I’d Just Like To Know !!

I haven’t written much lately on some things going on related to previous posts, for two reasons; one I don’t know still exactly what is happening exactly and two; I think I wrote maybe too much about them previously. But to give an update.

Just to let you know that I have had contact with my daughter and spoken two or three times in the past couple of months. As she has requested we will talk about current issues and things in general but not of the past. While I am willing to do this, I have found still the calls seem so strained and not natural at all. I find that I’m worrying that I’ll say something wrong or that perhaps she doesn’t want to hear. However, I am hoping that with time, prayer and love, it will get better.

The second thing is that while I had the surgery (Turboplasty and Septoplasty) back in November because I was not able to breathe lying down and therefore had to sleep in my lazy boy for many months waiting for the operation, and it was successful, another issue arose (very shortly after) and I find myself back in the lazy boy for much of the night.

It’s not really a topic that is pleasant to describe but basically it relates to my throat and swallowing so that when I sleep for awhile, (lying down) it is short-lived and I end up going back out to my chair. I am therefore not getting good sleep ‘again’. The problem is that my ENT thought it was something my GI would be able to help with, and vice-verse, and so today after seeing the ENT specialist I am back to square one. My next step is going back to my family doctor to see who and what might help.

I’m feeling like both the specialists are not thinking it to be especially important. In fact one of them said, “your symptoms are all ‘non-specific’..  lots of people have this, this and this.” Then the other one said, ” I don’t know what to suggest, you’ve got me stumped, but it’s not something I can help you with.”

This is all too reminiscent of prior to me being diagnosed with MS, and I would describe what to me were significant and unusual symptoms for me, and my doctor would give me some routine blood work etc. to get done. Then when the results came in and didn’t show anything, he just shrugged his shoulders, scratched his head (so to speak) and said he didn’t really know of anything else he could check, except of course he would give me some anti-depressants, indicating he thought it was all in my head. After 2-3 years of this off an on, I ended up in Emergency one night with what was an extreme headache I saw an Internist. After approximately 10 minutes of him asking how my health was in general, and then examining me, the said that I should see a Neurologist…. the rest is history.

So I’m feeling a bit paranoid right now, and while I am not thinking this is anything life-threatening or anything like that, I am feeling so frustrated and just plain tired. I’m hoping that my family doctor will take me seriously. I’m even wondering if this has something to do with my MS and should see a Neurologist, since I haven’t seen one for about 4 years, as I’ve been stable for the most part. The last thing my doctor said was that since I was not currently having a flare-up as far as she could see, the specialist likely wouldn’t think I needed to see them.

Perhaps it’s something else??

In any case I guess I’ll call next week, and just hope to be taken seriously. For those of you who pray, could you maybe just say a little prayer in this regard. As I said, I’m just sooooo tired. Thanks Diane

p.s. today (I wasn’t)  and this weekend I won’t be online too much, so may be delayed in reading and commenting etc….. 

44 thoughts on “I’d Just Like To Know !!

  1. Diane,
    Not sure if you caught in Facebook that I’ve been trying to figure our my chronic severe pain, but it makes me pray even more for those who know pain as you do. I pray for you. It’s hard inside the struggle but I feel God telling me to share inside the struggle what He is and does. So I’ve shared on FB and on my blog. Am sharing more. I know you read the blog and want to say thank you.
    I’ll continue to lift you up to Jesus.
    Heather

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    • I do read your fb and blog..but I’m behind lately for various reasons. I have to catch up… What do the doctors think about your condition.. have they absolutely ruled out anything…. ? It’s strange the last thing you wrote on fb that I did see is that you slept last night… and I too got more sleep than I have in a long time… In the morning had to clear what usually gets me up in the wee hours… from back of throat..etc but I do thank God for some respite…. Thank you for your prayers and I will do the same for you… I have many wonderful people that are praying.. and I know that He answers… even if it’s to find out what the issues are ….Diane

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      • Diane,
        I can not get into the doctor until April 9th. I’m sure I will have blood tests done. I haven’t in years.

        The symptoms are many and I’ve realized I’ve had them for many years but blamed them individually ok separate things. I’m going to continue my research. God has led me many times to what I needed. I look to Him always.

        I really appreciate your prayers.
        Hugs!!

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  2. I am sorry your going through the turbulence you are with your daughter. I can tell your un easy and not only will we say a prayer tonight about your health issue but also for you and your daughter. I can tell you love her very much.

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  3. Yeah, consult with your neurologist. an expert in the field may have a better chance diagnosing the cause of your symptoms. I hope you get some relief soon. 🙂

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  4. It’s like you’re supposed to just accept that they don’t know what it is… and they don’t seem to care to look ‘outside the box’… I’m going to my family doctor tomorrow and I’m going to tell her I’ve been looking online because no one seems to know …. I read where sometimes an under-active thyroid can sometimes cause some of what I’m experiencing..including some things I’ve noticed..changes with that I didn’t of course put in the post…but it’s just guessing .. Maybe she’ll at least check it out with blood work? I’m getting my esophagus dilated again and he’s going to take some tissue to see if it ‘celiac’ is a possibility… He only decided to do that when in exasperation after him saying ‘there’s no reason to go to an internist because your symptoms are all ‘non specific’..nothing to check.. and I said ‘well I’m not going to give up looking because I can’t live without sleeping.. then he hummed an hawed and said well maybe I could check…….. ..but that’s April 23rd…

    Oh well I’ll just have to plod along… Thanks Patty…. Diane

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    • We tried to get Tom into a heart doctor but like you said because his symptoms were non specific we could not get him in, they said he would need a “heart problem” I feel like calling them and asking them since his heart stop beating would that be considered a heart problem! Our family doc tried but with no success because his stress test was normal as other heart tests he was able to order, but like he said after Tom died a few months later he could have had a problem that was undetected, but we will never know for sure. I often wonder if things would have been different had he got into the heart specialist. Keep pushing – because you are right a under active thyroid could be the culprit.

