Confused and Frustrated...

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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/1/2008 11:38 AM (GMT -6)   
mad  I haven't posted in a week or so. I'd had 65 great days followed with an episode of spasticity. Pretty severe one with fatigue. I went to a followup with a Rheumatologist for swelling in my right knee.
 
After having 2 major hospitals confirm Ms, He told me they are totally wrong. We all know how frustrating it is as we go through all of the appt's and testing and the wait....
To have gone through all of this twice for myself and actually felt so relieved to finally have it in stone (so to speak) was relieving.
 
Not anymore...
 
The Rheumy said that what I have is coming from the Kidneys. He had pulled a biopsy from years ago and said that I now must stop my neurontin. When i told him its one of the only things that helps he continued to say it would worsen my condition. I asked him why? He said I am the man who has the answer to this mystery of your health . I am the man who has the medicine you need.
 
I felt like I was looking at Mr. Pride & Mr. Ego all at once.
 
After minimizing every symptom I mentioned and the pallor in my eyes....he then said, there are a few rare immune deficiency complexes and you have one. I asked him if he thought I was just making up some of my symptoms as he quickly dismissed most of them, he said No, i hardly think you can make something stand up on your kidney biopsy.
 
I asked him if it were lupus (answer of no), connective tissue disease (again no). Simply he told me to get off all of my medication and then he'd tell me what we were looking at. Maybe he has a good point but I simply didn't feel I could blindly throw it all to the wind on his being the solver of the mystery.
 
He then talked to me very condescending. I left crying and feeling very confused about it all. In one way he'd dismiss every symptom Id mention, but then turn and speak that he knew of this great rare thing I had, and that "only" he would be able to figure it out.
He wrote a script for blood work for , circulating immune complex, checking for esr (sed rate), Anca, and Ana, Complements 3, 4.
 
I called my family doctor the next day and she said he could not do this. That even if he is right he cannot just stop my treatment for Ms in the chance that both exist. She notified my neurologist whom called and told me to come in asap. He told me that the Rheumy had given away what he was looking for on the script so he copied the labwork that was needed and I'm in waiting status.
 
Im scared. After learning that Ms isn't life threatening and going through many attacks and doctors. To have all of it in question again is very very hard. My head hurts and the stress is just about to take me down.
 
I had learned to have such a positive outlook on all of this. Sure I had my moments. Now i only have fear. Although he may be correct and/or both conditions may exist, I wont return to him. My neuro said he had no right in the way he handled it for it  is "your body".  After the  labs come back I will return to the larger hospital in a different state for confirmation.
 
 
Any thoughts? Anyone with kidney involvement from something else?
 
I now do not feel that I can take the copaxone with confidence. My neuro told me to continue it, but now I feel just lost.
 
thanks,
 
Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/1/2008 12:33 PM (GMT -6)   
Kidney involvement and swollen joints aren't particularly related to having MS. So, while the rheumatoligist might have been a jerk (and it sounds like he was!) he may be on to something. It does sound like your kidney problem was years ago? Could there be some re-occurance of that, that is causing you problems? I hope your repeated tests come back with some more definitive answers for you.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/1/2008 3:43 PM (GMT -6)   
Your right and I know it. He does know there is something. It's not his fault that there is of course. The way he handled it however really stressed me to the point of a new attack. At any rate I'm terrified it will be Polyarteritis Nodosa or Wegener's granulomatois which are consistent of the tests he wanted done.

The potential for fatalities is pretty hefty. Of course my followup with him wouldn't of been for 6 weeks. He has more patients than any other doctor. He has been in my city for about 28yrs and has diagnosed bone cancers and things that other doctor's were at a loss to recognize. I certainly know he's smart. Thats part of the fear I have!

He didn't treat me very well and I truly didn't share but a tidbit of it. He also watched me cry as he smiled and continued to make me feel lower than his own knee caps.

I thank you that you answered. Sometimes you just need to hear from someone you know? Today i certainly did.

