Avatar universal

Losing Hope

Aloha All,

Just kinda curious if I am the only one that is disappointed in the delay of the diagnosis and the lack of the Dr's able to keep an open mind and ear to be able to hear the problems & symptoms.

My reasoning behind this is - I've been complaining for a four years that the feelings in my hands are almost gone. It took me to tell my Dr that I would be disabled before they finally do something. So it took that to start the steroid treatments. The 1st set of steroids the symptoms dramatically improved and I was sooooo dam excited. After the 3rd week the numbness in my hands began to come back. 2nd set of steroids the symptoms went away but guess what its a month later and I can't even wipe.....grrrrrr  I just wonder if after 6 months if my hands will be better or is this just temp fix.

I am also wondering if Dr's truly could get the diagnosis early if they could actually deminish the future disabilities and problems? Or is it inevitable?

Just curious, frustrated, disappointed, and trying to contain my husband's excitement for the future of wiping and bathing me.

The Doctor wanted me to go back to Nursing school to finish my studies since the feelings in my hands were getting better, she even said which was a bit odd 'the only way we have to go is up'. But once the symptoms returned I lost my hope in school. Although, I decided I am going to do everything I can to get through nursing and have a medical background to help change the health care system. Gotta have a dream:):)

Nuff of my complaints and whinning...:)
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589695 tn?1218977271
I've only started this a week ago and I am already frustrated.  I hate waiting and I hate the atmosphere at work.  The mood swings are tremendous - this *****.

Sorry, spontaneous response.

Helpful - 0
Avatar universal

Thank you for your replies, it really helps. I've been feeling more and more irritated with the whole thing.
I've been dx'd with MS, though the Dr's are playing games. 3 Dr’s say it is and 1 says its not. The Dr. that says its not views my MRI and says the lesions are suggestive of MS and they aren’t active. GRRRR at one time they were active. Studies have shown that lesions aren’t always in the classical MS areas of the brain. I can consider him closed minded. Its annoying as hell. Its like everyone is afraid to admit it.
Ok, so if its not MS why do they stop their and not try to figure out what it is that’s causing numbness, pain, etc. Doesn’t make sense why the Neuro Dr. just ignored my symptoms. Common sense is pain and numbness is NOT normal.

The MS specialist I see to me is just ok but she comes off as holier than though and seems like a real idiot. The last time I seen her she kept saying ‘whats bothering you the most’, at the time I only thought about my hands being the biggest concern. After I left, I thought about it, all the symptoms are bothering me. I had talked to her on the phone, she told me that ‘my response is good with the steroid infusions, and we can only go up-hill from here’.  That’s not true, the infusion response only lasts for 3 weeks than my hands are back to the numbness. It’s just masking the problem.

I guess I am just tired of my health and future in their hands. They have no idea what it feels like and they have no idea what its like to be scared of what the future holds.

Thanks for your support and its great not being alone.

Helpful - 0
222135 tn?1236488221
You are soooooo not alone in your frustration! If you get a chance to find and read Quix's story re her trip to a Dx, more recently Craig's (monotreme). There are so many of us who've been trying to be taken seriously for years (I'm pushing 2 years now and am just now finally being taken seriously - no hint of a Dx in sight, but at least they're listening).

I'm with Zilla - follow your dreams. I put my life on hold for over a year figuring I'd either get better or be Dx'd and treated. Then I said "screw it" - please pardon my potty mouth - I'm going to live my life. It won't be as easy, but I cannot put it on hold any longer - you only get one pass through this world - take it for everything you can. It may be a bumpy ride, but its beautiful!

I've been put on steroids a few times. It gave me much needed breaks from some symptoms, but I didn't like the way I felt on them - like a bear that somebody woke up from hibernation, lol!

Anyway, live your life, Girl! Life's too short. I started with doing things only on good days; now I'm going for it even on mediocre days. I hope to work up to all days! I just came back from the first full week vacation I've ever taken in my life - I have not been doing well at all, but I went anyway and had a blast despite my symptoms!!! I shut up now...go for it

Helpful - 0
428506 tn?1296557399
Maybe I'm not the best one to give advice, but heck it's a forum and I'll throw in my $0.02!  