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      • I was wondering if he had been checked for that because I remember you saying it was his heart…My dr. said yesterday that she checked my thyroid and I kinda hinted at … wondering how long ago ( I know it was months ago) but she seemed to think she didn’t have to check it again..and doesn’t think even if I went to a Neuro that it would be anything IF it was related to MS that would warrant going… ie any MS medication… and SOOOO she suggested since it wasn’t my nose and not my reflux…that maybe it was in between… an inflammation possibly in my throat and gave me Advair which is normally used for COPD but I checked and the corticosteroid in it is to help with inflammation in the lungs.. so maybe she thinks it’ll help in the throat… so she wants me to try it for 2 weeks and see and go back to her… All I can do is try I guess…and see… Diane

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  5. Your story sounds so much like what we had to go with Tom. He was so exhausted and slept over 12 hrs a day. We kept getting it is rare part of chronic fatigue but not chronic fatigue, he should exercise, although exercise would make him more tired, he should lose weight, and my all time favorite from a quack we stopped seeing, learn to live with it…. among other things. Our current family doc (our old one we had for 16 yrs is now head of the hospice center here) was great with Tom, he never gave up and worked with the insurance to check him for things like MS and although he did not present typical symptoms he checked him for PAD (Peripheral Vascular Disease) and Parkinson’s. It gets very frustrating when doctors don’t listen to you and it took us a few years inbetween doctors to find another good one who listened and worked with us. We never did find out what was wrong, but he never gave up hope and would not let us either. Prayers are with you that they find something soon so that you can not only find solutions to the problem but give you peace of mind. Hugs!

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  6. What a struggle. Hopefully, your PCP or neuro can find something so you can sleep! As tired as you must be, keep searching. Sweet dreams to you my friend. 8)

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      • Even if it something that can’t be fixed, I would think it much easier to deal with once you know the cause. What makes it worse, better, will it do what it wants no matter what I do? Will it get worse, or cause another problem? Most all these questions could be answered once the source is known. Good luck!!!!

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  7. Disappointing to find out you’re struggling with health issues again. Just a suggestion, but have you tried an antihistamine, or decongestant? Could it be a sinus problem? I often get phlegm so thick it is hard to swallow (gross I know, but true). Sometimes it feels as though I might choke.

    On the other hand, MS can cause swallowing issues, so you might reconsider seeing a neurologist, and go to someone specializing in swallowing/throat problems.

    As to you speaking with your daughter. I am thrilled to know she has opened the door to communicate with you again! I know it is strained, and you desperately want to know what happened. Keep respecting her boundaries, and she will likely loosen up. Have you ever fought/argued with a friend so much that you don’t speak to her for a bit, and when you do, it starts out pretty strained, but soon returns to normal.

    I send you thoughts of peace and happiness and hope you resolve your new sleeping problem. It is draining to be continually ill and I send you thoughts of strength and peace as well.

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    • Hi… definitely have tried anti-histamines and decongestants… ENT doctor says nose/sinuses okay… GI doctor says not associated with GERD…. It is excess saliva/mucous… Sometimes it’s like a tap…just continual…and can’t always swallow as gets caught in my throat so have to *gross’ spit it out.. Bad at night as when and if I finally can get to sleep it collects in my throat and I wake up and gag like crazy and then it just keeps flowing…. To top it off at night whether or not I use the CPAP…really have stopped trying… but because I mouth breathe my mouth dries up and feels like sandpaper… Even with cpap…because it blows air… I went into details with you because you understand… Maybe it is the MS .. I just don’t know where my family doctor will go from here.. Obviously the salivary glands are over-producing… Oh and tongue is sore still too.. Wow…. did I just give you TMI or what !!!! Oh and re my daughter… I am so hoping it returns to somewhat a normal conversation without the air of ‘caution’ her side and mine Diane

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      • No, not TMI, an honest talk. I wish you the best in finding a solution. I know you said your sinuses are ok, it doesn’t mean you don’t have chronic nasal drip, like I do, and a build up of phlegm as you sleep. I’m sorry antihistamines and decongestants are of no use (I have found the same). Perhaps a Netipot? Or some other nasal cleanse? I’ve used one before and it can work wonders on most sinus issues. I haven’t tried it lately, but I might, just to see if it helps with the post nasal deluge (it’s no ‘drip’).

        Sorry you’ve got that sore tongue thing. It is extremely uncomfortable. I used to get it real bad, but it’s been less the past few years. I try to spin it to the positive and say, at least it makes me eat less. lol (Gotta save that sense of humor!)

        Again I send good thoughts your way and wish all good things on you and yours. ((hugs))

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        • The most frustrating thing is that the ENT said no sign of anything that would cause post-nasal…and I even have done the nasal rinses… and some other meds from the specialty health stores like oregano oil… made me feel worse… and cough meds with phlegm and mucus relief supposedly… so you can see where my frustration level had been heightened… anyway… there HAS to be a reason. We just need a medical Sherlock Holmes lol Thanks for caring Diane

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    • Thanks Deb.. I can’t believe how long it’s been since I’ve had a good night’s sleep… I know others have so much more to deal with than I, …it’s just that it’s so hard to enjoy life to it’s fullest (or even half full lol) when you’re fatigued… Diane

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      • It sounds like you have a lot to deal with of your own. I know what you mean about ‘hard to enjoy life to its fullest …when you are fatigued.’ It is next to impossible! I don’t remember sleeping through an entire night either. I’m either awakened by the hubby needing help with checking his sugar or I wake up to make sure he is okay. Hugs* Deb

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