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valiz

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Everything posted by valiz

  1. Katybug, I want to second everything that Bellgirl stated. You are in good hands and your Dr. sounds awesome too. Continue to pray for your recovery. liz
  2. Praying for you. Praying the surgery and your recovery will go smoothly and you will be a fast healer. Blessings, liz
  3. I too have these issues as well. It is very frustrating and sometimes I worry that I may be starting with dementia.
  4. So happy she has a diagnosis, it is a starting point. I know I was relieved by finally getting a diagnosis 5 years ago. I had a sleep study last night. I have to wait 2 weeks until I have my appt. to find out results. Blessings to you and your daughter.
  5. You must be the best mother ever! I love how you keep looking for answers and advocate for Tyler. I hope this will be the answer you have needed. It would be wonderful if we could quit treating symptoms and have a treatment that will cure dysautonomia. God bless you as you continue the journey. Thank-you for all your posts. I have learned so much from you and others. Keep posting. liz
  6. I live near Harrisonburg, Va. I'm sure other people will chime in that are closer to Northern Va. then I am. Best wishes to you.
  7. I'm glad you had an informative Dr. visit. I wish you the best as you explore your best options. liz
  8. Very good news for those with EDS.
  9. I was diagnosed in 2009 with POTS and NMH at Johns Hopkins. At the time I did not understand my diagnosis and opted not to be followed there. Instead I have been followed by the referring Nephrologist/Internal Medicine MD in my home town. He now feels that I have progressed to PAF but I have had no additional tests done for PAF, he is just going by my symptoms. After my last app in Dec I received a card in the mail to see a neurologist that is in the same practice. I figured my Dr. had decided that after I was seen. So the appt was this past Tue. Come to find out, I was not referred to see him by my Dr.and I had not made the appt by myself, so it was a bit awkward but he could access my records. So he did a minor exam and wanted a cervical MRI even though I just had one 3 years ago. He said because of my brisk reflexes in my knees. I said only and upright MRI will show chiari and he said a regular one will if it is severe enough. He also is sending me for a consult for a sleep study. I am fine with sleep study as that is one of my big issues. So my question is do any of the rest of you have neuropathy and have brisk reflexes? Do you feel there is any point in doing another cervical MRI so soon? The other showed degenerative disc disease at almost every level. Liz
  10. I tried it (Amitriptylin) 10 mg but it caused my standing and sitting B/P to drop too much to the point of fainting. I hope you can figure out your symptoms and what causes them.
  11. I have a mini wire haired dachshund, Ginger. She is almost 14 years old and a love and a cuddlier.
  12. My eye pressures started out at 25 & 28. He started me on xalantin gtts at bedtime. I was switched several years ago to timoptic gtts but have had to increase it to twice a day. The pressures are stable on the Timoptic...17 I think the last time they were checked. I go every 4 months. My visual fields have been getting worse though. He says the optic nerve test looks ok. I have trouble getting the drops in...they seem to go everywhere but my eyes. lol My finger to nose with eyes shut is bad too. I take Miralax 2-3 times a day for slow gastric function and like you there seems to be a correlation. You just might be on the right track. Thanks, TCP Liz
  13. I have dysautonomia and have glaucoma. It is an interesting question you ask. I wish I knew the answer. I have not had testing on co-existing conditions or causes of POTS and OI. I suspect I have small fiber neuropathy. I also suspect ME. Maybe someone else can tie everything together. Have a good day. Liz
  14. So sorry that you had to leave your graduate program but you are right to focus on getting better. Praying for your recovery.
  15. Rosie, my standing pulse pressures are narrow. They have been as low as 17 points. My lying B/P are higher and the pulse pressures are more like 40-60. Interestingly my diastolic pressures are usually a little higher standing but my systolic pressures are 20-30 points lower. I don't know what causes this or if this is indicating anything. Maybe someone else will chime in on the cause of low pulse pressures. valiz
  16. I have had POTS, NHM, CFS/ME symptoms starting around age 8-10. There were no diagnoses back in the 60-70's. I was not diagnosed until 4 yrs ago at age 58 at Johns Hopkins. My Dr. feels it has progressed to PAF. I have had no tests except the TTT at Johns Hopkins where the diagnosis was made. I have many symptoms of dysautonomia, but I I was wondering if anyone else has or had symptoms of no satiety? I can fast for quite awhile without symptoms but once I eat I don't feel satisfied or full. So it takes so much will power to control my eating and eat a proper 3 small meals a day + small snacks. I have gained 15-20 pounds in the last 4 years. I have very slow digestion/emptying, constipation (I take Miralax 2x's a day). I am new to the forum as a member but have been educating myself here for 4 years and have learned SO much from others postings and links. Thanks everyone. Any thoughts or suggestions are welcome. liz
  17. As far as student loans go, You can get a hardship deferment. Check with your lender. You will still accrue interest, I believe but at least you could hold off on payments until you are working. As far as SSDI most lawyers want your case after you have been denied because that is when they make the money. I did my SSDI interview on the phone after I had gotten the papers and filled them out and gave her the info that I had on my paper. She had some helpful suggestions. I was approved in 2 months time without a lawyer's help. I had to wait 5 months, 6 months really because they pay for the previous month. I wish you all the best as you decide what to do. Praying you have a good day.
  18. I took Clomid 38 years ago, I had no adverse effects from it. I already had Pots/NMH then but of course there was no such diagnosis then. But I'm sure I did. May the Clomid work well with no side affects!
  19. I do not know why us older persons with dysautonomia cannot be seen in clinic at Mayo. I would think the researchers and doctors could learn much from our symptomology, progression and what our quality of life has been like and what been helpful and not helpful. I started with symptoms around age 10. I would like to do clinical trials and many of them will not do trials on people our age. I do hope you get some answers at Mayo and some helpful treatments.
  20. My story is much like yours. I am 62 years old but had fainting episodes as young as 10 years old. Then in my twenties I feel like I went into remission for about 15 years. Then my symptoms of fatigue, insomnia, easily overstimulated, IBS, dizziness, tachy and ER visits that were much like a TIA but involved my whole body. I couldn't talk, bear weight, had not an ounce of strength, dizzy, nausea and vomiting and sometimes very low BS. It wasn't until 4 years ago after a hospitalization that a Nephrologist of all things, thought I might have POTS. He referred me to Johns Hopkins for the TTT. I have both POTS and NMH (same as NCS). I read Dr. Grubb's book and he states that in older persons the episodes of NMH can be very similar to a TIA. I hope you can get some answers. Having NMH is not "just an inconvenience"but is Quality of Life altering for me.
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