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Multiple Sclerosis Community
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1207048 tn?1282177904

Newbie, undiagnosed, and confused

Hello everyone!
I've been lurking for weeks now, and finally gathered up the courage to post a question.
My background: I'm 33 years old, married for 15 years and the mom of 6 wonderful kids, ages 12, 11, 7, 5, 3 and almost 10 months.

When my youngest son was born 3 years ago, within a month of his birth I had horrible fatigue. It was an exhaustion like I've never had before. He was a pretty good sleeper, and I honestly felt that I was getting enough sleep, but it got worse over the next few months. It got to the point where I was too afraid to drive because I felt I was in such a fog. I saw my doctor and he ran all kinds of blood tests, all came back normal. This lasted about 6 months and then lifted. I still had some "off" days, but nothing nearly as bad as that overwhelming exhaustion was. Within a few months after that, my back really started acting up. I was sent for x-rays and my doctor diagnosed me with degenerative disc disease. I was given pain medicine for if it got too bad, but I refused to take them ( I did not like how they made me groogy). I got by with just tylenol a couple times a day.

My youngest was born almost 10 months ago. Again, within a month of her birth I started having horrible fatigue. Also my right hand kept falling asleep, and after a few months my fingers seemed to loose feeling. They felt like I was wearing doctors gloves. I could feel, but it seemed muted. Within a couple more months I started getting joint pain, mostly my right elbow, my feet, and sometimes my knee (or both). I went to the doctor and he ran all kinds of blood tests, full metabolic workup, comprehensive thyroid, lupus, inflammation, B12, and to check rheumatoid arthritis.  I think others but I'm not sure. All came back normal.

At this point I had joined a gym and was working out 3 days a week. The only part of me that was not almost constantly sore was my back. I was also having problems with brightness. Things that were bright, such as a website with a white background, seemed overly bright. And, I was having problems with my legs being shaky and my knees buckling after I used the workout equipment.

I had a nerve study done on my hand in mid-November. It showed slight carpel tunnel and they said that is why my fingertips felt like I was wearing gloves. The same day I had the nerve study I saw my regular doctor in the afternoon for the joint pain. He sent me for x-rays of my hands, elbows, and feet. That night, after I got home, out of the blue my hands and feet started stinging. It was really bad. It felt the way you would feel after you were outside in the cold until your hands and feet were really cold...then when you go inside to warm up they burn and sting? It was like that. It was really bad for a week, then better the next week, and better the week after that. Within a couple more weeks my hands were fine again, but my feel still have a low level stinging, but nothing too bad. By this point I had completely stopped going to the gym. Just the thought of getting the kids all packed up and in the car to go was more then I could handle.

The x-rays came back normal, so my doctor sent me to a rheumatologist. I did not tell him about the stinging hands & feet, I just figured I would wait to see the rheumatologist.

After the hands and feet thing, I started getting other weird symptoms. My hand strength seemed decreased. I have a hard time opening jars, etc. I had a spot on my left cheek that was numb, but sometimes it would feel like a hair was brushing it, but nothing was there. That lasted 2 weeks. I would get a tight feeling in different areas on my chest, it felt like someone was pushing on a spot and would last an hour or two. One night I was putting my daughter back into her crib, and as i was leaning over the railing my arms just suddenly let go. My daughter only dropped about 5 inches, and she never even woke up, but it scared me so badly. I've always been the type to carry my babies a lot of the time, and I just can't do that with Jamie. After about 5 minutes my arms are tired. This just breaks my heart :-(

I saw the rheumatologist the beginning of last month. She said I've been tested for everything that she would treat me for, and she said my symptoms are neurological. So I went back to my doctor. I was also having severe twitching/shaking if I over exerted myself (10 minutes of shoveling snow would cause me to shake so badly for an hour I couldn't do anything but sit until it passed). I'm barely doing my day to day basic things to care for the kids on most days. By 2pm I could just lay down for a nap LOL I do any cleaning, etc, in the morning or it wont get done. And there have been many times that the kids will have to pitch in to help because I just can't do it myself.

I went back to my doctor last month. He did not know about the neurological stuff up to that point. I had my suspicions that my symptoms may be MS.  I went to my doctor expecting him to say "It could be MS, but most likely it's this, this or this, so lets test for those." Instead he said "The only thing I can think of to cause these symptoms is MS" and he ordered an MRI of the brain and the neck/ top half of the spine.

