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Feeling so lost and tired of being in limbo

Hello,

I would like to introduce myself. I am new to this board and have been reading so many of the threads here. Which have been very helpful. I was hoping for some words of wisdom from anyone willing to tell me what they think. I have not yet been dx with ms, but have had MRI of brain in 2011 that showed one lesion in the white matter.

MRI was repeated this past september. I am very sensitive to heat and wasn’t outside for very long but when I came in, I noticed something very different happening to me. While sitting on the couch, my legs started to go numb. They were very heavy and didn’t feel like they were mine, I could look at them and knew they were there, but they didn’t feel right. Also my speech started to slur, like a lot. My husband told me I sounded drunk. ( I don’t drink) and my gait was all over the place, couldn’t walk a straight line. My legs were so shaky and wobbly under me. I had noticed a incontinence problem with this too. My memory has been declining rapidly and I was unable to complete the simplest of tasks without forgetting how. I would loose my words and forgot the name of things, such as " chair" or table, etc. For example: I put my coffee in the microwave and shut the door and then my mind went blank, I just starred at the control panel forgetting what I was suppose to do next. My body would also have tremors with movement… Like my head would just bobble like and I couldn’t stop it. My left leg and arm will go numb still since this first bout in sept and I will feel tingling down them, I’ve described the feeling like electricity running through them. Also, this doesn’t happen too often but has been happening over the last several years but recently more frequently and that is when I am resting in bed I will be woke up from my body vibrating, kind of like in rythm like a cat does when purring. It can be pretty strong at times and it only last for a couple minutes and then goes away. My muscle weakness has dropped by at least 60 % and now it is at the point if I try and do physical attivity such as taking a walk around the block, my legs get so weak that my left leg will go numb and It feels like I have to slide my leg forward and it drops down heavy on the ground.I needed the assistance of holding onto my husbands arm to keep walking till we got home. I’m 46 yrs old and over the last year my health has gone down hill greatly. I started to complain to my pcp 2 years ago about loosing my balance for no reason, and I would have periods of dropping things like my hair brush, or would have to focus when picking up a glass so as not to drop it. That is why the MRI was done 2 years ago.

Balance problems are much worse now, and I had my first bout of vertigo ever in my life on oct 1st of this month, and I fell over. It lasted about 12+ hours. The room stopped spinning but my eyes whenever I moved them would make me real dizzy. I couldn’t walk without assistance. I still have balance problems and sensory issues. Anyway this mri showed the same lesion but they stated " There is a solitary hyperintensity noted within the subinsular white matter on the left". " Differential diagnostic pissibilities include demyelinating process such as multiple sclerosis, microvascular ischemic change and less likely infectious or neoplastic entities."

My neuro doctor simply said that the lesion isn’t where ms lesions are found so she is ruling ms out and that for all I know the lesion could have been there from birth. She ordered no other tests to be sure of this. They sent me for a neuropyschological test for my cognitive issues. The pysch doctor spoke to me at the end of that exam and told me it’s all in my head basically and dx me with depression and anxiety. I about lost it. I was struggling real bad that day during the testing. It was a long walk from the parking garage to her office and I spent all day there, so I was in a lot of distress. She probably saw the look on my face and the shakiness of my head because of the distress and simply thought to herself " depression" . She tried to tell me about Rx and I told her basically what she could do with that Rx.

I should mention all blood work has come back normal. Lupus was ruled out and b-12 level was great. I am positive for the HLA-B27 gene. My rheumy told me about that and told me to make sure I mention it to any other doctors that I see.

I feel so discouraged that no one seems to care about helping me. I had to quit my job at a dental office because I couldn’t do my job at the front desk because my memory issues got bad.

Sorry this is so long, I am hoping someone here can relate to me and have some words of encouragement.

Thanks :slight_smile:

Hello there

so sorry to hear how tough things have been for you. It’s not easy is it when you’re not taken seriously, and depression / anxierty come into the equation. That’s maybe why I’ve put off going to the docs for so long…

It seems odd that you have lesions, but then the psych diagnosed you with depression. Have you thought about a second opinion. From what I’ve been reading, then this is common, and lots of people talk about getting a further opinion on this.

They can quite insensitive, can’t they!

x

Lots of hugs to you! I’m sorry to hear you’re having a really hard time with this. But I promise it will get better.

I agree with Morph I think you should get a second opinion. If you feel something isn’t right, you have the power to get to the bottom of it and don’t let anyone stop you!

Stay strong and just breathe deep.

Best wishes and luck

Tsuki xx

Hang on in there…

I had 1st symptoms 4 years ago and only recently found out (by accident) that I had been diagnosed. My faith in Neurologists has gradually declined over the last few years… I have met 4 and 2 were lovely, whilst 2 were arrogant arseholes (sorry but I couldn’t think of anything milder)!