I've been on a merry-go-round of doctors, specialists, and medications since January '08, which as you can note from this forum, isn't really that long and is certainly shorter than your 4 years of concerning symptoms.  Foe me at this stage, I know that whatever is going on with me can not be diagnosed, at least not now.  That is just a fact.  I believe that more time needs to pass before I will know if this is just some crazy episode, or something else.  

The acceptance of no diagnosis for now was not easy to realize.  I have a mentality, not too uncommon, that there is cause and effect.  If my symptoms are an effect, some test should reveal the cause.  Well, no test is perfect, and from reading here, causes can slip through the cracks.  That feels lousy, and it is difficult not to have some solid validation from a test result to explain your discomfort and fears.  

If you think you have not gotten the proper tests, keep pushing to get 'em.  If you are not sure, discuss that with your doctors, making sure you understand what tests have been done, and why there is nothing else to do for now, and if any tests should be repeated in the future.  If every stone has been turned, then move on from expecting a quick diagnosis, and speak up for treatment.  It took several months before I got a prescription to treat neuropathic pain.  And you know what?  It worked for awhile and then tried to cook my brain!  So now I am on steroids.  

I hate going from neuro to neuro (I'm on #3).  I feel silly going back (and back and back) to my physician.  Last time I was there (Thursday), I flat out told her my fear that no one would believe me, and that I would end up not only undiagnosed, but untreated as well.  She told me that since I had beeing coming to her since Jan with the same problems, and through that time managed to quick smoking and take other steps to invest in my own health, and had never shown any medication seeking behavior, she had NO REASON to think that I was "faking."  Yes, it took months to get there, and I doubted her in the past, but going over my records with her, and hearing her say that, was a big help.  She flat out admits we don't know what set off my symptoms, but she is very serious about treating them, and even has instructed me to keep coming back if I have further problems with medications, or if my symptoms return after the steroids.   I'm not at the end of the road, but I atleast feel as though I am not stuck.  And that took LOTS of persistence, and lots of times sticking my neck out.  But it's my neck, and I'm doing what I need to do.

OK, so I am a verbose poster, but through a mixture of testimony and support, I am trying to let you know that you should not give up seeking help from your medical team.  Come here and vent, take the best care of yourself as you can, and go to those appointments and consistently plead your case.  

I admire your goals for education and changing the system.  I hope having those aspirations will help to inspire you, keep you focused, and to NOT give up on yourself!

Good luck and take care (and sorry if you fell asleep five paragraphs ago (-:)
Helpful - 0
333672 tn?1273792789
I don't have an answer to your question, but I do empathize with the fears about losing the use of your hands. I try not to think about it too much.

I haven't ever had steroids. The last neuro I saw said he could give me some (and my PCP was ready to write a prescription right then and there because I was bobbing around his office so much), but since my symptoms are gradually worsening and not sudden, he thought I would probably feel better while on the steroids, but revert to where I am now as soon as I got off. Also, as far as I understand it, if you have MS, the steroids will make you feel better sooner, but they don't prevent the underlying progress of the disease.

I hope if you have MS, you can get a dx soon and get on a drug that will actually slow the disease.

Helpful - 0
220917 tn?1309784481

I say you go for your dream, Girl!  Not because your doc says your getting better, but just to get that knowledge to make things better and rock the world!  As you said.  

Now, as for your frustration...I feel your pain.  So do many others here, unfortunately.  Have you ever looked at the Health Pages at the top right corner?  Quix and others have written lots of brilliant ones, and I have a work in progress called "Limbo-How Low Can You Go?"  I probably won't finish it until I'm diagnosed!  If you get a chance, read it. It discusses the frustration of what you're dealing with.

There is hope.  We have just heard from Elaine, Craig's (momotreme's) wife, who told us after several years that Craig is now diagnosed!  And he'll get the treatment he needs.  Sometimes it is a long journey, but there will be an end.

What other symptoms do you have, MM, and are your symptoms in your hands symmetrical?  What testing has been done?

Feel well,

Helpful - 0
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