Share on other sites More sharing options...
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