I'm so sorry to hear about what's happening. Here's a bit of my experience with some this.
You asked: Do any of you have hot spells with your whole body getting wet but different than menopause is or was?
Absolutely, positively yes. I also wonder if my thermostat is completely wacky. I know hot flashes from menopause quite well. What I experience is not a hot flash but lots of sweating after relatively minor exertion. It happened yesterday. I went for a walk in about 85 degree heat. Back at the office in a meeting I sat there dripping for about a 1/2 hour and finally jokingly said, "Looks like you're going to have put in a shower for my ADA accommodations." It is mostly my head and neck though, not my whole body. I also don't really know if it's due to the MS, but I'd like to have a shower at work.
Whole body night sweats with menopause are known to occur. Luckily I didn't have those.
I am hypothyroid and that can also cause hot flashes and sweating. It's my understanding hypothyroidism is one of the most under diagnosed conditions in women so you may want to double check that they've ruled that out.
I don't have high or fluctuating blood pressure (yet). Mine's in the low range of normal.
You wrote: Woke up and could hardly walk, legs kept collapsing and did not want to work. Very fatigued and not sleeping well.
I have not yet had the experience of waking up and having a hard time walking or having my legs collapse. I have had the experience of my legs not wanting to work, sort of like I'm attached to a bungee cord or something. I attributed what I experienced to the MS. Since you're not diagnosed with MS yet, I'd definitely think about seeing your neurologist before October because IMO what you've described could be due to MS or it could be due to other things.
I've had days when I'm fatigued. So far I've not had any trouble sleeping. I do understand though what you mean when you said my body is not working well. It's really hard for me to know if that's the MS or just part of getting old.
Hopefully some others will chime in here and we can all learn. It's ok to vent and please feel free to pm me too.
I hope you start feeling stronger and more energetic soon.
I wish I had gotten back to you yesterday like Sharon but I too feel yucky. Good things do happen, though. I just got off the phone with a nurse at my urologist's office and SHE has MS. She has the recurring UTI problem I have and we talked for a while. It made me feel sane. Linda, I do have all-over sweats but they are seldom. I never had hot flashes with menopause but (Sharon) does menopause ever end? I don't have blood pressure or thyroid problems (just had complete physical and blood work-all OK) but do feel weak, wobbly and generally sick. These symptoms are very hard to describe to a doctor or disability insurance person. I have mentioned my problems sleeping but I don't mind that so much. When I am really sick, I sleep a lot so I'd rather not be there. I have taken Tylenol to sleep. "when I stop my brain and think about it my body is not working well and some underlying soft pain" I am so with you here. The first problem is to "stop your brain." My mind constantly runs in overdrive trying to figure out what to do next. When I have at least one doctor's appointment scheduled, I let myself off the hook a little because at least I am doing something. "My husband is a good listener but he does not need to hear all of this all the time. He worries I am worried too much but do need to talk things out and put in perspective." I am with you here, too. My husband is actually NOT a good listener but I worry about talking about it too much even though I don't talk about it at all. Your husband needs to stop worrying about you worrying too much and start worrying about how you feel. Both of our husbands need to take lessons from HarryZ, the ultimate MS husband. Feel free to pm me, too, anytime.
Jaycee--Wonderful news about the nurse. Maybe you’ll figure out a way to get some relief from the UTIs. You said/asked:
I have no idea if it ever ends. I actually think that many women sail right through menopause with few or no problems. That wasn’t the case for me. IMO it’s great news that you never had hot flashes. When I was on the hunt for an ob/gyn for hormones I actually managed to have 3 hot flashes within 15 minutes that were of sufficient intensity to fog up my glasses. I still didn’t manage to get a script or order for saliva testing from that particular physician.I never had hot flashes with menopause but (Sharon) does menopause ever end?
Back to your question if menopause ever ends, despite my age I definitely don’t think mine has. I thought early on my MS symptoms had a cycle of their own. To try and figure it out I adapted the chart in this article, Understanding MS Across the Menstrual Cycle, for my menopausal symptoms. Without a doubt my MS symptoms had a rhythm all their own, not unlike what many younger women with MS sometimes report.
I think overall menopause is experienced individually, just like MS. For me the individualized hormone testing and balancing really seems to make some sense for better managing both.
Here's hoping we all stay on the feeling better not worse track for a long time.
I've been going through it for years now and the hot flashes have gotten worse - am on bio-identical estrogen and that has helped a lot. But I'm going to switch from the bio-identical progestron to a progestron creme. Hopefully that plus the estrogen will keep it stable.
When I had my hormone levels tested I learned I didn't have any. They started me on 300 mg bioidentical capsules and they didn't budge my progesterone level, so cream was added and bingo.
I think progesterone has a lot going for it--remyelination, neuroprotection and if you're following the CCSVI info, also helpful when there's a lack of blood supply to an area.
Progesterone as a neuroprotective factor in traumatic and ischemic brain injury
All the best and I hope the cream works for you.There is growing evidence, including recently published clinical trials, that progesterone and perhaps its metabolite allopregnanolone exert neuroprotective effects on the injured central nervous system (CNS).
