bbdeezy

There is a Dr listed on POTS Place that is in Morgantown WV who is really wanting more patients but that would probably be further drive then to Cleveland.I wrote to him once and he said that he would see me but I only go to WV 2 times a yr to see family so I am just praying for an understanding well educated Dr here in MI.

I just seen a Dr in Michigan at DownRiver Cardiology who is not a specialist on POTS but is interested in it. He gave me Midodrine after trying a few others when first diagnosed that didnt work....well...I also have RLS and Fibro and man did the midodrine make my legs cramp worse.When I called him on this he stated that it shouldnt have effected the legs but since the med actually was to help the blood from pooling in the lower extremities it made sense to me that this could happen...well I havent went back on it due to fear of the cramps starting again. They are bad enough already that I use a durogesic pain patch to take the edge off the pain. I am just learning that nothing is helping me with my POTS but to suck it up,deal with it on a day to day basis.....and pray for a miracle

Hello , I had a complete hysterectomy in January and the anesthesiologist from Lansing was NOT willing to come do the surgery at our Hospital in our little town due to the complications of the POTS plus the sleep apnea. They didnt know alot about it and at that time neither did I (as far as effects of anthesia ) I did awful for the first 3 months after surgery as far as POTS spells. there were days that I didnt even get off the couch but to go potty. Definitely read as much as you can and give all info to your Dr before the surgery

I see a few people in here and on Dnet from Michigan and i went to see Sid Gillman at ann arbor and his office had not a clue about POTS and said all my symptoms were sleep disorder related. I am tired of my family Dr and heart Dr looking for " OTHER" reasons for my symptoms instead of recognizing and not looking at the POTS handouts I give them. I am wondering what Drs you MICHIGANders see to assist you with coping and medicating the POTS. I am needing to stay within state because crappy insurance doesnt cover out of state . and i am DESPERATE !

hello Newbie Well as to homeopathic,............havent tried that. I am not on any meds at all for POTS. As far as Disability In past 3 years since DX i have worked 3 jobs only to have to quit and stay home between each one til episodes seemed to have went away then when I would start working again after a few weeks they would flare again. So I quit altogether and stayed home for a year then applied for SSDI and was approved FIRST time with no lawyers.Since i stay home and can get rest when episodes begin I have only passed out maybe less than 10 times in 16 months.Not sure if anyone else can feel these coming on but I get pressure in my ears and a slight headache when they start. As far as getting disability...still do not know on what grounds they approved it list of other illnesses I have\ Restless Leg Syndrome ( also very bad in arms) Sleep Apnea Hypersomnia Depression Anxiety attacks IBS Vulvodynia Hypothyroidism Bbdeezy in Mi

I filed Aug 31 this tr and approved today. so 3 1/2 months, i am not sure whether it was POTS or the depression/panic attacks that got it. But who cares.....Im both! Have you called to see if there iis anything you can do to help them as far as Soc Security? I heard that helps. I knew it was gonna take 120 days anyway so the actual waiting just kicked in. But it has been nerve wracking as far as the anticipation.

Well I just got the greatesst Christmas present today!!!!!!!!!!!!!!I was approved for my SS disability the first time . I did it all my own ( well Moms prayers helped Im sure) but i was shocked. I had an attorney on the backburner so to speak just to be ready for appeal. I am so excited. I havent gotten my letter to know if its on the mental or actual POTS yet but i will update when I find out. I know i prayed over those papers before i sent them in and when i went for my exam i prayed i would find favor with the examiner. So all you who are trying.................dont give up! Belinda in MI

I am about to have oral surgery and have 7 teeth surgically removed. I will be under anesthetics. I am wondering if any one has had any problems with POTS while under and afterwards.........as far as making pots symptoms worse. I am really dreading this as I have had a good 2 weeks now with very few POTS symptoms. PRAISE THE LORD for that.I also have sleep apnea and RLS and they will have to strap me down before they start and I know that will cause a panic attack because I cannot cope with being bound down.thanks ahead for any suggestions

I just found out last month that my second cousin was just also Diagnosed with this. She was very surprised that her grandmother knew anything about it. When I was diagnosed I sent paperwork about POTS to all my family members. I am not glad at all that another family member has this but it is nice to know that my family will realize that this is a very traumatic desease and that I am not as quacky as they might of thought I was. Knowing someone else in the family had this POTS seemed to make it more real for me. I know that sound wacked out but....................

