I feel for you!!! I'm in a similar position. It's very frustrating and frightening to go through. I'll pray for you that you get a dx soon!
You are not alone in your feelings, in the situation you find yourself in and all. Would you add some dates to the onset of your symptoms and what's gone on since then? Weekends are often a little slow as, some people have real lives, lol. We'll all be by to help. I'm the resident (retired) doctor with MS. Read back on the forum and get to know us. We have lots of ideas for you to explore.
Where do you live?
Hi Qhixoxtic1 , my symptoms started suddendly on August 22,2007. He got a little better after the Solumedrol Tx. But came back and still on going. And being stop working , for another 6weeks.
Im From New Brunswick Canada
I'm so sorry you are going through this, but you have come to the right place. We have the most caring and loving people here you will ever meet. I know Quix will be able to help you and some of the others too. I do welcome you and I will pray for you.
Thanks Carol, i really need the support because i dont have if from my end right here. Im glad i found this site, it's really interesting!!!
Talk to you soon, were are you from??!! :)
Welcome to the Forum!! I am sorry you are having so many scarey symptoms! You are not alone, alot of us here have most of those same symptoms and we are searching for answers too. There are also quite a few here who have been diagnosed with MS and can share their experience with what it took to get that diagnosis and what their lives are like now.
There are alot of great threads worth of information here so read as much as you can and I will be praying that you get some answers soon!
Thanks Kristin! Im sure they are lots of information in here, and i need to take the time to read them ahah Im alone tomorrow and i will read some of the info!!
Thanks for your support xo
What do you about another disease that mimics MS? or it's just in my head...that what the neurologist made me felt like i was making it up. Like yeah sure...like i if have some time to loose and drive up about 45minutes to see you, i have better things to go that ran the doctors for fun, because "NON' i've stop by the Dr for another 6weeks, i been off for 4 weeks before that. It's hard on my family because i had no income . What would it in my head> ahha.. sometimes i just dont understand medecine, that's why i couldnt go further my Paramedic formation, and the reason i stop in 2002, i saw a very tragic accident with 4 kids and a mom. Couldnt deal with it,
I'm from the great state of Oklahoma. (Go Sooners!!) It sounds to me like we need to roast your neuro too. I hate it when they tell you it's in your head. Like we can make things like this up. Not on my best day could I make up my symptoms.
There are a lot of diseases that do mimic MS. That's why it's so hard to diagnose. It's the process of elimination. Everything else has to be ruled out before they can say MS. It took 3 years for my diagnosis. It was a long wait.
You hang in there and no matter what we will be here for you. That's one thing about this group of people, they are more like a family and every one supports each other. I love them all.
I'll be praying for you,
Welcome, Denise! I'm sorry you're so frustrated at this point. So many of us have been there, done that.
I'm still without a diagnosis, as so many of us are. Read around the forum posts, and make yourself at home. We're a friendly group. Do as Quix suggests, and make up a timeline of symptoms, so we can help get things going for you.
Hang in there, and feel well!
I dont' know if you can help with this question. Is it possible that my symptoms were to early do detect on a MRI and didn't show any lesions on my MRI. !!! im just not convince that i have a Trocanteric Bursitis on my left hip and thigh, and the symptoms that i experience at the hosptial for almost 2 weeks, and came back after i got out Sept 5 2007.
Hi, Denise. I am feeling better and I will answer your questions as well as I can tonight. I do have some ideas. This is definitely NOT all in your head! I also do not think this is merely trochanteric bursitis. That sounds ridiculous! You are suffering and I hope we can help you.
Your English is excellent. Do you speak both languages?
I will be back later. Quix
I'm new on here to Denise and know exactly what you are going through. I have not yet been diagnosed and am so greatful that I found this forum. My neuro has been of no help to me. I am now in the process of trying to find a new one. You'll find great support and though it takes time, do read the other threads in here. There is an incredible amount of information. I'm still trying to read it all.
