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New PNer - Scared
All right - I posted this at the intro thread but I'm going to do it here, too since this is the place it really needs to be. The incredibly amazing mrsD has already been so HELPFUL and I've spent all day doing research here on supplements, making notes and planning my budget for all these pills.
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So now you have more of what's been told to me initially. I hope to learn a lot more from you, not only about health but how to deal with this emotionally, physically and mentally. I've been able to get back on my feet from all those other things listed above but this one doesn't look like it's going to be something I'll be able to get back on my feet and reasonably functional again. So while I'm determined to try to keep myself positive as much as possible, I'm really scared. My fingers have become stiffer for the first time ever today, and my hands are tingling. Thank you in advance for your help and encouragement. :grouphug: |
OK - Onna, yes, being scared is 'normal' at this point?
How you address the fears is a whole different kettle of fish...so to speak.
I went on and got second and third opinions from regional docs while I could still 'get there'? And also before IT'd done too much damage, as my initial neuro disregarded all my concerns almost from the 'get go'. I've had this all since '2003' and I truly wish it'd go away! {I've CIDP, btw. Tho the neuro writes down new 'takes' on the diagnosis -all requiring the same treatments, but - still keeps me on-guard?} That 'pop' in the back is truly something that should be COMPLETELY explored? Honestly? It could be one, or the other, or both! Nothing is exclusive with the human body!.... Spinal MRI's w/and w/o contrast should be done, as well as both complete blood panels and metabolic panels. AND BE SURE TO ASK FOR COPIES! I go directly to the lab to get the blood work done and there I ask for copies so's the lab doesn't have to send them to my dozen plus docs...I get and make copies of the test results and pay attention to the '*' asterisks and the near asterisks - the hi's and lows... Beware of Vitamin B-6? Please. That's a supplement that's often tossed into other ones and it can add up...{I'd thot I was supplementing myself well, until I really looked closely at the labels-found I was getting 6 times the normal requirement for B-6 ....which can cause neuropathies itself? Switched to a pre-natal multi-vite which has lots of what I want and need, and added on to that as needed. Mrs D is one special and valuable resource to ask questions of? But remember, that she can't prescribe you any particular course of things to take? She reccommends and with solid back up! The choices of what you take, how and when are yours tho.. I too have 'no thyroid' and it was one mess getting to know about that! Do read CAREFULLY The prescribing directions about taking synthroid and calcium supplements...,it can get complicated? IF you're chugging all your AM pills in the AM? Including the Synthroid and Calcium? You gotta read about this? It's a no-no and makes taking lots of other stuff more complex. I too have osteo [BIG time] And I've found that even knowledge too late can help? But the knowing SOONER is far far better! :hug::hug:'s and hope - j PS HANG IN THERE! You are NOT the only ONE! Keep faith in yourself and fight for ALL the right diagnoses! I say this as I've gotten more diagnoses than I can spit on since my 'onset'. I truly didn't do anything to 'get' them? Just the luck of the draw and an immune system that went 'TILT' I believe you get my drift... Keep FAITH! Ask questions, no matter how silly, sometimes, those are the key's to it all! |
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I had an MRI w/contrast done back in Sept by the ortho surgeon who sent me to therapy/traction for two months. It really helped and I continued to do my stretches until just recently when we had serious housing issues. However, I finished my series of stretches an hour ago and my right leg has gone more numb. AND the numbness has moved up into my crotch/bladder area and I am even more scared now. I don't know if I should go to the ER, but the only thing they'd probably do is another MRI with the new problem and tell me to see my neurologist asap. I really can't afford the price of ER. I haven't gotten another one for the neurologist (I am praying this is all related to my back so I'll get better) but I was able to get through to her assistant's phone tonight and left a message on how it has gotten worse so quickly this weekend. I'll call again tomorrow to follow-up. I know they're tired of hearing from me (I've called them every day), especially since the tests haven't made it back yet but since I'm getting worse so quickly maybe they can find a way to expedite everything and also get me an appointment ASAP instead of waiting two weeks. I am not really in that much pain, so I am avoiding starting the Cymbalta she