I have the same leg pain and cramps ALL TH Time......but they are worse at night. I was diagnosed with Restless Leg Syndrome which the Dr at Cleveland Clinic says is associated with the POTS. I take 50 mg of ELAVIL every nite and along with a few muscle rubs from hubby each week it helps . I have had them bad this week and only sleep about 3 hrs a night which does make the POTS symptoms worse. GOOD LUCK

hello all and i hope someone can help. I am in Michigan and my family doctor will not treat my POTS so..............i am off on a serch. I cannot go out of state due to medical coverage and i am wondering what type of doctor do i even start with. I have went to the ones listed at ann arbor to no avail...they wrote it all off due to my sleep apnea and hypersomnia. Of which i am not treating bc i cannot wear that mask due to claustrophobia and ins doesnt cover machine anyway.so can someone help me as to what field i even begin searching in? Cardio? Neuro? I also have Restless legs and thyroid and stressed tendon syndrome.

I was diagnosed in Jan 03 after having off and on symptomatic days all my life and had been told " I was Lazy" all through my teen years. I was symptomatic for 9 months starting in Aug 02 and in dec 03 I returned to work after being off a yr. Then 8 months into the Bank teller job and became symptomatic once again. So it is off and on with me.I have been home over a year now and still symptomatic. Dr In Cleveland when diagnosed said he believed I was born with this problem. I do not pass out as frequently now that I am not driving and know to NOT look up or down or turn and look off to the sides. ( i do forget at times and i pay for it the next day)...but I also have Hypersomnia, sleep apnea, RLS, so it could also be attributed to these problems as welll......I hope and pray better days are ahead but not relly counting on it.

I guess I am trying to get my ducks in a row JUST in case. Neither charge the fee IF i get approved on my own but they want to be ready rapidly for appeal if I dont get the initial approval on my own. They say it beats doing all the paperwork after a denial and having that much longer to wait.

Okay.....I have filed for Disability and I am wondering what Attorneys anyone reccomends. I have Contacted Binder and Binder and they have agreed to represent me but I have also spoke with Allsup ( they represent only on depression and anxiety issues)! Has either of these been used and anyone can give me advise on either? I have had a " Mental" exam with a SS phychiatrist so I am wondering if this is then what Social Security is looking most for on my application. I am at a loss even thouigh of course I listed depression and anxiety on my application...although its mostly as a result of the POTS and how it has effected me mentally. Has anyone else been through this as far as the mental exam being requested?

Well I didnt get the flu shot this year and DID I ever pay for it. I started out with just a wheezing cough and then BAM i was sicker than a dog. Lasted 3 days and i ended up in ER with having dry heaves so bad that my esophogus was tearing and bleeding. I had to have 2 units of saline to rehydrate and 3 shots to sto the nausea. They gave me the strongest that they had...the one they give to chemo patients. MY ADVISE................GET THE SHOT. and it did also make the pots symptoms worse. On a good note.............today I had the best day I have had in months. Didnt get even lightheaded once !

keep your chin up and I am glad you are getting help. I know what you mean. If it went for my daughter and hubby i think it be best if i were gone. But no one would love her like I can,...... so living with this is worth it.

I am in St Johns Mi ...near Lansing. I read the dr list on potsplace.com and none are close. I went to Ann Arbor dr listed and he had never heard of POTS and said all my symptoms were result he believed of my sleep apnea. I need a dr close by as I filed for disability and was told by a lawyer group that since i dont see a dr ongoing for the POTS that I may not qualify. I was diagnosed in Jan 2003 and that DR put me on Florinef that didnt help and after reading all the news where alot of meds didnt help i never tried going back to Cleveland plus the fact that it is 5 hrs away and my ins doesnt cover out of state. My regular dr here never heard of pots and put me thru the ringer doing tests to out rule other possibilities HELP...I need a dr close to Lansing

My nephew is legally blind and has Cerebral Palsey. he is 14 now and has had SS disability since age 6 and will keep it the rest of his life. He had 3 reviews and they told her on the last one that they know his condition will worsen so no need for further reviews. So no age is too early to start the process

ok.... I goofed... so what do I do now that i did all the filing before I got advice or found this forum. I let SS get all the records...i only have some medical records from 1 doctor. Also I got a letter stating that I have to see one of their Drs for a MENTAL EXAM.....oh my ....makes me nervous

Hello all and its great to find a place where i can feel support. I just filed for disability Aug 31 , 05. I filled out my daily activity questionaire yesterday . I am mainly wondering how many POTS people have been approved for ss Disability and if so how many tries did it take? Also Is anyone from Michigan that has found a good Dr here? I was diagnosed at Cleveland but its 5 hrs away and my ins doesnt cover the visits

My ex husband had a chiari malformation and started having very bad pains in extremities...mainly right arm. He had tests ran to find out that the malformation had caused Syringomyelia. This is where a pocket of fluid forms behind the spinal cord due to the blockage of passway that the chiari causes. You may want to look into this.