tag:blogger.com,1999:blog-2152211800119076289.post3695170804218765651..comments2023-11-09T02:44:56.895-08:00Comments on Living with Periodic Paralysis: The Blog: Dysautonomia and Periodic ParalysisSusan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-2152211800119076289.post-35014624395504690792018-10-15T07:06:42.335-07:002018-10-15T07:06:42.335-07:00Kat,
Do you have issues with potassium? Are you ...Kat, <br /><br />Do you have issues with potassium? Are you taking drugs/medications?<br /><br />You may contact me at periodicparalysisnetwork@gmail.com<br />Susan Q.Knittle-Hunterhttps://www.blogger.com/profile/14423032446507636527noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-69370626591189266692018-10-14T19:10:55.046-07:002018-10-14T19:10:55.046-07:00Hello, I’m looking for answers. I was diagnosed wi...Hello, I’m looking for answers. I was diagnosed with Dysautonomia/Vagus Nervous Disorder last week. I also have late Lyme, Long Qt Syndrome II, Sick Sinus Syndrome, Fibromyalgia, Avascular Necrosis in large bones not the joints, Sicca Syndrome, Diabetic 2, Transverse Myelitis white completele paralysis for 3 months at 13, at 14 Trigenimal Neuralgia, and have CFS/ME; now possible Sjogrens/MS/Lupus. My throat has been red and raw for 7 months! <br />I honestly am at a loss, I fear paralysis is in the making then I ran into this post<br />It’s the weaknesses in my atrophied muscles in arms and legs. My lower back and my neck are so weak that I’m laying down much. Up to 80% of the day. I can no longer walk down the hall without holding onto something. Any stores I’m now using the motorized chair. Some mornings I think I will not be able to stand but I do. Pain, burning, vibrations, weaknesses in legs mostly but arms too<br /><br />Question Anonymoushttps://www.blogger.com/profile/08065000376022397115noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-9252127415106515522018-01-13T12:36:25.942-08:002018-01-13T12:36:25.942-08:00You are now in our support group...we can discuss ...You are now in our support group...we can discuss these issues there...we have a group for members who have more than just PP..You may want to join that group..Susan Q.Knittle-Hunterhttps://www.blogger.com/profile/14423032446507636527noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-46185923743036822232018-01-13T12:26:56.060-08:002018-01-13T12:26:56.060-08:00Joanna- since my last post above I was diagnosed w...Joanna- since my last post above I was diagnosed with late stage Lyme Disease, Babesiosis, Bartonella and Epstein Barr - in addition to POTS, autonomic neuropathy and Celiac Disease that I was previously diagnosed with. It appears that my PP is a symptom of the tic-born diseases. I would encourage you to pursue the PP genetic testing. But regardless of that outcome , I would recommend finding a Lyme specialist also. Very difficult to find a good one - but if you were diagnosed with late stage Lyme - it is likely this could explain all of your symptoms. All of the diagnoses you list above are common misdiagnosis given to Lyme Disease patients. Although the various tick born diseases are difficult to diagnose and treat - plenty of patients have had miraculous success. I am 6 months into treatment and beginning to see some improvement. Paralysis attacks are a bit less severe. Good luck!Lauren Fordhttps://www.blogger.com/profile/17213405193495996277noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-88355555940234791642018-01-13T10:39:32.959-08:002018-01-13T10:39:32.959-08:00Hello, I am knew to this dx and have just joined t...Hello, I am knew to this dx and have just joined the FB group. I started getting episodes in 2001 after bout of pneumonia, they thought it was Guillain Barre, then passed. In 2006 I was dx with hyperthyroidism, Graves, thyroid cancer and thyrotoxicosis periodic paralysis...episodes stopped. they returned in 2015 but this was after a few years with tons of symptoms and dx from fibre to bursitis, chronic sinusitis, plantar fasciitis, CFS, possible Sjogrens, autonomic nervous system dysfunction and late stage Lyme disease. It has been a long arduous journey like yourself. I am now awaiting a geneticist appt. Jan 19 for testing for HPP. My neuro has me on Diamox but I now experiencing worsening bladder retention which I was dx with in 2015. Told I shouldn't take potassium cause of the autonomic issues. I'm wondering how the Lyme disease works into this. Had a tilt table test which I was told I had severe pre syncope as my BP dropped to 50/29. Many thanks for your helpJoanna Galeanoreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-26163639670500296072017-07-12T10:21:42.027-07:002017-07-12T10:21:42.027-07:00Hello Jenny,