prescribed. I took a muscle relaxer and will take a low dose Xanax before bed. Too much B6 can cause neuropathies? Can't win for losing. I know I will start the B12 as soon as it arrives. Looks like I need to check out Vit D and magnesium, too. Yes, I'll check my D levels with one of my doctors before starting to megadose it. But the little bit of D I'm getting now from my flimsy multivitamin is better than what I was getting before, which was nothing. Remember - I haven't been able to stomach eating. Today was the first day I felt like eating something before 11am and I actually craved and ate something substantial at 3pm and had a snack for dinner. I thought that was a signal I was getting better, especially since I was feeling better, then I pulled myself out with my stretches. Is there a smilie for cursing? My head is spinning from all this supplement stuff. I keep reading more and more and now I'm overwhelmed as to what to take, amounts and when. I know everyone is different and has different body needs but I need to know if just starting with B12 will be beneficial then add more as I can. I didn't know about calcium and synthroid until I read something about it here TODAY! Need to wait three hours before or after the synthroid to take calcium, right? I'll just adjust it to switch one to the evening. I'll start asking for copies of the blood work more often. I do it sometimes. The spine popping has slowly travelled up my spine as more and more parts become numb. It started in my lower back and each time the bone popping has moved up. I'd write more but my hands are becoming more and more affected. :Thank you:THANK YOU so much for your response and info! :hug::Thank you: I'll try to hold on. I HAVE to - I go to work tomorrow morning and I must continue to work so I can afford all this! |
Hi Onna, I am new to this community as well, everyone has been very helpfull to me, so I think this is the right place to be. I have learnt so much already. I had not even heard of the word peripheral neuropathy 6 weeks ago and am now look up everthing I can to try to beat this thing. Hope everything goes alright for you.
Lesley |
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Yes, everyone is very helpful. I hope things work out for YOU, too! Thanks for friending. I need some friends here and I GREATLY appreciate your support. |
b onna, I'm suspicious--
--that this most recent situation that's ongoing, stemming from that back "pop", is not a peripheral neuropathy, but a spinal cord problem, possibly also affecting the proximal spinal nerve roots (which would give it a bit of a peripheral dimension--each nerve root ennervates a specific area of the body, and often one can tell which roots may be involved by examining the locatin of symptoms--but spinal cord impact can affect any body area at the level of lesion or below, and the symptoms can be exactly the same as those of a more peripheral problem, which is why it's often difficult to tease out exactly what's wrong and where).
With all the conditions you've listed, and all the meds you're on, I wonder to what extent you may have some symptoms that are med-caused. It seems as if you've been prescribed things not only for conditions, but also for side effects for other meds. You're likely one very big chemistry experiment; and it's difficult to know what's causing what with all those possible interactive combinations. I'm not a doctor, but I'm suspicious of a lot of those diagnostic labels that you've been given. It's not that people can't have multiple conditions--they certainly can--but I sense there hasn't been a lot of coordination of testing and investigation among your various doctors. I wonder if you'd be better off fidning a good doc, no matter the specialty (orthopedic, neurologic, endocrinologic, rheumatoloigc . . .) who is interested in investigation (I know, easier said than done) and sort of start a "from scratch" examination to try to get to the bottom of this. Personally, given your ankylosing spondylitis, and other symptoms you've described, I suspect really good MRI's would reveal more global spine problems with nerve root and/or cord compression, and much of it might stem from more global autoimmune issues. Can't say for certain, but I'm getting the impression that the autoimmune tests you've been given may have only scratched the surface (have they tested you for anit-neuronal antibodies? Celiac/gluten sensitivity? Anti-purkinje antibodies?). I'd like to recommend the Liza Jane spreadhseets: www.lizajane.org --which were put together to be as comprehensive a guide to test for neurolgoical symptoms as we could research and think of; also very useful to track test results over time and suggest tests that many doctors may not think of. |
maybe
You have to check for Gulian Baree. The progression is so rapid that I would think about GBS.
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I am afraid I have to agree with glenntaj in that all the meds you are taking could be causing some of your physical problems.
