This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone. I'm back with some questions. Do any of you have hot spells with your whole body getting wet but different than menopause is or was? Mine are different and wonder if my internal thermostate is off. Does this happen in MS? Also think my so called arthritis problems are not all arthritis. Had my feet checked out by my physio and she sees no arthritis in them but they are doing strange things. She has given me some exercises to do and suggested spacers for some of my toes to try and straighten out. Affects my balance so maybe this will help. My blood pressure has been up and down since all of this but told not high blood pressure when checked out. Anyone else have? I monitor at home and mostley OK unless I think about it too much before taking. Think I have been checked for thyroid problems but not sure what all the blood tests have been. Told other things have been checked out but need to check what. I'm OK with what I have until something happens, like yesterday. Woke up and could hardly walk, legs kept collapsing and did not want to work. Very fatigued and not sleeping well. Have resorted to taking Iboprofen to help sleep. Not always sure why I am having problems sleeping but when I stop my brain and think about it my body is not working well and some underlying soft pain. Not real sharp or noticable but there. Do any of you understand this? Had not been doing a lot the day before or yesterday but today feel like doing nothing, body is not good. Need to do some things today but also needed to vent some of this. 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. Thanks for listening, Linda

Hi Linda

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.

Sharon

Hi guys

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

Thank you Jaycee and Sharon. Helps to hear from others going through similar things. Have improved since my bad day and was able to do more then I thought when we had 24 people over on Sunday. One of our sons is leaving Wed. for 4 or 5 years to do his Masters and Phd. in Montreal and had family and a few of his friends over. Now all 3 sons will be away. We'll miss not having at least one close to home. Think I may have had new symptoms come on when the new body thing happened. Will have to write down and talk to the Neurologist. Hopefully it will give him some answers as to what I have. Took about 3 or 4 days to come back to how I was before. After the party I'm not too bad today. Body a bit off and slower but that has been the norm after doing a lot. Trying to not do much but did have to weed in our garden and selling peaches today we bring in and some vegies. Yoga tomorrow, that should help. Thanks again, Linda

Linda--great news that you're feeling better. I think it does help to try and keep a log about what's happening for yourself and the neuro.

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.

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.

Sharon

I think it varies, I've read of some women who never experience hot flashes and other menopause symptoms - and then I read of a woman in her 80s who still has hot flashes.

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.

selkie

Hi Selkie and welcome to the oldies but goodies group. I just saw your post and wanted to say I think going for the progestrerone cream is a good idea.

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.

Sharon

Hi,
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...

Hi Flora68,
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

flora68,
thank you for the link to "LDN". I read some of it, it's very interesting, I'll finish reading it tomorrow after a good nights rest.
Do you have any celebration plans for your birthday?

flora68.
Happy Birthday!