alijames

HI In reply- ataxia means loss of balance -as in can't stand with feet together at all, clumsy movements, stagger, imbalance and falling, vertigo and dizziness, forgetfulness, trouble sequencing, loss of depth perception, muscle atrophy, choking, neurogenic bladder, apnea, fine motor problems, spasticity, and FATIGUE. This is a constant. Though there are sometimes a few hours when there is little sunlight when it seems my eyes relax a little and I can see more easily. The diazepam was for the spasticity even in my eyes? I got so dizzy when a PT gently moved my head from side to side that they couldn't record any bp at all for several minutes. Finally got it at 70 over 40. It was 120 over 70 when I went in. That's just one event, one day! How do you know if it's MSA? My ataxia is progressive! alice

HI I have both dystautonomia and cerebellar ataxia. Unfortunately, they can set each other off and sometimes I go into a sort of blur zone--either with low bp and poor vision or complete spatial disorientation and nausea and who knows what. Sometimes my eyes seem to get rigid and locked. A small dose of valium seems to help but I have a hard time getting this from my doc! Like I'm a drug addict 20 years into this mess. I guess I'm doing extra badly now b/c the cerebellar ataxia is getting more progressive and that causes the dysautonomia to go crazy. I feel soooo miserable! Many days I can barely get up for more than a few minutes and then I crash again. Does anyone have this combo? Is this really MSA???? Thanks alice

HI What is EDS-- Ehlers Danos? I have had small fiber neuropathy for nearly 20 yrs, also have cerebellar ataxia and dysautnomia. The neuropathy is common with dysautonomia. I've put up with the burning nastiness for ages. Gets worse at night, usually. I'm having very weird visual changes. The person who helped me most with that is a neuro-opthamologist. It's both a sensory processing problem from sensory nerve glitches plus trouble with visual focus shifts. Mine is now a terrible problem but took many years to get this bad. I hate to say that with small fiber neuropathy, it's mostly a wait and see thing. HA! No one ever gave me anything for pain! You're lucky to have a cream to try- alijames

Dear Giraffe from a not brainy one. I was evaluated for stiff-persons because of rigidity, sensorimotor neuorpathy and spine deformities. I didn't have a GAD antibody, though. Nearly everyone who has stiff persons does. They are also usually diabetic and have thyroid issues and a hypreactive startle reflex. For an interpretation of a GAD antibody, Hopkins is a good place to check and maybe google. Good luck alice ps i think at some point all autoimmune markers start to blur together. we may be churning out random stuff?

HI According to my neuro-opthamologist, years of hypoperfusion have damaged the vision center of my brain, causing it not to receive info smoothly. I have developed a damaged sense of midline and ocular-vestibular dysreflexia. Have to use prims glasses and can only see for short periods. Memory is spotty. Emotional memory works, cues help. Come on! How many times can you black out! Even 3 blows to the head causes some damage. When the drs say it doesn't, it means they haven't found the site of damage or the mechanism of it. If you ask a rehab specialist, they may see your problems entirely differently. alice

HI I was recently diagnosed with familial dysautonomia by Dr Roy Freeman at Beth Israel. I was first seen by him for POTS/tachycardia in 2000 but when back again in 2013. It took me one year to get the appointment! The thing is-- I am not an Ashkenazi Jew from E. Europe. On the interent, the articles make it sound like this for of dysautonomia is only for that genetic group. On the other hand, it also says it is the most common genetic form in the US. He just put this in a letter to my cardiologist in Maine. That's how I found out. I also have cerebellar ataxia. And wonder if it's the overlap of these two nasty conditions that is why my dx is so hard. I've been sick now for 20 YEARS! Thanks! alice

HI I have low O2 often==have a pulse oximeter. It seems that my shortness of breath is sometimes muscle spasticity in my upper chest? or it is my apnea acting up in the daytime. I have a CPAP for low O2 at night. Sometimes I also have arrythmia and that makes my O2 drop really fast! I practice diaphragm breathing every day because my upper chest wall is...has a mind of its own. I can't explain it. They said it wasn't due to mitral valve.... Apnea seems to be my pulomonologists answer. alijames

HI I have been ill with this--including cerebellar ataxia/visual problems for 19 years. First I had to leave my job, then I got cancer and my husband, who'd been cheating because I was "no fun any more," when I got an advanced case of breast cancer, he was out the door. Then I was on my own without insurance, house, having trouble walking, breathing, gave up part-time work, by this time it is 9 years into it. Two sons start to head out further afield for work. Dad is elderly. Down to 5 to 10 loyal friends. Then I got weaker, have to use a wheelchair, got a catheter, friends "moved on." What about me? Can I move on? Do they think I am stuck because I move slowly??? I have to rest a lot. Many attempts at friend-building have been hampered by my lack of stamina!! I just don't have the money or the stamina to go to the movies, go shopping, travel...staying home is not very entertaining I guess. When people do come, I feel I have to be very entertaining or they will get bored....Down to maybe 4 friends and two sons not very nearby. Lots of alone time!!! alijames--Maine-- is any body else nearby??

Thanks, Katy I'm supposed to go to an ENT Tuesday. But how can he help with my abrupt and frequent loss of consciousness episodes? I don't just faint. I also black out- from 3 minutes to an hour. I never know when. I am going to try to see a dysautonomia specialist at Lahey Clinic tomorrow in Mass. the past 2 years have been sooo bad. Do you think there is any way to get stronger and able to go out more?? alice

HI I live in Maine and have been struggling to get consistent help for many years. Further confusing my dysautonomia was an invasive case of breast cancer and a previous dx of fibromyalgia and CFS. Then came the peripheral neuropathy, The past 3 years I have been plagued with weakness, bladder infections from neurogenic bladder,catheter, low body temp, photophobia, ataxia, muscle spasms, heat intolerance, fainting. I had low blood pressure for years but now suddenly it's just in the high zone. When I change position, I become totally disoriented-- my muscles may spasm to try to right myself, my vision blacks out. I often can't "find" my arms and legs. Now I have a lot of trouble holding my head up and maintaining any kind of posture! The vision thing is keeping me indoors-- it's winter, icy, bright snow, cold-- not wheelchair weather. I have gastro problems and severe constipation and no tears. I just "flunked" for the first time- a tilt table test- b/c I didn't faint at all during it!! I couldn't believe it. I have threea areas of low blood perfusion in the brain--but no one seems to care or wonder about it. There is something really wrong with my ears.... I don't know what. If I didn't have a neuro-opthamologist, no one would have EVER accepted that I wasn't making the past 20 years up.... I wonder what the source of all this could be...does periph neuropathy get into the cranial nerves? Is there any way to help cranial nerve problems? What on earth is the endless and crushing FATIGUE? I used to be so full of energy.... Now barely see anyone, have trouble going out, can't go in stores...trouble reading....can't paint or draw for long. I have prism glasses.... any advice? Thanks alijames