I apologize for not seeing this until...Hello Jenny,<br />I apologize for not seeing this until now. <br /><br />I will use the same information for the other person who commented on this.<br />Many individuals with PP also have POTS. This may be due to the fact that many with PP also have EDS (Ehlers-Danlos)(POTS often occurs with EDS). Both are found on Chromosome 17 and are often called-'Sister' conditions.<br /><br />Those diagnoses may also actually be the symptoms of PP that have been misdiagnosed....it happens often. It takes an average of 20 years for a diagnosis of PP. This is due to all of the misdiagnoses and the drugs given to treat conditions that we do not have. The drugs/meds affect our PP as drugs/meds are our worst and most severe triggers.<br /><br />Increasing salt can create problems for PP....it is a trigger for our symotoms. Balance is the key for POTS and PP....<br /><br />Your doctor may have it backwards....POTS is not causing paralysis but PP may be causing POTS/POTS Symptoms...<br /><br />Another important issue in that we can have more than one medical condition. This is called 'co-existing ' medical conditions.<br /><br />I would like to invite you to join our PPN Support Group. We have much information to share and a great group of over 675 members going through much the same as you are. <br /><br />www.facebook.com/groups/periodicparalysisnetworksupportgroupSusan Q.Knittle-Hunterhttps://www.blogger.com/profile/14423032446507636527noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-75422570125625715092017-07-12T10:10:42.560-07:002017-07-12T10:10:42.560-07:00Lauren, Many individuals with PP also have POTS. T...Lauren, Many individuals with PP also have POTS. This may be due to the fact that many with PP also have EDS (Ehlers-Danlos)(POTS often occurs with EDS). Both are found on Chromosome 17 and are often called-'Sister' conditions.<br /><br />Those diagnoses may also actually be the symptoms of PP that have been misdiagnosed....it happens often. It takes an average of 20 years for a diagnosis of PP. This is due to all of the misdiagnoses and the drugs given to treat conditions that we do not have. The drugs/meds affect our PP as drugs/meds are our worst and most severe triggers.<br /><br />I have PP and I have the same symptoms you described. I cannot sleep or lie flat on my back at night, in the dentist office, or for any testing (xrays, MRI's, etc), etc without symptoms and/or going onto paralysis. I also cannot eat gluten which is a huge trigger for my symptoms.<br /><br />I would like to invite you to join our PPN Support Group. We have much information to share and a great group of over 675 members going through much the same as you are. <br /><br />www.facebook.com/groups/periodicparalysisnetworksupportgroup<br />Susan Q.Knittle-Hunterhttps://www.blogger.com/profile/14423032446507636527noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-43237376609713735082017-07-11T11:14:58.844-07:002017-07-11T11:14:58.844-07:00Thank you so much for sharing this. I have Celiac ...Thank you so much for sharing this. I have Celiac Disease, and Dysautonomia/POTS. I also have some form of periodic paralysis that my doctors are struggling to identify. My paralysis has many triggers exercise, caffeine, alcohol, stress, etc. But the most unique among them is the Active Stand and Tilt Table Test. When I take these tests where I am forced to go from lying down to an upright position quickly - it triggers lightheadedness/syncope (as I have POTS) but also triggers full paralysis within minutes. Have you heard about a causal relationship between POTS and some forms of periodic paralysis? Any help would be greatly appreciated - thanks!! Lauren Fordhttps://www.blogger.com/profile/17213405193495996277noreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-44146699327045792862017-04-19T23:53:11.617-07:002017-04-19T23:53:11.617-07:00I have ME and Postural Tachycardia Syndrome, (POTS...I have ME and Postural Tachycardia Syndrome, (POTS) a form of dysautonomia orthostatic intolerance.<br /><br />When I asked around after an episode of paralysis a number of people with POTS had very similar experiences. My doctors are adamant POTS can't cause paralysis. I accept that, but wonder if there's a link? POTS is quite a lot to do with balancing electrolytes. The first advice is often to increase salt. Jenny Hornerhttps://www.blogger.com/profile/01060501045460803147noreply@blogger.com