Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Another one bites the dust...

Apr 14, 2015 6:57 PM

I am a mixed jumble of emotions; angry, frustrated, confused, seriously depressed. I had my neurologist followup on the lumbar puncture for MS. He showed me the report and even explained it, and it was normal, showing nothing. ๐Ÿ˜ถ He said he still believes theres something going on, and there's no sure test to rule MS in or out. But he said its time another "new set of eyes to evaluate me." My right hand was having tremors and he looked at it and said he just didn't know what's wrong but he thinks I need to go to Emory or Mayo. ๐Ÿ™

The receptionist tried to get me an appointment at Emory because its much closer. I'm listening to her and she hangs up saying, "they informed me they're not taking any new patients right now." ๐Ÿ˜ฆ I looked at her and the nurse (she echoed they'd never had that happen before), got up and left. I'm swallowing back a lump in my throat and tears in my eyes, because I know what that means.

๐Ÿ˜ญ. I cried all the way home. Mayo is 2-3x distance and cost, because well have to stay overnight I'm sure. My dad was sent there a month or so ago and his hotel room cost nearly a grand, just 3 nights! ๐Ÿ˜ฑ The hospital is on our insurance, so I'm praying the doctors are too. Otherwise I can't go because we're HMO...no out of networks! Zero, Zilch, Nada! ๐Ÿ™…

I'm beginning to think maybe I am crazy. Maybe I'm creating all these symptoms. ๐Ÿ˜ฉ But then why did they just diagnose the hypothyroid & Sjogrens from tests. Maybe the ER docs right and the Ortho doc is wrong...maybe the tremors, stinging, tingling and other sensations are from my neck and back. ๐Ÿ˜ฎ And maybe the doctors around here just don't have big enough kahunas to face the task of correcting the problem via surgery. ๐Ÿ˜‰ After all, they're all in agreement that I'm "a complicated case!" ๐Ÿ˜•And they just keep bailing on me ... ๐Ÿ™๐ŸŒผ๐Ÿ™‡

Apr 14, 2015 7:17 PM

Flappy, I'm sorry you're going through all of this!
It sucks when you get moved around because nobody wants to deal with the complicated patients.
Yet it's usually us who need help the most.
It's a similar situation for my family, we can't be closer to home.
I need a specialist.
There are so many faces that they blend in my mind.
Are any of your stinging, tremors and tingling focused in your extremities?
Trust your body.
If you're in pain, there's usually a reason, a cause, something went wrong.
Stress can make pain worse, but that's life.
Hopefully Mayo will offer solutions.
Good luck!

Apr 14, 2015 7:47 PM

Thank you. All the sensations are in my feet and hands, sometimes up the calves or in the arms; stinging, tingling, temperature changes (sometimes) & tremors. I even had shooting pain down my left arm today that went across the back of the hand into the fingertips. No sooner had it stopped (10-15 minutes) than the right hand & forearm began to tremor.

Apr 14, 2015 8:19 PM

Flappys! I'm sorry, my heart aches for you๐Ÿ’›
I know that there are places next to some of the bigger specialty hospitals in Oregon that have that provide lodging for patients and family when needed. I got a room in one with St Vincent Hosp last summet

Apr 14, 2015 9:21 PM

I came here just to see if you had posted about your result. It seems so odd to wish yourself to have MS. But I GET IT.
I find myself wondering if I am making things up too. But I'm not. And you aren't. We aren't crazy. Even if it all drives us crazy.

Apr 15, 2015 8:13 AM

Thanks OregonHS & Aliya. I didn't sleep well last night because my brain just wouldn't shut down. Just a ride to Mayo is going to be very hard on me. We certainly can't afford the hotel on their campus, where my dad stayed. Then we'll have to board our dog ($$$). Its just stressful.

I wasn't hoping for MS or anything. I was just hoping for answers to why, when I'm on meds to control the tremors, every 3-7 days I get them and the other odd symptoms occurring from nowhere.

Multiple doctors have witnessed me having the tremors, and I'm seeing them for other problems (pelvic floor, bladder, knee), but they will not even treat those issues (surgery and therapy needed) until these tremors are identified and treated. I'm hanging out in limbo and everyone else is afraid to make a move!