Laboratories around the world have shown that progesterone and allopregnanolone act through numerous metabolic and physiological pathways that can affect the injury response in many different tissues and organ systems.
Furthermore, progesterone is a natural hormone, synthesized in both males and females, that can act as a pro-drug for other metabolites with their own distinct mode of action in CNS repair.
These properties make progesterone a unique and compelling natural agent to consider for testing in clinical trial for CNS injuries including TBI and stroke
Ms probably was rearing its' ugly head about 20 years ago at least. I sought medical help and was told I had Lupus and I just needed to deal with that. WHAT? That's the premise I went with for a while. Well, being in the laboratory, a new instrument came out and I volunteered to have my blood drawn for that. It did show irregularity, but not pointing toward Lupus. Also now available, a DNA test for Lupus. I paid for that out of my pcket, as insurance wouldn't cover it, but it came back that I, indeed, did NOT have Lupus. Now in my 50's it's like I suddenly and quickly "hit a brick wall"! I was really disabled, falling, staggering, visual problems, fatigue beyond anything... After the myriad of tests for hearing and ear issues, THe ENT ordered an MRI. Oh my goodness, the old healed lesions from over years,and the bright shining new ones. Then the oligoclonal bands in my CSF...but the first neurologist could NOT get past the fact that I was over 50!!! REALLY? On to another neurologist who saw the light, and finally Rebif. Still not truly improved, and it's been over a year, but have seen a few slight breakthroughs (I hope and pray). Seeking to do CCSVI to help myself next. Disability...ugh. Can no longer work and I always thought it would be by my choice...Trying to keep my humor and find new ways to "reinvent" my self worth. Family just cannot accept this disability, despite the fact that it's right there for all to see, so I'm finally to the acceptance that their non-acceptance and lack of assistance is their problem and I'll ally myself to those who can accept me now, as I am. That's been the biggest struggle, family that I've done so much for over the years...
I decided to drop back in on the forum to see what's what, and found that I started this thread over 8 years ago!
I'm really doing pretty well MS-wise, still only taking LDN and still swear by it, although I've gathered from others' experiences that in time it probably won't help much if at all. The main MS symptoms I have are cognitive problems (cannot multi-task anymore at all) and heat intolerance, a real problem here in Texas; if I could afford it I'd move way north in a New York minute. I also have chronic labyrinthitis, but it's been at a very minor level for years. I still follow up with my inner-ear neurologist (aka "otologist" or "otoneurologist") mostly because he prescribes my LDN, bless him.
As I think I've said before, before I ever got MS, I already used a cane or walker (for spinal collapse) and that hasn't changed much. I own a wheelchair (which I had to buy so I could wait in line for an ID at the DPS), otherwise it's an ad hoc clothes rack in a corner. Of course I hope not to need it daily but at least I've got it. I use a mobility scooter when I go outside or otherwise my also-elderly dog Claude the Blue Lacy-check him out online at http://claudethebluelacy.blogspot.com/- would never get a walk.
The hardest thing for me is that I've had to move in with my son, starting back in 2009. First we shared a rent house in a marginally scary neighborhood in Austin, but since last January we've been living much more happily in a lovely place owned by friends out in the country. They needed a caretaker so my son takes care of the place, and helps me out too. It's beautiful out here, peaceful, with wildflowers and wildlife, and dependable air-conditioning, which is essential. A horrible internet connection is the reason the owner, who has an internet-based business, had to move back to Austin, but it's no worse than dial-up, which I remember well. We can't stream anything, but big deal.
I don't need a caretaker for my MS, yet, but because I need help sometimes because of my back. But bless his heart, my son is single and I'm afraid he always will be as long as I'm around. That's my only complaint but it's a rough one; I know I'm an albatross, and I deeply regret it. My relative poverty is a huge factor; I should probably buy a Lotto ticket now and then, so there will be a tiny chance that things could improve, for him at least.
So do any of you live with your children or otherwise not independently? Do you have morale problems because of that dependency? One of my best and oldest friends has been dealing with a diagnosis of early-onset Alzheimer's since age 50, and in comparison with her situation, I have zero to complain about.
I'm sorry it's been difficult, for you, to have to move back in with your son. Has it gotten any easier in the past few years?
Thankfully you don't need a caregiver for your MS. And I'm thankful I don't either. MS is so challengeing and taxing. I'm deliberate
and commited to keeping my morale up. Also, How is LDN helpful? I've heard alot of good about it but I don't know just how it helps.
I'm very curious
About LDN- it tricks the body into making more endorphins, which at the very least, feels good, but I believe it does more. The theory is that endorphins, being very basic to the immune system, help to balance things whether a person has auto-immune or immune-deficient disease, so LDN helps defeat the auto-immune process by flooding the body with endorphins. There are some basics at this site, among many others- http://ldnformultiplesclerosis.blogspot ... at-is.html.