Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Cathy please keep us posted on your testing results. I had a lot of extremely weird neurological issues last summer concurrently with WD. Some of the troubling ones were I had at least 3 incidents of blurred vision and on the same day inability to do high level math equations all day. I also had the more frequently mentioned anxiety, dizziness, ataxia, feeling like you are walking at a 30 degree angle for about 4 months. All of this occurred b/f getting on Entocort and I was on no other drugs at the time. At the time I thought the WD was separate from all of the other symptoms which I just chalked up to periomenopause due to age. I probably went to at least 6 docs during this period and nobody tied anything together. One female doctor actually laughed at me when I said I could not do high level math equations all day. She said I was lacking estrogen. Another female doctor told me "women tough it out during this time." I finally ended up trying the lowest dose HRT. All of this occurred b/f my CC diagnosis and before I found this forum. I cried and cried at the end of October when I stumbled across the section of this forum that said not to take HRT. " on the internet. I've gone to the same physician's assistant for gynecological issues for 25 years and her comment when I said I flat out could not do math all day was "there is something else going on." i.e. in 25 years of doing her line of work she had never come across a woman who flat out could not do math equations all day. Her comment kind of reaffirms my statement that I think MC made hormonal issues worse or hormonal issues made MC worse. For a woman to go through menopause naturally you are told to eat right, do yoga, get plenty of sleep, and eat soy which is all fine if you can do math.
Cathy, please keep us posted as I know the blurred vision can be frightening. Brandy
Hi Brandy,
Thank you so much for sharing! I would NEVER flame any woman for trying to take back control of her own health and quite frankly, if this specialist suggests that I take HRT, I will try it! She did say that we would do a lot of monitoring of my blood levels and that it might take some time to get the right dose.
How incredibly infuriating that a doctor laughed @ you! I really felt a connection with this doctor and felt she listened to all of my concerns so hopefully it continues to go well. She was most concerned about the vision issues and my extreme thirst. I have also had some other neurological issues that come and go..i.e. stumbling.
I should know today the results of some of my blood work and whether my adrenals are working properly and will definitely check back in.
Tex-Did you mention at some point that it could/would take a long time of dealing with this issue (WD and MC)for the adrenals to shut down? I have not been dealing with this for long @ all (maybe a year at the most).
I don't recall the post that you referred to, but I'm guessing that if I mentioned decreased adrenal function, I was probably talking about the effects of long-term corticosteroid use. In that context, a year is long enough to significantly increase the risk of permanently compromised adrenal function, especially for any corticosteroid other than budesonide, and especially if the corticosteroid is not properly discontinued (by a very long regimen of tapering the dosage).
Incidentally, you mentioned transient neurological issues (including stumbling). Please be aware that neurological issues such as that (for someone who has MC) is almost guaranteed to be due to gluten ataxia. I had/have numerous neurological issues that I have no doubt are due to gluten damage, including ataxia, peripheral neuropathy, balance problems, gait irregularities, etc. I've been taking a prescription vitamin mix known as Metanx for almost 3 years now, and my neurological symptoms are noticeably improved. My balance is much better, I seldom stumble, my reflexes are back to near normal in my knees and ankles, and I have regained the ability to sense touch/pain in my lower legs and feet.
Metanx is targeted at diabetics who have peripheral neuropathy, and it's a mix of B-12, B-9 and B-6. Please be aware that it's virtually impossible to find a neurologist who realizes that gluten can cause such issues, however. I was once diagnosed with Parkinson's disease, because a neurologist discovered all my symptoms, and I couldn't convince him that it was due to gluten damage. LOL.
I don't have diabetes, by the way. FWIW, IMO, since diabetes is closely correlated with gluten-sensitivity, diabetics who develop peripheral neuropathy issues probably do so in response to neurological gluten damage (not due to the diabetes, per se).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for the support. I know I need to reattempt getting off of HRT again and if not successful reattempt getting off every 6 months. One thing I've learned from this forum is to try to be on as few drugs as possible.
Cathy,
I also had the stumbling issues along with all of the neurological issues. As my gut healed the neurological issues cleared up. At some point along the way I also started taking the B vitamins w/ folic acid. I'd say I'm back to 95% of where I was at in terms of neurological issues pre MC. I've started up again with yoga to help further with balance. (It seems weird to be 50 years old and talking about balance). I think time, good nutrition and yoga will get me back to where I was pre MC.
Mandy,
It is kind of a long story but I'll keep it brief. First I tried oral HRT as the oral version is smallest. Why anything is prescribed orally to anyone with WD is beyond me. My brain cleared up within 3 hours but I had dramatic gurgling. I crushed the pills down to smithereens and mixed them in applesauce the next two days. My brain had dramatic improvement but my gut could not tolerate the oral version. Then I tried the patch. That worked well but I got a got a grinding headache after about 4 weeks. Then I stopped the patch and went to black cohosh. My physicians assistant said black cohosh would help with sleep issues but not help the brain. She was right. I took black cohosh for about 5 weeks and slept well but anxiety kept increasing and I finally had a day I could not do math again. I still had WD at this point. Then I went back to the patch and used it off label. I cut the patch in half and put in on Monday mornings and would rip it off at Thursday at noon. It got me brain power to do my job but after several weeks of this I started getting the headaches again. Then I did same with patch cut in thirds. Then I had colonoscopy coming up and I stopped all drugs. Had colonoscopy. Was on no drugs for about 4 weeks. Anxiety kept increasing and finally culminated in a day I could not do math. Had appointment with an internal medicine doc who did bio-identicals. Told this Doc about CC (I was then diagnosed). This sounds weird but I did not have a good comfort level with this Doc. I had found this forum by then. She told me to take aloe vera also she wanted me to buy some kind of powder from her with a ton of ingredients. I knew from my few Tex posts that I had read that we should avoid anything with more than 3 ingredients and also read all over the web that probably aloe vera is not the best for WD. I left this appointment kind of crying because I had high hopes but the woman was weird. By this time I was at permanent softserve and reattempted oral hrt and was able to tolerate it.