Hope you feel better soon
I am too tired now, but I will speak with you tomorrow. Quix
I agree with you, im tired too tonight, well every single day. My Dr called me on sept 29 , to meet him at the hospital to give me an Cortison injection for my hip. The next thing he told me, that all of my sign and symptoms that i wrote to him, well it looks like im doing an depression.... '' r u serious??'' because what i've been trough. Since i've had a miscarrige on July 2 /2007. After 6 weeks of my miscarriage , i got an severe infection ''Endometritis'' and then 3 days after i had the sign and symptoms that i've told you about in my first paragraph.. and then all my CT's and my Brain MRI was all negative, well he can't find what cause my pain,numbness,tingling,really im in pain, so he thinking maybe it's a ''Mental Ilness'' or a ''physical Ilness'', and then he told me that im doing a DEPRESSION and he made me feel that my hip pain was all in my head.!!!!!
I agree that im always tired, no energy ..blah blah etc...i cant name them all. Maybe im doing a depression and i just dont realized it.
I have another thing to tell you, he wanted me to put ice on my left hip and thigh for about 10 minutes every 4 hours. That's find with me ,but everytime i put ice, it hurts alot, jsut dosen't fell comfortable and then after like 3 hours or 4 after i putted ice, well my skin is still very cold, and i still have numbness too. Maybe it;s an Circulation problem that i have now.....
Im am really confuse, i just feel that my Dr thinks im inventing this pain in my hip.....
Hi Denise, welcome and I am sorry to hear of your miscarriage and suffering, and then having to deal with such a doctor. I can never understand it. I will tell you, that I went through a major Post Traumic Stress situation after going into labor prematurely and then a diabetic coma. What you are describing sounds nothing like being caused from stress even though you must be on overload with all you've had to deal with. (((cyber hugs))). I would strongly state at your next doctor visit, H*** yeah I'm depressed and upset, wouldn't you be! Ok, so you probably can't say it like that, but it would be nice wouldn't it.
It took me 4 1/2 years to be diagnosed with a combo of three mimics - Chronic Ebstein Barr virus, Diabetic neuropathy and stroke (thought to be caused by a hole in the heart). I have been continuously ill since my pregnancy.
Hang in there
I am sorry I forgot to come back and answer your questions. I have had 9 family members from 3 other states visiting this week. I have been so busy and so tired.
I cannot diagnose anything on line, but this is a Multiple Sclerosis forum. I will talk about what you have been through in the context of MS.
Your first symptoms happened after the miscarriage and during a severe infection. It is well known that when a pregnancy ends, there is a very large change in hormone levels, especially the estrogen level. This is one of the most frequent times when the first attack of multpile sclerosis will happen. Also, when you have an infection, your immune system becomes highly activated. Infections are another frequent stimulation for an attack of MS. So you had two simultaneous reasons for MS to show up. Thus, your symptoms of dizziness, numbness, tingling, itching, and electric shock could all be part of a first MS attack. It would be a very common presentation.
The awakening and feeling paralysis might have been an episode of a phenomenon called "Sleep Paralysis." This is very common and very frightening, but it is not serious. Or it might have been a problem with the medications or with early MS.
Your symptoms since you left the hospital are very characteristic of MS. You are having the black spot in your vision, and this is common in MS. The pain and numbness in your hip and leg would also fit with an ongoing attack of MS that is slowly improving. The severe fatigue and difficulty thinking is also very common in MS.
Depression could cause the fatigue and foggy head, but would not casue the pain, numbness, tingling and the weakness and the vision problems. From your story I am very suspicious that you may have MS.
Your doctors HAVE NOT ruled out MS. The CT scan is completely worthless in visualizing lesions from MS. The normal MRI does not rule out MS very early in the disease either. The lesions may be too small to be seen by the MRI. Also the MRI machine may be older and of low power. When they did the MRI scan did they inject you by IV with a contrast solution halfway through and then take some more images? The contrast material is necessary to see very NEW lesions. If they did not use the contrast they would not have seen lesions that had developed in the 6 weeks just prior to the MRI. So likely they would have missed your problem. Did they do an MRI of your spinal cord also?