So, since he's smart and probably the only Rheumy here that would come close to figuring it out i will return to a major hospital that has a neurological institue as well as his expertise and nephrologists once the labs come back, God forbid that they show what he suspects.

The only joint swollen is the right knee. I agree also that kidneys are not connected to MS. This was something that had been questioned a few years ago and many doctor's threw their guesses at it. Resulting in a biopsy that said the differential dx's were connective tissue, Sle, thin membrane. Then they dismissed me as things got better and felt that it was maybe from a previous infection (severe). This Rheumy says it's not that vague and their biopsy would of surely revealed what it was.

There definitely could be some reoccurance of that. I suppose when it's all said and done I'll be thankful he brought it to the light. I certainly know that I couldn't let him doctor me, as the way he speaks and treats you would keep you in a stressed state of mind. I think perhaps his fame has went to his head.

Thanks for answering, I just needed to hear from someone.

Kiera

P.S. while i have all the symptoms minus maybe 4 of Ms. I do realize that what began as nerve problems moved to muscles and then i have bone pain with a place in my chest that has been checked for pulmonary embolism (when it pops up), chostachondritis (sp) and really hasnt had a good answer.

again-thank you
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/1/2008 5:41 PM (GMT -6)   
Kiera,
 
I am sorry for all of this.  I cannot believe that doctor.  I am so sorry he made you feel so awful.  That is not right.  I hope you seek a second opinion.  I don't have any good advice for you.  I just wanted to show my support and let you know I am thinking of you.  Keep us posted and let us know how are you doing.
 
I hope you get some answers and that those answers are easily treatable.  Until then please take good good care or yourself. 
 
Love and prayers,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/1/2008 6:10 PM (GMT -6)   
thanks Gretchen. I've found that compassion is better than good news from a doctor at times ! Thanks for yours:)


To add why I also felt not at ease with him, he named a doctor who hadn't referred me to him...and had told me he was only doing the knee exrays to "prove" to me how bad they were , then on this day that he was so mean he said little to no damage (forgetting his own prediction and comments). He also told me that certain exercises i could do would only prevent further damage in lower spine and never repair any of it ( i believe this), but this time told me i could fix it.

That being said , i can see why they made a law (not sure if its everywhere) of limiting amount of patients that one doctor can have. He has way too many to remember what he says from one time to the next.

Thanks for your support-more than appreciated!


kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 1/2/2008 3:21 AM (GMT -6)   
Hi Kiera,
 
I'm so sorry you are going through this uncertainty all over again!  It must be more than frustrating. 
 
I can relate to your doctor getting you confused with other patients.  It sure makes you lose all confidence that they know what they are talking about when they can't even read the chart first to refresh their memory before blabbering on about another patient!
 
Hang in there and try not to think the worst if you can, your body and mind don't need the extra stress.  Try to find nice things to distract yourself :-)
 
Take care,
Shar
Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 5:30 AM (GMT -6)   
Hi Shar,

To be very honest it's all I could think about until yesterday. I finally was able to get my mind in some different directions. When i get that confused or scared i remain in a freezed state, not getting much done at all and feelng all the worse for all the things i haven't done.

Yes, it is very frustrating when they don't remember their own words. It might be helpful for them to listen to their own recordings even!

He had my referred doctor mixed up with a doctor whose been gone about 9 months, his prediction as if it never happened, and when i asked him why my knee swelled, he replied "i didn't say it would never give you problems". Now you know that was a helpful answer! ha :)

Thank you Shar-i truly don't think MS dx will go away for when they dx'd me at the larger hospital they did say i might have a second condition but talked so hopeful of my prognosis of ms that i didnt think the second condition would be much to worry about. I will however, have to know. There are so many things and reasons for medications that you simply need to know what organs need protected i.e. kidneys....etc

I'm going to make some more posts today to help me try to find out how much we alll have in common. I also met a lady who was an inspiration to me at 67yrs old she had MS, walked without assistance. Was R and R , and that will be in a different thread.