Its frustrating that the doctors, rather than running additional tests, pass me off on another doctor. At least this doctor stated that he feels whatever is going on is beyond his knowledge. I have to give him credit for that. None of the others even came close to admitting they weren't smart enough.

I did send an email to the neurologist that Mayo is covered by my insurance As soon as they get a doctors name I need to verify with my insurance that they're covered also. I can't & won't see a doc off my insurance...it would sink us financially! So a waiting game it is... ๐Ÿ™๐ŸŒผ

Apr 15, 2015 8:20 AM

So sorry to hear this. The only thing that I can offer right now are prayers of peace and comfort. Will be praying for you.

Apr 15, 2015 8:44 AM

Thanks Amanda. Prayers go a long way, especially when everything looks so bleak. I'm so thankful for the support I get via this app community! I guess because everyone here is so familiar with pain, we all can understand and support easier. ๐Ÿ™๐ŸŒผ

Apr 15, 2015 12:52 PM

FlappsyLady, first and foremost YOU ARE NOT CRAZY!!!! I am so sorry for this dilemma that you are in and that you are so upset and undone. I wish there was something that I could do for you to help you along. I wish there were some suggestions. Call your insurance company and explain what is happening, Get a patient Liason on the phone. Tell them what happened at the doctor and that they want to send you to a hospital further away than the one you want to go to, it is in network and how do you work it with the doctors. Ususally, if an in network doctor referrs you to a hospital that is in network, the doctors are treated as in network also. Now, this could vary state to state so make sure you ask. They also have programs available to help with lodging in instances like the one you are facing. The insurance company does make allowances. Please check it all out before you get more upset. If I can help you research in any way, I will do my very best because I was in health insurance sales and claims and dealt with each carrier there is out there. Let me know. I will be praying for you each and every day and you will remain in my thoughts. Keep me posted.

Apr 15, 2015 2:01 PM

Flappyslady, I started having tremors in just my right hand. Other new symptoms or possibly med side effects are very soft frequent stools for the last four weeks and spasticity type muscle issues. I wonder if your husband is onto something with tremors being related to gabapentin. Have any of your doctors considered taking you off meds to see if they help ease any off the odd symptoms?

Apr 15, 2015 7:02 PM

No Aliya they haven't. I thought a bought coming off to see what would happen. But we remembered I had the tremors 2x last year, very mildly and without the neuropathy symptoms.

Apr 15, 2015 7:03 PM

AlwayZ I've got to check with my insurance about travel costs. I'm in a better frame of mind today. It is what it is and I just have to be patient. Thanks, and thanks to you too Aliya! ๐Ÿ™๐ŸŒผ

Apr 15, 2015 10:12 PM


I am so sorry for all the mixed emotions you are having. You and I are in sort of the same boat except my doctor says I am delusional.

But this is about you. I am sorry for all the pain and the adversity that you are having. Sometimes it seems like there is always something to kick us down but you know with all your heart just like I do that you and I are not crazy. I mean you can say that about yourself and I can say that about me. We see are problems with the redness and inflammation, we hear the cricking of bones, we touch things that hurt. All our senses are making us aware that we are not crazy but very much alert that something is very much wrong. I don't know where you live but there are other good hospitals. I don't know where you live but since you were looking a at Emory, I figured you must be close to Atlanta, GA. So I figured you wanted to go to the mayo clinic which is number #1 in Neuro and I am sure in ortho as well. They were for me. But I am not sure if that is the same standard for the Florida branch. They always refer to Rochester. I was looking at number #3 in your specialty, it is further, John Hopkins. They are awesome as well. Maybe you might want to consider looking into who has the better housing situation. When I went to the University of Pittsburgh Medical Center for a couple surgeries. They had these nice old time beautiful houses set up by an organization belonging to the hospital. They would charge $35 a night. You would have to make your bed and then put your sheets and tidy the room room. Just put things back in the place they were not clean. maybe one of those places has something like that. Just an idea. Hopkins was number 3 on best hospitals for Neuro. Sometimes you got to stop messing with the little leagues no matter how much they care and try. Places like these, I don't know if you ever been to one. You are like a king or queen. You don't have these big wait periods. You go see the doctor and they lay out your day of test. Every test he can possibly need to give you his answer. Not pieces from here and there. All fresh, all lined up for him to review and go ever on a set time set on the initial visit. They are very prompt. History is important as well, but they won't rely on those test. You probably don't know this. But after seven years of trying to get my foot reattached, after begging them to finally take it off. The mayo clinic got it right on the first try after the other eight previous surgeries.