On the US National MS Society internet site they state that 5% of people with confirmed MS have a "normal" MRI. That is a very high number! 1 in 20 people with MS will have a "normal-appearing" MRI. The reason for this is: People with MS often have very tiny lesions in their brains that are "invisible" to the MRI machine. Also, the lesions may be in the spinal cord. It is harder for the older MRIs to visualize the lesions in the spinal cord.
When they gave you Solumedrol by high dose for 5 days and you improved, this was very good evidence that they were treating an attack of MS. It is not proof, but it is good evidence. What you need now, is a Dr. who is willing to understand that one normal MRI (especially if it was done without contrast) does not rule out a neurologic disease. You need a spinal tap. This is also called a lumbar punture where they take a small amount of fluid out of your spinal canal. This will often show more evidence of MS. You need an MRI of your cervical (neck) spine and an MRI of your thoracic (chest) spine. Because of your vision problems you need a test called a Visual Evoked Potential. This tests for damage to the optic nerve. This last test is very important.
I am sorry the Dr.s there do not seem willing to look further. Is there any way you can travel to a larger medical center to see an MS specialist?
An idea is for us to give you internet links to some information to take to your doctor to show him that you need more testing. Your risk of having MS is higher because of your uncle's MS and becasue of where you live.
Sometimes male doctors disregard female patients with problems they can't see. It is arrogant or ignorant to say someone is just depressed. Could you take someone with you to insist to the doctor that, although you may be upset or depressed from the miscarriage and the infection, these symptoms are VERY REAL and you need them to finish looking for MS? The MRI is only a part of the diagnostic process. More important is the patient's history and physical exam.
I hope you see this, and again I am very sorry for making you wait so long. We have several people on this forum from Canada and I hope they can help you maneuver through the medical system to get the tests and the diagnosis you need. I know how frightening your symptoms are.
I hope you respond, Quix
I am new here too, and you could be describing almost exactly what I am going through. I just had a hyst. in Aug. and since then my symptoms have progressively gotten worse. I have the numbness, spots in the eyes, foggy feeling and I had a drop attack this past summer. It is amazing that your drs don't listen to you. I hope you get some answers soon.
Thanks for responding back to me!! hah i was looking every dayhaha. Ok When i went for me MRI on Sept 21 /07 , They just took images of my brain, and they didn't put an injection, because the technician told that the image was clear enough. After i was done, i asked the tech, how come you didn't chek my hip??? 'cause i thought he need to chek it out since it was numbn and stuff like that. And he said he was following the consultation, a MRI of the brain only. Me i thought that they would took everything. He said to me that the Brain control everything, so they will see if there's a problem with my hip, if they was something wrong, they would see it in my brain.
So i was kinda dissapointed when they didn't take my neck and spine, but the Dr who did the consultation , only put ''Head'' to be check on the MRI.
LIke you said in your response....could it really be MS even if they didn't find any lesions in my brain?? is it to early to detect?? or is it possible to have the lesions in the spine instead??
For the solumdrol that they gave me....it helped me for everything, but except for my left hip , today it's still numb and painfull. I still see that ''BLACK SPOT'' in my left eye...i only got that after the treatment. Is that normal that i see that spot all the time????
The reason my Dr saying that im going down to a DEPRESSION is i all a lot of S&S, but im still not at 100% that im doing a depression, but I WANNA KNOW WHAT HAPPEN TO THE SYMPTOMS I HAD AT THE HOSPITAL ????? and he can't respond to me.
My Dr really dosent suspect MS because all my tests are NEGATIVE and i only had 1 ATTACK...to suspect MS , you need to have 2 ATTACKS in a month. ANd i guess i didn't have that, that's why we dosent wanna go further, His Dx is ''DEPRESSION"" and for my hip its '' TROCHANTRIC BURSITIS"... he gave me a shot of cortisone Sept 30, for 3 days i was in pain!!!! and stiff...but now it's still numb and well painfull now, but it depends sometimes.
2 nights ago, i was on my back sleeping and i felt something bizzarre, i was breathing and it was really thigh around the thoracic area and my chest to....i felt that i was stuck, my neck was stiff and had the terrible headache..... i was thinking i was having a panic attack.....but i was fine before i got to bed. It was jsut a scary feeling.