I am a smoker and Im not proud of it. It has been proven to worsen MS (i was told) and we all know it's simply not healthy for anyone. I was given chantrix and so was a male friend of mine who is a very negative person with no willpower. He got his first and has not smoked in 3 days, it worked so well. I was so excited until i read the package about Kidneys. It is possible to use a lower dose with kidney problems but until i know what im dealing with i have to wait? Oh..how i want to quit! My own willpower isn't too bad but right now to do it without help would be more stress. So, I so want to take that chantrix!

Have a great day shar and thanks for the post
p.s. where is this chat thing ive seen others speak of, do you know?

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/2/2008 10:11 AM (GMT -6)   

Hey Kiera,

Look at the blue, horizontal bars near the top of the page.  The second one down on the right - you will see the word "chat".  Click on it.  When it opens you will see a drag down bar and a sign box.  We have our scheduled chats every Monday(6 pm central).  You could try it out if you see others on.  Just choose the "room" they are in and go and say hi.  Try it and let me know if you have any trouble. 

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 10:57 AM (GMT -6)   
thanks, i'll give it a try!



kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/2/2008 2:13 PM (GMT -6)   

Hi Kiera,

 

I am so sorry you are going through this right now, and truly hope that your tests do not show anything serious. I was thrown back into limbo after 9 months on Copaxone. I found it very hard to have my “answer” taken away. Like you, I certainly do not want to have MS, but going back to that unknown has been difficult.

 

I am very fortunate not to have such serious conditions as possible alternate diagnoses, and can only imagine how much added stress that must be causing you. I can definitely relate to dealing with docs with poor bedside manner and too many patients though. The neuro who questioned my ms is the very same one who told me my cis had moved into ms, and pushed me to start copaxone…go figure. He was quite rude about the whole thing, and I was devastated when I left his office. Luckily, he did refer me to an ms specialist who seems to be a lot more knowledgeable and compassionate.

 

 I am so glad you will return to the larger hospital for a second opinion. Hang in there, and try and take your mind off of this as much as possible. I know that is much easier said than done, but as Shar mentioned above, the stress of worrying will only make you feel worse. My strategy for waiting on pending doc appts, test results etc, is support (communicate with people who understand and support you) and distract, distract, distract. While this is certainly not always effective, I do find it that it helps in my ability to deal with the unknowns and what ifs.

 

 I hope to see you in chat sometime.

 

Sunny


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 2:43 PM (GMT -6)   
Thank you Sunny and nice to meet you. I'm also sorry that your in limbo again. Not knowing is something else. I know that i could take much more pain when I thought it was Ms and Only MS, now it's as if I wonder what each sensation might be. I refuse to keep my mind this way though. Thanks to the support here and a friend in my hometown, I'm not allowing myself to consider it any longer until the labs come back and i get to see it for myself. I can't change anything from now to then anyway.

I have a question about what happened to you. I think I saw a different post perhaps 2 weeks ago of someone with cis (i had that dx too, go figure), and they remained on copaxone and said something about it could keep ms from happening. Was that by chance, you? Or...no?

I suppose my other question is if it isn't you, are you still taking copaxone?

I surely hope you get answers. Was it a one time incident in your belief too or do you continue to experience many symptoms?

Thinking of you and will try to see you in chat also!

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/2/2008 4:16 PM (GMT -6)   

Hi Kiera,

 

Good for you for taking control of your worry...that is such a great attitude to have! I’m so glad you have such a supportive friend too. Please do continue to post here, and we will try and offer you as much support as possible. I’ve met some really great people on this site, and don’t know how I would have gotten this far without them.