I had the MRI of the brain, with and without contrast, and it came back normal. Insurance has denied the other MRI.

I saw a neurologist last week. The week before that I experienced vertigo for the first time, it was pretty bad the first day, then got better over the following 2 days. If I had seen a neurologist then I know I would have failed any balance tests because I couldn't walk without veering to the right. But since the vertigo was gone at my appointment I "passed" the exam. The only thing was I had hyper reflexes in both knees (with my regular doctor it had only been one knee) but the neurologist said since it was both knees that it wasn't an issue.

The neurologist basically said that I have symptoms of MS, but they are not presenting how MS does. I guess that means he wasn't concerned it is MS? He wants me to get the MRI of my c-spine. He said it would rule out MS (you can definitely rule it out by  a normal brain & neck MRI?) I said "Ok, if the MRI rules out MS, then what do we look at? What can be causing this?" He said "I don't know"

I basically got the impression that he is waiting for me to wake up paralyzed or blind before he will want to do further testing. I have some vision issues (I can feel my eyes straining to focus, I had flashes in my vision for a few months, I haven't been able to take a hot shower in years because I'll see gray/silver spots like I was losing vision, I will think I see a mouse running across the floor or a spider on the wall out of the corner of my eye, but nothing is there) but nothing big.

I had a recommendation for a local neuro-opthamologist who specializes in hard to diagnose patients. I'm told he is very pro-active in testing and treatment. I'm praying he will be able to help me figure this out! I can't stand just sitting around waiting for a major symptom to start up! I will be seeing him next friday, and I'm told the appointment should last 2-3 hours and I'll have all kinds of vision tests done.

I guess I just wanted to introduce myself and see what you guys thought about my newest symptom that started last night: I basically felt what seemed like a gush of hot water running over the back of my neck. It is on the left side from the base of the skull down my neck. It is completely on my left side. It started off feeling like a hot gush of water. After an hour it was warm feeling and not as strong. I described it to my husband as starting off like I had my neck under the tub faucet on full blast, then it was half blast.

Has anyone ever had this feeling?

Thank you so much if you made it through this super long post! I swear, I don't usually "talk" this much :-)
4 Responses
293157 tn?1285877039
Hi there, Welcome to the forum and you sure have alot of symptoms that sound so familuar to alot of us here on the forum.  I know it's not easy being in Limbo.. I was there for four years before I got a Dx because my symptoms did present like MS either.. so it took time and more testing to finally get a Dx..

glad your here and let us know how things go with the testing..

take care
wobbly
dx
560501 tn?1383616340
I too want to welcome you to the forum...."Welcome"
As Wobbly has already said, your sx do sound a bit suspicious. And because you have also had a lot of other mimics ruled out.

It also took me a long while to get a firm dx of MS.
Maybe you should see another doctor????
I am sure that someone else will jump on here and give you some good info too.

I have 5 children so I know that on top of having 5 children and health issues it can be
hard and discouraging at times. Hang in there though you know your body better than anyone and what is normal for you and what is not...So hang in there and you will find the right doctor  :)

Be Safe,
~Tonya
572651 tn?1531002957
Six monkeys are a lot to be chasing for someone feeling good - with you being down with all of these symptoms I hope you have some extra people you can count on for help while you sort this out.

What you have described sounds neurological and  sounds like MS symptoms.  But it could be from other things too because there are a lot of mimics.  I'm no doctor and am just going from my own experiences.

I'm not sure what the neuro meant that both knees can't have hyper reflexes.  Mine certainly do and my neuro has no problem with that.  

Having a flare of neurological symptoms after the birth of a baby is fairly common - the body goes into hibernation mode during pregnancy but often runs amuck after the birth.    Your experiences could be just that too.

I hope you will stick with us while you work through this - there are a  lot of compassionate and experienced people here who can help.

welcome again.
Lulu

1207048 tn?1282177904
Thank you everyone for the warm welcome!

I guess the vertigo was enough for my insurance to reverse their decision on the c-spine MRI. I just got a letter saying it is approved Woohoo!! LOL

So, now I have to wait for the neurologist to get back to me with the appointment for it. And on friday I will see the neuro-opthamologist. I'm very hopeful I can at least start down the path of finding answers!!

Thank you again for the welcome! I hope you all have a wonderful weekend :)
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