Have you had medical confirmation of ankyloid spondylosis? I am assuming you are female and it is very rare in females. Have you also been diagnosed with Sjogrens syndrome - it does not usually 'come and go'. Are you taking Embril, methotrexate and Plaquenil all at the same time? Methotrexate alone nearly did my liver in. It took years to heal. Do you take folic acid right along with it? Taking all three DMARDS at a time is triple-dosing. Occasionally, Rheumys will rx a small dosage of MT with Embril but only in the more serious cases. Please correct me (anyone) if I am wrong about this but these are very serious drugs. I wish I could scratch the DMARD off my list... Do you have a set of doctors that you use on a regular basis. In any case, are they aware of your med list. I am finding over the years that "less is best". I have a lot of medical problems, but i try to keep the drug list to as much of a minimum as possible. You mention 'cigarette smoke poisoning and bug spray poisoning'. Are you kidding? I would be way more concerned with the intake of meds and the long list of 'diagnosis' if this was my hx. I don't mean to sound rude but I only speak out of concern when I say that your priorities should lie in the current state of your existing problems. And, you can tell me to mind my own beeswax...:hug: Mere |
I've got to agree with Glenntaj and Mere...
I suggest you take a look at ALL the meds you're taking and web up the 'Med One -Full prescribing information' all down the lists! There is a slew of deliberately confusing info about each med BUT common and less common side effects MUST be listed! READ THEM, MEMORIZE THEM, Make a chart on them! You might just be surprised that Med A is working against Med B if not taken properly or simply being taken together in the same human! Why do you think there are soo many meds? Because some don't work for all.
At one time, I was on at least 10 prescribed meds and a slew of supplements ... they did NOT work in concert-not at all. Keep in mind that meds are created to help us? And they can and do at times, but at other times they come with a cost. Docs don't know the minute details of these things...and they shouldn't but for the most basic of cautions and interactions... often tho? Some don't pay attention or know enuf about your thyroid med affecting your allergy med etc..and on and on. As for anything neuro for diagnosis? In addition to Liza Jane's lists in the stickies, READ THEM PLEASE! There are two others you should take a peek at before your brain freezes over? http://www.aafp.org/afp/980215ap/poncelet.html AND..THIS IS ON JUST NEUROPATHY DIAGNOSTICS? And this: http://neuromuscular.wustl.edu/alfindex.htm Take a peek under N for neuropathy or PN for Peripheral Neuropathy.... Explore the whole universe of what is only a portion of what is Neurologic! We don't easily fit into neat square boxes. Nor should we, as each of us IS different. But this all is squirrelley stuff! Only thing I've got to ask, is...did you have a bad cold or flu a while before coming down with this stuff? And, were you on antibiotics? If you can't remember? Call your insurance co or your pharmacy about getting copies of your prescription records - that could help you and future docs in getting a diagnosis. You seem to have a lot of things going on..if and how they mite be related is of no issue now? You have to go thru the whole diagnosis mill for spinal, nerve and immune issues if any to get the ultimate treatment you will need to keep on going. Gotta admit? Your 'list' is longer than mine! It's not easy? But it can and must be done.. You want your life back, I understand and others here as well? All too well! We're all working on it! :hug::hug::hug: Keep faith and keep your cool in any doc's office...never ever let them 'tell you'? 'IT's ALL IN YOUR HEAD!' It's Not and we've been where you are to varying degrees and understand that well. Just learn all you can about the varied diagnoses and keep any doc on their toes by knowing as much as a mere-non-medical-mortal can..and ASK Key questions...What about this [not treatment-more diagnosis] and work your way down the 'list' I am sure you have rite now? Keep to the BIG ISSUES tho, once you've got a doc you can work with? You can get down to the 'details'.... :hug::hug::hug: Keep faith in yourself...You are key to the total equation, and only YOU can know what will 'fit' for your problems. - j |
Perhaps I am a bit harsh... I know it's tough to be ill. The last thing I want to do is increase your stress level. I am concerned about the DMARDS though. They created a terrible mess for me. I have been through them all and Humira (is similar to Embril) works for me with minimal side effect. I have spondylarthropathy and connective tissue disease, so I understand your dilemma in that regard. It just plain hurts without them and costocondritis is the worse!
I am also waiting for lab results. I was diagnosed with small fiber neuropathy through skin biopsy. But the lab studies; it has been going on four weeks now!!! Long enough. Hope you have a restful night, Mere. |
the waiting is horrible,, been tehre done that, now i;m left with numb burning hands,, numb legs,, hardly able to walk or use my hands anymore,, this after two years of complaining, and no one listening
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But we are listening...