 

Yep, you are right, I was the one who posted the new info on Copaxone and CIS. I’ve been off Copaxone and symptom meds since August; sorry that wasn’t clear in the CIS post. What I meant by my comment was that I’m happy I was on Copaxone for some of the time I’ve been sick, as it does look like at a minimum I do have CIS. As for what happened to me, my continuing issues, etc…at this point it’s so long and complicated I don’t know where to begin, lol. Below are the posts I made about what’s happening…feel free to read any or all of them.

 

http://www.healingwell.com/community/default.aspx?f=32&m=890348

 

http://www.healingwell.com/community/default.aspx?f=32&m=929411

 

http://www.healingwell.com/community/default.aspx?f=32&m=963457

 

Sunny


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 3:19 AM (GMT -6)   
I've read them all and thank you for making that easy by providing the links.


I'm still curious as to the types of symptoms you have in your legs and feet/I saw references to them but almost as if they'd already been explained maybe earlier somewhere.

Anyway, if you feel like it and have the time could you let me know what is happening with your legs/feet/ankles.

Ill pray for you, and your squirrels 2!

thanks
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/4/2008 7:55 PM (GMT -6)   

Hi Kiera,

 

I don’t know how helpful this information will be, and as you know this stuff is hard to explain. My leg symptoms began with severe pins and needles in my left foot. My ankle felt weak, and began buckling when I would initially put weight on it. The pins and needles then turned into hypersensitivity to the point where I couldn’t stand my foot touching the sheets night.

 

I would also get these abrupt shocking sensations that made my foot contract…these happened many times a day and night. The extreme hypersensitivity stayed below my knee, but I had “altered sensation” into my thigh. While I still have some issues with that leg/foot (slight weakness in ankle, tight feeling, pins and needles, spasms, etc), it’s nothing like before. Weird stuff, huh.

 

You also asked about my experience with clonus on another thread: When the neuro pushed my left foot down, I remember thinking whoa, what in the heck was that? Apparently, it was 3-4 seconds of clonus (per my medical records). It’s very hard to explain how it felt, but I would say it’s kind of a twangy bouncy sensation. Maybe someone else will have a better description?

 

Hang in there and let us know you are doing J

 

Sunny


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/5/2008 5:57 AM (GMT -6)   
thanks sunny


When my ankle buckled and i had to kind of drag it with me, i considered this foot drop. It might not of been though. It wasnt painful and like yours tended to buckle. The pins n needles have been mild thus far but i have had shooting pains in longer limbs w/aches/weakness.

When my foot contracted to the right it was very painful. I don't recall it feeling shocking though.

Ive never had the bouncies but I think I got a visual of what your trying to describe.

I'm very glad that it's eased up on you:)

thanks
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/5/2008 5:38 PM (GMT -6)   
Hi Kiera,
I really am knew to these rooms, and so I have been trying to get to know some of you just by reading you bulletins. I have already come to like you! ;)
I was just curious, Is this Dr. who told you that you do not have MS a young one? I only ask this becasue Recently My primary changed and I picked this one guy, Young, new, and he also did Acupuncture Mixed into his primary practice, So I think, wow...2 birds in one stone, So I give him a shot. He didnt try and tell me I didnt have MS, but he was that Young, new, cocky typre. Infact her swore I had a million other things. I mean I left there thinking I was doomed.But he made it all seem like he KNEW ALL, and could FIX ALL. Anyhow, after seeing him for a few months...he just up and walked away. So I had to pick another MD. Well This guy was floored at all the 'finding' the last guy found. I do have MS...I knew that. But I dont have the million other finding the other one found....or thought. But he did mention that alot of my meds I have been on, which the benifit out way the risk, But alot of those meds, are not so good for my liver, My kidney,my heart. So with that in mind, maybe you do have MS...although would be FANTASTIC to think you could have something else with a cure, that would be good huh? I have no clue what meds your one, but could that at all be the case that is causing your levels to be off? I do not mean your injections. I know sometimes I have to switch up My pain meds etc. Just to gove My body a break.But again, weighing Risk and Benifits. I may sound like Im rambling, In fact Im sure of it. I didnt get much sleep last night!~~Sorry if I over stepped or gave any unwanted thoughts.- But it may be worth, takeing out all of your meds out of your cubbard(I have a bucket do you?)...But look them up again, and see what all the adverse effects are. You never know, you may find your own culprit!!
Hope all goes well with you. I know I dont know upi, But I have you in my prayers Kiera!