I have names of 3 other practitioners in my area who do bioidenticals but I had to step away from this process for awhile as I went thru a rough 3 month period and kept cycling back between GI doc, PCP and physicians assistant and I remember sitting in everyone's offices with extreme dizziness (pretty much constant) and no one knew what to do with me. The boyfriend told me to stop seeing doctors and he was right. I'm glad things are working out well for you! Brandy
I'm glad you're doing better Brandy.
I received results from my blood work yesterday afternoon and they confirmed what my previous results had shown...my Leutenizing hormone levels are low. In addition there is a, "lack of signal from the pituitary and hypothalamus", which is not a result of menopause. I'm awaiting the referral for an MRI with and without contrast and I'm absolutely petrified. Given the relative quickness of my MC diagnosis, I'm questioning that and wonder if a tumor could be the cause for all of my symptoms??!! I was in somewhat of shock when the nurse called me and she could not answer all of my questions. She thought that the endocrinologist would be able to make an appointment next week @ the hospital. The only real positive is that I was justified in pushing for more tests as I just have felt like something continues to not be right and this was confirmation of that!
Wow, keep us posted on how things go. It sounds like it was good that you kept "pressing." I may be "out of pocket" for awhile next week as I'm heading on a business trip to the rust belt but I'll log in as soon as I get back. Will keep you in my prayers, Brandy
I fell last night. I mean, I do a lot of falling, but this was a doozy. I really hurt myself.
I have always been "clumsy". I had polio as a small child and had to be in serial casts at the age of 11 for 6 months. My sports skills were not very good. And I was always stumbling, something that has got worse over the years.
I was taking HRT until a few months ago, when Polly suggested I stop them. I have, but the falling hasn't stopped. I'm everything free, but I still fall all the time.
BTW Brandy. I can't do high level maths equations either. I doubt if any meds could help since I could never do them. I am in AWE that you think that's a symptom of a foggy brain!
I'm sorry that happened, and I hope you recover quickly. Are you taking a vitamin B-12 supplement, or have you had your blood level checked, to make sure that it's adequate? My balance has improved a lot from taking Metanx (a prescription B-12, B-9 and B-6 combination), and I don't fall as often as I did in the past.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Had my MRI Thursday evening and I should know the results from my brain scan on Wed. of this week. I was pretty anxious leading up to it but the folks @ the hospital were great, explained everything beforehand and while it was not pleasant, I made it through. The worst part was having this "cage" put over my head to keep my head still and the fact that they did a scan with and without a contrast, so that they pulled me out, injected the dye in an IV and then had to put me back in the machine for another round of pictures. Will keep everyone updated. This, in addition to a stressful week @ work had my stomach churning and a burning feeling back in my gut. I am continuing to keep normans though with 1 Entorcort every 3-4 days.
Cathy wrote:The worst part was having this "cage" put over my head to keep my head still and the fact that they did a scan with and without a contrast, so that they pulled me out, injected the dye in an IV and then had to put me back in the machine for another round of pictures.
Yes, I had a series of head MRIs a couple of years ago because the first MRI showed a tumor on my brain stem. A CAT scan revealed that it was calcified, so no worries. But I hated having the MRIs, especially with the "cage" placed on my head. I closed my eyes before they put it on me and told myself it wasn't there. I'm somewhat claustrophobic and had to keep my eyes closed during each MRI. I should probably have a followup, but I don't want to go through it again.
Cathy wrote:I am continuing to keep normans though with 1 Entorcort every 3-4 days.
Great news!
Gloria
You never know what you can do until you have to do it.
I've been through that process a couple of times, also. The first one was with an old machine, and that puppy was unbelievably loud. The second one was a relatively new machine and it wasn't nearly as bad. It seemed to work noticeably faster, also.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Brandy, I'm not saying one way or the other whether to take HRT (which I consider a personal choice with no right or wrong answer), but I wanted to be sure you knew about the KEEPS trial, which hypothesizes that HRT results may be different if taken by younger women--around the time of menopause. That trial may shed a lot of new light on the benefits and risks of HRT. Who knows what they will say, but it's worth checking out. My doctor told me about it. I just know what I've read on their website:
tnelson wrote:Brandy, I'm not saying one way or the other whether to take HRT (which I consider a personal choice with no right or wrong answer), but I wanted to be sure you knew about the KEEPS trial, which hypothesizes that HRT results may be different if taken by younger women--around the time of menopause. That trial may shed a lot of new light on the benefits and risks of HRT. Who knows what they will say, but it's worth checking out. My doctor told me about it. I just know what I've read on their website:
Hi All,
Received the results from my MRI and I don't have a tumor on my pituitary gland...YIPEE!! Very good news. I have a follow up appt. with the endocrinologist on Wed. to see what my options are for treatment of my lack of hormones. I am hoping she doesn't suggest waiting things out as it is now 9 months of no cycle. My mood swings are getting worse also so I am going to insist that we try something. I will keep you all updated.