Mere |
When I got HIT? I was bad off, as were many others....
While waiting in the ER to be seen? PAIN AND NUMBNESS went from ankles to knees, and from hands to wrists halfway up the elbows. It got worse from there after I was released....w/o any guidance at all. And, very vague follow-up. After admittance to the hospital it got so bad?... I needed both hands to eat while in the hospital...one to hold the hand w/the spoon holding the other hand to get it 'near' the mouth? Needless to say, rice wasn't fun? Soups? Forget it! I acquired a liking for Jello of 'hospital colors' then because I COULD get it into me! At home, basic ventures, such as going to bed, bathroom and even bathing were exhausting at best? BUT That I worked very hard thru PT and plain stubbornness to get over... Be it a spinal or neuro thing that you have? It IS NOT GOING TO BE EASY! For your sake really? I hope it's spinal - why? Because they CAN FIX some things in this quarter! With plain old neuro issues, it can and does get squirrelley. But being a squirrell? Doesn't mean things can't be helped in many ways! Keep that gumption and faith in yourself and who knows? What mite happen? Good things I'm hoping!!!!!!!!!!!! :hug::hug:-j
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Hello, everyone!
No, you all didn't scare me off, however, all your information did cause a lot of anxiety and stress to my already fragile health. You didn't know this would happen to me - neither did I. I do not blame you for ANYTHING! Your knowledge WAS beneficial and am SINCERELY grateful to you all for you love and concern. You did not know me but you extended your love and caring to this scared stranger and I will be ETERNALLY GRATEFUL for your knowledge and help. In a nutshell - Had a terrible time last weekend and my neuro worked me in that Monday even though she didn't have all the results in yet. Yes, I have neuropathy but she couldn't tell me everything since the biopsies weren't back yet. She confirmed ALL the info you all had told me about how I needed to have 500 B12 as the minimum (I think I was 346) and that she needed to test the metho and whatever the other was. I was so GRATEFUL that you all had told me about this and that SHE was up on the latest info about B12. So I'm waiting see her in another week for B12 blood work results as well as the biopsy and other tests. I'm on 1000iu B12 shots daily for a week, then weekly for a month, then once a month for a year. I'm taking prescription folic acid once a day. I've been ridiculously thirsty with dry mouth for months now and I have complained about this to all my doctors. None of them considered it anything to be concerned about but kept telling me to eat. It's difficult to choke down food with dry mouth and I've lost food that would stick in my dry throat. Then I started having more pronounced diabetic-like symptoms where I felt bad most of the time, drinking whole bottles of water every half-hour and still not getting relief. This past Tuesday I noticed that if I ate fruit I would spike up and feel great for a short while. I went to my primary doc with my complaints and bloodwork showing I needed thyroid tweaking (glucose was normal but I had read some type 2s don't show up with the regular bloodtest) and asked for a more extensive diabetic test, which he did because he worries about me and wants me well. He is the saint who figured out I had a thyroid problem when everyone else said I was normal due to blood work. He actually did a scan so he saw one side was enlarged. Saw my rheumo (another saint) on Thursday as I waited for the diabetes test results and she said my body was going into a faux diabetic situation because my anxiety about not knowing what's wrong with me was engaging my fight-or-flight almost constantly. This was making my already screwed-up non-eating problem worse. She said if I kept this up I would have a nervous breakdown and be put in a home. I expressed my concerns about Actonel's long-term effects (like that Boniva *****) and how I hadn't taken it for a while and she told me to just stop it. I also expressed concerns about one of my arthritis meds and since I hadn't taken it while I couldn't eat much (if I don't eat it around a full meal it makes me sick) I hadn't taken it and it seemed it wasn't doing anything anymore. So she told me to stop it. Also, she told me to temporarily stop Enbrel for a month to see if I needed that, too. Partly I see she's doing this to lessen my stress/anxiety. I really love this woman. She gave me back my life after dealing with chronic pain in my back and chest for years. She told me I WOULD get better and I needed to stop stressing and reading/researching about all the 'what ifs' and letting the anxiety take me over or I WOULD become diabetic. She's known me a long time so seeing me like this is bothering her a lot. The biggie was the diet she suggested. She told me