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/6/2008 3:59 PM (GMT -6)   
thanks, what a sweet thought and hope for me.


Unfortunately this doctor is older, and they come from all around for things that elludes other doctors. Bone cancers etc. That's why i kept my appt with him. I had a swollen knee, but i also knew he's spot lupus if it were in the mix ups.


When first dx'd 3yrs ago i was told my kidneys were a sperate conditions (although no dooming news with it).

Then the last hopsital (major) said there might be a second thing-but kept talking about how id never end up in a wheelchair from what the've seen. (just seems normal that theyd not talk that way if they thought i had a killer disease).

So, Ive known that its been suspected I have a scondary condition.

So the doctor is older/wiser/and has acclaimed fame in this area. This may not be FOR him but rather AGAINST him, as i look back on a few things.

#1 he told me my legs were'nt even straight and both knees were shot and needed surgery, he would only do the exrays to "prove it to me". (they came back fine) when i asked what about the swelling, he said "never said they wouldnt give you any problems.

#2 When he wished for me to stop neurontin (could of been for valid reasons but he withheld that), he couldnt remember the doctor I came from.The one he mentioned had been gone 9months or longer).

#3 The exercises he told me to do , the first visit was said to only prevent furture damage but could never FIX anything. This time it could suddenly fix.

With all that being said, and pls trust me it's a vey small amount of all the things that didn't add up, he's bright, but not very up in memory. Seemingly more up ^ in ego and pride. I do know the stress he offered is something that no MS person should allow in their life.

My other doctor's came to the rescue, and have made certain to do all of the major hospital's labs along with his. To try and solve the mystery. If it remains a mystery they have full plans on returning the major hopsital for final dx's (hopefully only one).

Your concern is so sweet and thoughtful. It would be great not to have MS, but as you know; once we get all of these symptoms , simply saying you dont have it, does nothing for us. I ried numerous time to belive mine was psychosomatic only to have my legs twist and my left eye gain blind spots. The heat sensitivity is surely not in my head, and causes leg muscles to visibly jump. We know our bodies. It is possible that its a diff disease, but shot in the dark, i had even celiac ruled out. Would be more probable that 2 coexisted and believe me, I'm praying that that's not the case.

You taking the time out to post this,meant alot to me. I want you to know that. So, yes i like you as well. Very caring person that you are. Also toatlly affirmative and supportive. Again, I thank you!
I like you as well and you add much interest to this board:):):)

Thanks for all of your suppot, it had helped until tomorrow when i can find out what the lab work showed.


Your in my prayers also!!!!!!!!!!! As a mater of fact, im going to lie down for a bit and will pray for you before i drift off.

Hope the rest of your day goes good for you!


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/6/2008 6:13 PM (GMT -6)   
Thanks for your kind words. Please post tomm when you get lab results, My prayer for you is that 'whatever it is' That they can find it and help you wherever needed. I do hope its just one thing. But whatever your results, i do know that we are only given what we can handle. I have learned over the past years to Not say " I cant take anymore' Everytime I say that....I have to proven wrong. haha.

Sleep well, and please update this tomm, I will be looking.

Lori

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/6/2008 6:20 PM (GMT -6)   
I've kind of experienced what you have, in the way of saying , "i cant take this anymore " only to have 3 more things added lol. If id shuddup I might of only had 5 things. When i post im not sure what all ill be putting. As the girl who drew the blood it took 3-5 days to get back (its been that now), and he (neuro) said he'd see me in 2 weeks but didnt't give me a followup card/someitmes/sometimes...............

ah well, either way, I'm in good hands yanno? (GODS)


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera

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