I think going to one of these hospitals will be great for you. They are on the top of their game. Only the best can work there. You don't even need a referral for mayo or John Hopkins. I don't know if I told you I went searching around Hopkins, but they seem to have a lot of special rooming rates and situations for out of staters..

I hope you get the help you need.

Apr 16, 2015 8:21 AM

Thanks Profiler. My insurance requires a doctor referral. I'm just waiting and planning. ๐Ÿ™๐ŸŒผ

Apr 16, 2015 4:48 PM

FlappsyLady, I meant what I said, if there is anything I can do as far as research etc. on travel and lodging when something like what is happening to you takes place. Perhaps you can look into a "Ronald McDonald House" which doesn't charge patients and their families for lodging when they have to travel long distances for medical attention. So, at least that would help you to ease your mind about one part of the trip. As always, you are in my thoughts and prayers. Please let me know if there is anything that I can do to help you out.

Apr 16, 2015 5:23 PM

I will & thanks AlwayZ. The neurologist nurse called today to say shed sent my records and I should hear back from her or Mayo within 2-3 weeks.

Apr 16, 2015 5:34 PM

Excellent!!!! I'm glad for you and I hope and pray that it all works out the way I think it should..... (You are a good person, Flappsy, it hurts me to see when you (along with others) that are going through all of these struggles. Hoping that everything goes off without a hitch and that you actually get GOOD news!!!

Apr 16, 2015 8:11 PM

Thank you AlwayZ. I feel I'm no more important than any of you. My prayers are for God to help everyone of this community to get relief, help, disability, or whatever y'alls needs are.

My endocrinologist I saw yesterday ran a whole thyroid panel. She said she suspects hashimoto's thyroiditis because of my radiology reports and other autoimmune issues. Apparently my T3 is off whack too because she called in another Rx today to help it; Liothyronine/Cytomel. I'm already on the Levothyroxine for T4 cells. She said hashimoto's needs both.

Apr 17, 2015 11:42 AM

Flappsy, thanks for the information. I am only on Levothyroxine. (300mcg/day) and when I go for blood work, they tell me I am still low... I think it's because I forget to take it... I never forget pain meds because I'm always in pain (hence my screen name.. LOL) but I don't always remember my anti depressant or the synthroid. Sometimes I even take it and then don't remember if I took it that day or the day before and have to think about it. Anyway, I hope that it helps you out and gives you some balance. I know once they got my numbers in line the "storm" as they call it finally stopped and I was glad because I was ready to throw in the towel. I know that your prayers are for all who need them and you are a very nice person for being here for all of us.. I think that I get a great deal of relief from just helping or trying to help others here. I hope everyone has a peaceful day with low pain levels

Apr 17, 2015 12:21 PM

Hey AlwayZ, I & my husband apparently misunderstood the doctor. Her nurse called this am to say they'd called in the T3 (Liothyronine) to go with my T4-Levothyroxine, because she treats both, unlike most PCP docs. Thankfully, I do not have hashimoto's, just hypothyroidism. I am iron deficient. I struggle remembering meds, dates, appts etc. So I searched and found an app for my meds. DOSECAST reminds me when to take what meds, multiple times a day. I couldn't keep up without it. I take over 20 meds a day...no way I can remember all that! My sister even uses it now. Hope you have a blessed day too! ๐Ÿ™๐ŸŒผ

Apr 17, 2015 7:31 PM

Flappsy I hope that you can get to the hospital and find out what going on with you and maybe get what ever is causing your problems straightened out. As for your doggie have you thought about a walking service , they come walk your dog, feed and make sure he has water.and play with it two to three times a day. I don't know how much they charge but if he is just getting adjusted to home it might be a better situation for him,instead of boarding him. I think that they are bonded also. Or a family member or friend he is familiar with could take care of him for you. I hope they can get you straightened out so that you can get some peace. I will keep praying for you and everyone else in our community.