to start 'grazing' throughout the day to help fight the spikes and to eat mostly protein snacks - meat, cheese, nuts, peanut butter with crackers and suck on hard candy (don't crunch it but let it melt slowly). Fruit was fine in the mix but to eat it with some protein. For drinking throughout the day - lemon in water to help get my salivary glands going. Also, drink herbal tea every night and make it a ritual to relax and reflect. I did the tea that evening along with a little protein and went to bed. The next day I didn't have the terrible feeling I had when I first woke up. The only bothersome parts of my body were my right shoulder-blade and my right ankle/foot. I was NOT feeling intense problems all the way up my legs and into my groin! Naturally, I AM a little tingly there, but definitely not very bad. Throughout the day (like every five to ten minutes) I nibbled on protein - a tiny bite of string cheese, a small piece of micro-sliced fat-free roast beef, three nuts, a life-saver when I was somewhere where I couldn't pull out food or drink, and lots of water with lots of fresh lemon. Oh Lord of Mercy above! I had a GREAT day! I was rarely annoyed by the neuropathy! My back was actually being a little painful/bothersome, which was GOOD because it wasn't NUMB! I had a brace on so that helped. Sure, I got tired walking a lot and I had too many clothes on (the weather had gotten warmer than expected) but I was OUT with officemates at an art museum, and having lunch and eating my usual portion of food! So things are looking up!!! ... ... however, I really can't be here for a while since this place really DOES kick in my anxiety. The information here is GREAT and all of you are SO SUPPORTIVE AND CARING. You DID give me the information I needed to understand what my neurologist was talking about AND to know she is up-to-date with the latest treatments and supplement numbers. If I hadn't gone through months of multiple stress situations prior to getting neuropathy I know I would be able to handle being here in a more rational manner. Honestly, while my anxiety is better, it can be set OFF so very easily, and by the silliest things. Watching an exciting TV show can kick it in and it's just because it makes my heart race faster. Hearing cool music can make it happen. This is a real pain in the buttocks, and I don't mean my neuropathy/arthritis. And I need to stop driving my different doctors batty with all my questions. I need to be informed, which I am now. And it's all because of you wonderful people. Actually, it's not just here. I need to stop doing any health research for a while until I have better control over my anxiety (without drugs, of course). It's going to be a long road but I am DETERMINED to get better. The fact I felt SO GOOD yesterday is a BIG STEP. I do suspect I'll be back here eventually. Eventually I'm going to bring up Vitamin D to my docs, something I learned about here! But right now I need to relax myself and not think about anything except about my goal of getting better (which both my neuro and rheumo say will happen) and staying relaxed about that goal. THANK YOU, EVERYONE! |
I'm glad you are feeling better. Keep it up!
Low blood sugar can cause all sorts of alarming feelings. Tingling, twitching, cramping, sweating, weakness, fatigue, anxiety, etc. There are some nice nutrition bars out there with balanced protein to carb ratios. I use Zone bars. (I like the blueberry, and hubby likes the chocolate ones). They can keep you level too. I keep some near the bed if I wake up at 4am and feel awful. (if I don't eat a good protein meal at night --sometimes I skip dinner)-- one of these is very helpful. They have Omega-3s and vitamins too. If you are doing peanut butter, get the new Smart Balance one. It has flax oil in it to help keep your EFAs at a good level. The EFAs help nerves and inflammation. And yes, get that D evaluated. That alone can change your life for the better! |
Thank you for the suggestions, mrsD - you are such a goddess! :Thanx:
I will check on these. I know I will need to rest tomorrow since I did so much again today. I'm wilting quickly and I'm SO TIRED of eating all day! LOL! Yes, I feel so much better, even if I feel a little less well than I did yesterday. I am so happy something so simple has been found to manage this pain. Eventually I will add more and more vitamins to the mix to get myself up to par again and I will NEVER let myself get into this kind of state of unintentional malnutrition and stress/anxiety again. Now I need to get back to my mother, who is having non-invasive back surgery on Tuesday that will fill in the tiny fractures in her spine and relieve her pain. If only I could be that lucky! Again, Thank You and BLESS you all!:grouphug: |
Glad to hear that you had a good appointment and that you are feeling better...
Mere |
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