question about symptoms

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question about symptoms

Postby HunnyBunny » Wed Apr 27, 2011 7:05 pm

Hello All,

Still going thru the frustrating stages of being diagnosed. I live with constant numbness, pain, weakness, muscle fatigue, trembling and this all got this way really fast.

I've had weird symptoms all my life, starting with migraines in late teens (I use to get them every other day and NO meds helped). Pains and injuries for no apparent reason. Carpal tunnel syndrome in both hands. Asthma type symptoms, but no asthma. Later I was diagnosed with Celiac Disease, but never felt quite right even going gluten free. But since an accident where I slipped on ice and landed hard flat on back & head, I thought it might be a herniated disk. Brain scan, X-rays & countless blood tests for disease and deficiencies all showed I was very healthy (LOL). But things continued to get worse. My GP and Int Med Dr originally suspected MS, and this is where I started lurking on this forum & joining).

I finally had my Neuro appt, but she didn't specify MS. She told me it could be one of several neurological conditions, and that I could've had for some time. She is trying to hurry other tests (nerve conductivity, and c-spine MRI). I still don't know if it is MS that I have or not.

So my question is this. From everything I've read, MS symptoms are suppose to come and go? Is this correct? Mine have remained constant for the last 2.5 months, there is never any relief - except for the pins & needles I once experienced before starting Amitryptiline (sp?). And my brain MRI came back "normal" (take that hubby). I know for everyone it's different, but there are so many neuro disorders that sound the same. I checked out Parkinson's and my symptoms also sound similar to that!

Everytime I read another study, I just become more confused. I guess it's just added frustration from being in limbo (as you can tell from my rambling). I know I'm not the only one who has or is going thru this. I'm curious for the input from those that have been diagnosed; are your symptoms and everyday thing, or do you get them for a week here and there?

Thanks so much and (as always) wishing you all well!
Amanda
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Postby HunnyBunny » Thu Apr 28, 2011 10:46 am

Hello?

Can anyone tell me if symptoms remained constant and same for a long period of time, like 3 months? or do they only last a few days, and not show up for several weeks again? I'm very curious.

Thanks!
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Postby jml945 » Thu Apr 28, 2011 1:19 pm

Hi HunnyBunny. I am like you and have not been diagnosed, even after 5 years of symptoms and all the usual tests (MRI of brain and spine, spinal tap etc). My symptoms are like yours, they are pretty much constant with occasional relief but they never really go away, they just progress over time and sometimes get worse or slightly better.

So my conclusion is this: either I do not have MS and it is something that presents itself as very similar to MS, or I have a progressive form of MS that does not present itself in the typical relapsing remitting form and does not show lesions on MRI scans. It's my understanding that only a fraction of MS patients have this form of MS which is quite difficult to diagnose because brain and spinal lesions are not often present. My hunch is that I have this, and while I am still anxious about getting a diagnosis, I am becoming more at ease with the fact that it's unlikely to happen any time soon.

Even if I did get the diagnosis, there is no real treatment for progressive MS, so it won't do a whole lot of good. I know it can be really frustrating to have physical pain and not find any answers, but the more you can ease your mind the better it will be for your body. Trust me, I had several months of daily panic attacks from getting myself all worked up over my condition and have only recently come to a place where I feel somewhat at ease.
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Postby HunnyBunny » Thu Apr 28, 2011 2:05 pm

Thanks jml, I appreciate that our situations are similar. I am gluten intolerant and I've been reading a lot lately about the relationship of gluten intolerance/celiac disease and neurological disorders. I've been told by 2 Dr's I probably have MS, 2 Dr's that I don't have MS, and 1 Neuro who says that it's probably a neurological disorder I've had for some time but was aggrivated by my accident.

I've checked out Parkinson's, MS, Gluten Ataxia, Peripheral Neuropathy, and I could have all of them LOL! :wink: I guess I should just be patient and wait, but I am not the patient and wait type of person... I need my answers :roll: I know, I know, I shouldn't self diagnose, but I use to be so active, and now I feel... stuck... I eat right (except chocolate), and try to exercise, but it's frustrating when I can't do the things I use to enjoy! I can barely walk! I want to know what this is so I can deal with it appropriately. I'm very much into natural remedy, but I'm already gluten free... what more is there to do?

Anyway, thanks for listening and letting me know I'm not alone. I hope and wish you well. It's SO not easy being in discomfort all the time. How are you coping otherwise?

Amanda
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Postby jml945 » Thu Apr 28, 2011 2:37 pm

I'm having a really hard time with it all. The symptoms keep getting worse and I never seem to get any answers. Just the other day I wet the bed and I was so humiliated that it put me into a depressed state for the entire week. That, and my wife just doesn't get it, she thinks that I'm just too stressed out and that if I just see a counselor all my symptoms will go away. This despite the fact that I am on the maximum dosage of antidepressants that any doctor will alllow and my symptoms keep getting worse and worse.

But despite all this I just try to take it day by day. I push myself to do as much as I can which helps me get through all this. I know that I'm not 100% of what I used to be, but if I do as much as I can at least I can go to bed knowing that I'm living life to the fullest... and not too many people get to claim that.
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Postby Filmmaker » Thu Apr 28, 2011 4:34 pm

guys don;t forget that fibromyalgia has many common symptoms with MS, so if you do not have brain and spine lesions, you may check into that...
Alos test for food allergies, they do agravate sx, and don't ever drink alcohol:-)
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Postby HunnyBunny » Thu Apr 28, 2011 5:30 pm

what? not alcohol! 8O LOL! I like to have a glass of wine (or two) now and then! Well, I have no food allergies, just gluten intolerant. I have 2 friends with fibromyalgia, and I've talked to them both about their symptoms... there are more differences than similarities. Between the two of them, they have more pain and muscle stiffness/tightness, whereas mine is more numbness, weakness and muscle fatigue (I'm always shaking/trembling, and I've lost almost all my strength). But who knows, like all neurological conditions everyone's symptoms can be different.

jml, I'm sorry it's such a struggle. I know it's all day to day. And it's a good thing that you are trying to keep up a life. I am too, but, like today, I can barely walk. I can only imagine how you feel with the incontinence, that would be tough. I hope that your wife will come around and be more understanding. I'm sure she'll will. It's so important, esp as you are having depression issues too to have that support system around. My hubby & kids are very helpful, but I have no other family around for help. We live in different provinces, but I know they are praying for me.

Take care!
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