I certainly know that feeling of no one taking you seriously or offering you assistance and there have been times when I have felt like I was going mad. Have also had lots of grief at work, owing to a lack of compassion or understanding. However, throughout my long journey to diagnosis, I have found this site invaluable… The people here are extremely caring and understanding and most, I am sure, will have felt like you feel now.

Hang on in there & know that you are not alone!

Hugs

Tracy

thank you Morph,Tsukiusagi, and Troski for your comments.

I guess one of my big questions is… Why don’t specialist or any doctor for that matter care to do tests to rule out things that either mimic MS or give the same symptoms that we are having?

I mean it’s not only been a problem for me for only a month or less, this is on going for years of neck pain and stiffness for example, and severe muscle pain and stiffness in of the upper torso, back, ribs, arms, shoulders and neck.

Those are just to name a few. But since september I have not been able to regain my normal gait back. I will have my moments where I find I am walking pretty good and faster gait, but then it will come out of nowhere when for no apparent reason I will be standing still and I will sway backwards like i’ve been pushed from the front, or I will be walking and I keep drifting to the right, like a magnet is just sucking me in that way. I will walk back to the left and try to keep on center, but it does it’s own thing. The other real bad thing that came along with the balance issue, and gait problem in september was my speech and memory is horrible. When I am in a lot of pain, I notice the most that my hands will over shoot where they are trying to go and I smack them into things, I forget simple objects like a chair, or bookbag. I look at them and can’t remember what they are called. My body seems to tremble to during this, not so much where people see it as being obvious, but enough to know that it is a pain in the duppa to calm my legs enough to walk right without being noticed that I am struggling.

Thank you for the warm welcome and yes, I did notice how warm and friendly as well as helpful those on this board are from reading many posts here.

I hate pills, rx drugs etc and have tried very hard to control this naturally. Pills just scare me to death. Because I also suffer from fibromyalgia, my system doesn’t take kindly to any foreign drug , even the simplest drug to be put in my body.

Hi and welcome

From time on this site I reckon people in their 40s like you and me are hard to dx. I have had 4 MRIs and 2 LPs and still got no real answers.

Have you had a spine MRI ?

I have something dodgy on my spine which has caused a gradual decline in my walking. It is not fine one day and bad the next. I can isolate the problem to only the right leg and that is a combination of weakness and spasticity.

I read on here that people in there 20s who have RRMS can have loads of lesions in spine and brain and walk about fine. And then there is us with one lesion in their 40s having such problems!

Moyna xxx

Hi Moyna,

I have had 2 mri’s of the brain and one cervical mri but no mri of my full spine. My neuro’s just don’t seem to care to look any further.

They sent me to a neuropsychological doctor who has lost her mind and right from the get go told me it’s in my head and I would benefit from counseling and meds. I about lost it. She said I am depressed and full of anxiety. I am so tired of explaining to people that I am not depressed, the look on my face and the fact that I might be irretable is because I am in constant distress and pain, and I am trying to cope the best that I can so that I can do what needs to be done. My health is steadly declining and I can’t seem to find out why. I’m so sick of people telling me " oh you just need to exercise or yoga or go do something to get my mind off it". The thing is is that the moment I feel even a little better, I am up and running getting things done that I just couldn’t do when I was worse. I like to do yard work, and I enjoy being in constant motion working somehow or other, so when someone tells me that, it simply hurts. :frowning: They have never lived in my shoes. I can’t do much physical stuff at all or I am in so much pain all over, I can’t do anything else but cry. Like yesterday, I broke down and cried because i bent down to put my dish soap under the kitchen sink but when I lifted up, I didn’t move my head out of the way and banged it on the underneath side of the counter. It’s not like it hurt that much, it was the fact that I’m not able to have the perception I need to accurately move my body parts. Like over shooting with your arm when you reach for something and you thrust your arm forward but seem to have no control over it, and it ends up knocking things over instead. Or you try to do things with your hands and your hands simply are cooperating and can’t grasp things right.

Yesterday my son’s paternal grandma had her funeral and by the end of it, my walk was so shaky that my footing just was so staggered. I know people were looking at me like " what is wrong with her , she was walking normal earlier. My head then started it’s ever so small bobbling. My body stiffens and it all just completely sucks. And sitting in limbo doesn’t help.

I hope you have a blessed day today Moyna. Thanks for commenting.

I do hope you manage to get a diagnosis (of something) soon, although it sounds as if you will have to fight for it. I just wanted to say that I can relate to your last post as I poured half of my soup all over the work surface instead of in the pan today, I just lost control. Also when people look at you wobbling. I gave in and got a pretty walking stick and now people just accept it. It’s like you’re allowed to wobble as long as you have a stick, without one people wonder what on earth’s the matter and stare. Strange but true!