Anyways, HOw can i say to DR to chek further even if he suspect nothing about MS, before hes saying it's all in my head...im inventing my pain...and also i've at is office twice to see him. He say their's no MS and the MRI proved it. SO what to do??? i didnt; had a attack yet...and when will it be??ahh it's just unpredictable. I'ts my body and im not saying that i want MS, im just concern about the symptoms that i experience at the hospital, and the 'NUMBNESS", tingling,burning,etc...
Do you have any information on a site or something that i could bring to my DR??? or suggestions??
If they are something, i can give you my email address!
Thanks Alot Quix, you must be very busy on this forum haha, but im glad ive met you!
Hope to get some answers soon :)
Oct 9- Ok i still see those black spots in my vision, like everywhere i look, and also i have like little sparkles sometimes, it freaks me out!!! Is this ok?? or should i go see my eye Dr with this??? or just leave it like that??? Is this normal in MS to have floaters and sparkles??
October 14- at night time, it just started like that. First i had a hard time to fall asleep like usuall, but this keep me awake for a while. My 2 arms and hands started to feel very weird..i never had that sensation before. It kinda hard to explain, ummm how can i say this?....ok It felt that my muscles was cramping in my arms and hands,,,,also my 2 pinkys are like numb. I try to change position, and it just kept being there....it was really painfull my god.......and then i finally went asleep because i took a sleeping pill.
The next morning, it was still there, all day my arms felt weak and really heavy. It feels like if someone is squeezing my arms and it;s a little painful, and really annoying. My hands are also weak..and my pinkys are feeling numb.
Im just concern about this and my symptoms.... and im afraid to go see the Dr ,because they dont think it's a neurological disease...... Well all i can say... Im not makin this up...Im jsut getting frustrated with all this. I think it;s kinda normal.
Quix... Hope you feel better you too!! :) Hope you read this xo
I'm sorry that your doctor thinks this is all in your head. I think that's when I would start looking for a new doctor. Also, I think you need to go to your eye doctor for the eye problems. You may have optical neuritis (ON). That does go along with MS.
Take care honey and I hope things will get better for you real soon.
I'll be praying,
Hi! Quix , how are you feeling?? i was juste wondering how you were? Well me it didn't change really much, i have new symptoms that i wrote, and it still on going. Tomorow im going to see my Dr for another Cortison Injection in my left thigh, I just hope it will relief my pain. But i wanna ask for another opinion but im kinda of afraid to not to be listen seriously. I know it's been almost 2 months im out of the hospital but im not ok....there is something wrong with my body....
Well hope you can help with some of your opinions.....Take Care Dear
Hi., I just went yesterday for my second Cortison Injection Oct 19, after the Dr told me , i have to call him in 2 weeks to let him know if it help or not...and then we will give me another Shot and the last one. He also told me if it dosent do anything , well we are gonna have to look further. Geesss i;ve been waiting for that for 2 months now!!!! ahha.
Oct 20- I woke up around 11h am and i opened my eyes and only my left eye was BLURRY AND FOGGY..... and closed my eyes several time and didn't change. It lasted for about 20 minutes. IM GETTING A LITTLE SCARED HERE.... IS THIS NORMAL??? PLEASE I WHAT SOMEONE TO RESPOND !! :)
Hey Denise, sorry you are having a rough go. You need to go to an eye doctor and get that checked out. I too am having eye trouble and have had for 5 years. The one problem is only seen in full blown diabetics which I don't have and the other symptoms of blurred vision and eye pain,floaters and flashes of light which they say have nothing to do with the other problem, have not yet been diagnosed. I'm going to the eye specialist in Nov. for my 6 month check up and am going to ask for them to check for Optic Neuritis. I know how scary this can be when it affects your eyes. My eye specialist said if my (diabetic like eye trouble) comes back again I may eventually go blind and yet they can't tell me why it is happening. Make an appointment and get it checked out. It may not be anything too serious and if it is there may be medication for you but you won't know unless you go.
My prayers are with you