Apr 17, 2015 7:57 PM

Thanks Weezie. Our daughter said she'll take care of him. I'm actually wondering if one of my meds has caused these tremors & imbalance, except its not every day...its random. I wondered too if they're re TIA's, since he said I have ischemia changes in my brain. Hoping to get answers soon.

Apr 22, 2015 10:04 PM

Mayo called. They're booked through June but have me on the waiting list for the Movement Disorder Specialist. Haven't had any tremors or dizziness today, but got hit with fatigue & muscle pain this evening.

Apr 23, 2015 3:26 AM

On your 4/14 post regarding spinal tap to check for MS, with no definative results, and doc telling you there is no defining test for MS, I might disagree with that statement. But I do agree you likely need to see a specialist. My wife has had MS for over 30 years. In addition to a spinal tap, most specialist will want an MRI of the brain to look for plaques or lesions. These show up as white spots on the MRI. And my understanding is that this is a fairly if not completely definitive test for MS. My wife has her MS treated by a Neurologist and one that specializes in MS. Finding a local speacilst might be more convenient for you and more affordable. You can check out the site for the National MS Society to find a local MS Specialist. Or the site for the MSAA ( Multiple Sclerosis Association of America) hope you find the help you need and that you feel better soon!๐Ÿ˜Ž

Apr 23, 2015 4:35 AM

Ontheedge, if there is enough evidence of MS in any one of the tests it can be enough for diagnosis. However, not everyone has it show on MRI in the beginning. So, by no definitive testing it means that MS cannot be ruled out by one negative test.

Apr 23, 2015 8:24 AM

OntheEdge77, thank you for your suggestion. I've already looked for a specialist and the doc here tried to get me in their clinic, but they're not taking new patients right now. That's why he referred me to Mayo. He's not saying I have MS, he just cannot rule it out due to negative test results. From the MS research I've done and what he's said, it's the same thing Aliya said. My doctor knows something is wrong and right now his suspicion (& 2 other doctors I've seen) points mostly at MS. I'm hoping and praying it's not. But I want to know what is the cause of my tremors and imbalance, and other symptoms.

Its horrible when I get up feeling as if my day is going to be a good one, only to lose my balance multiple times while walking, get hit with dizziness/vertigo, and tremors. I have had dizziness and vertigo issues since about '07. I'm not sure when my imbalance started but I know its been at lest 3-5 years, maybe longer. I had 2-3 episodes of very mild hand tremors in 2013-2014. In February all those symptoms started all at once and all together. Each time it occurs the # days it lasts gets longer, and the symptoms get more intense. Its upsetting to my family & me. I've gone from using one cane (most days) for steadiness, to two at a time. And my last episodes required the use of a walker.

I hope that going to Mayo will bring the answers & resolutions I need. They found the cause of my dads internal bleeding when other hospitals and doctors couldn't. I hope & pray my appointment comes sooner than later. I've had 2 MRIs since 2012 and there's changes i n my right frontal lobe. Maybe its connected and maybe it isn't. But I won't be surprised if Mayo runs another one.

Thanks again for your suggestions & support. Hope you have a good day and I'm sorry about your wife's MS. Research has at least made me understand what (if) I may be facing, and its a tough road. God's blessings to you both! ๐Ÿ™๐ŸŒผ

Apr 25, 2015 9:16 AM

OntheEdge77, I reread my message, and I apologize to you & others for misstating my doctors comment. With the fibro-fog and other dementia issues, I misstate what I'm trying to say quite often. And I feel like a heel when i do, because not only does it show my mind-to-mouth gets confusing, but it confuses others. ๐Ÿ˜–

He said there are tests that when positive is MS. But he also commented that when a test is negative that doesn't necessarily rule MS in or out, because many times it takes years of symptoms to show positive on test results. And he said my symptoms have only been present 2-3 years so we may have a wait, if I do have MS. But that's why he's referred me to a higher specialized care facility. Where I live, they're still not as advanced in testing as Atlanta or Savannah or Jacksonville.

Blessings to you & everyone for a peaceful & less pain weekend! ๐Ÿ™๐ŸŒผ

Ready to start relieving your pain?

Join Community