Is it possible to have early onset of MS and have a negative MRI?
About 4 months ago, when my husband and I went to Las Vegas for a weekend getaway, I began feeling tingling in my hands and dropping things. It lasted for a few days. I blew it off as nothing. Then, a month ago I had two separate incidents where I couldn't walk on my right leg (1st lasting for 4 hours, the second for 9 hours). For the past month, I have experienced come and go symptoms of numbing, tingling, blurred vision, headaches, motor and cognitive difficulties. What has remained constant for the past month has been fatigue, leaving me so tired and achy all over that I feel like I have the flu. When I went to the ER after my 2nd episode of inability to use my right leg, they did a full MRI (brain and spinal) and blood work. Every test came back normal. Since the ER visit, I have seen two general neurologists that have concluded it is "all in my head/ psychosomatic". Before this last episode, I was healthy and active, rarely sick. I have minor stress and felt very happy and satisfied prior to all of these symptoms. I would like to think it was just a flu or virus, but I cannot ignore the fact that my Dad, his Aunt and two cousins all have MS. Is it possible that this is the beginning of MS and it is just not showing on the MRI? I feel very frustrated and hope to find out what is causing all these strange symptoms. Where do I go from here if the MRI is negative? Thanks for your help and advice!
Doctors passing these type of symptoms off as psychosomatic are not unusual, unfortunately. Especially for women.
Did these neuros suggest any sort of counseling since they say it is in your head? A lot of folks here have gone and seen a psychiatrist just to get this off the table. You might consider asking for the referral to get the proof it's not just a figment of your imagination.
Then you can get back to looking for answers. It is your body and you know if you are having problems. From here I would go looking for an MS Neurologist - one who specializes in the disease and understand the nuances of diagnosis that regular neuros often don't get.
Don't be surprised if this takes a while - we have people here who have had a long time pass before getting answers. In the meantime feel free to come around here to vent, ask questions or share more of your experiences.
Thank you so much for you detailed response! The link and suggestions you shared are very helpful. The last neurologist I went to suggested I see a psychiatrist and I agreed to see one even though I know it is not in my head. I really wish it was all in my head because then I could make the symptoms go away! At this time, I am just taking one day at a time and celebrate each day that I feel almost normal.
Seeing a psychotherapist will get that off the table, and if nothing else reassure you it is NOT all in your head. Sometimes, we like to think that ourselves. It's easier. ;-)
My brain MRI came up negative too. It took me a little time to realize (because I wanted answers now) that is a very good thing. In the meantime, my symptoms are stabilizing and fading away. And that too, is a very good thing.
Sometimes that is one way they watch and wait. It can be viral (as I was originally suspected to have a virus). The IDS I've been seeing says viral episodes can last for weeks to months, but rarely longer.
In the meantime, it might be helpful to start logging your symptoms. Create a spreadsheet and start tracking them, their intensity, your energy level, body temp, stress level, etc. There might be some patterns that emerge that could be helpful in pinning it down.
The more specific we are with our symptoms, the more helpful it is for the doc to decide on a direction to pursue. Sometimes they evolve and other things get added in. Take my situation for example, I've been running a chronic low grade fever. This is not characteristic of MS. It's been burning for about 3 to 5 years in the background, all the while making me think I was having those perimenopausal hormone fluctuations. But I'm not menopausal, so not old enough for hot flashes, which is what I was calling them. I found out by accident this summer that it wasn't a hot flash, it was a fever all along.
Despite this, we all went off chasing infectious disease with MS as a possibility on the back burner, then came the negative MRI along with a couple of other tests which indicate possible lesions in the brain stem and auditory nerves. All blood tests have been normal so far. I can't tell you everything that's been tested for. A lot!
Then just a couple of weeks ago, my wrist became swollen, stiff, hot and painful. Hello! Then it was discovered a couple of heart valves have degenerated in recent years. So now we're off chasing autoimmune diseases like lupus and it's variants.
And now, it's been discovered there is a string of hard lymph nodes in the back of my neck. So I'm sure if the rheumatology tests show nothing, there might be some investigation with those lymph nodes to follow if not sooner.
So yes, it could be MS. But if you pay attention to other things happening, it could be something else as well. Just remember, when you visit a specialist, everything gets filtered through their particular lens. Sometimes it will lead you somewhere, and sometimes it will lead to dead ends. The big problem with neuro stuff is, they can't just go in and biopsy. It's too risky unless there is a very good reason for it. They like to let these things unfold in their own time and simply track progress.
The most important thing I've learned on this long, expensive, drawn out journey is, pay attention to everything in your body. There might be signs of other things getting overlooked while the neuro stuff is in the foreground. Let your PCP get involved and don't overly rely on the specialists to make the decisions. They all have a varied background and training, and one might catch something the others have missed.
Remember your health history. Have there been other times that odd things have popped up that couldn't be explained? What were they? How long did they last? Was there a cluster of other symptoms at the same time?
Like you, my history is quite suggestive of MS. But there are signs it is something else that shows up the same way. The list of possibilities is long, and patience is needed while the docs sort through the testing process trying to discover what exactly it is. I went through much stress and anxiety before finally reaching this point of zen. It's easier right now because the symptoms are fading into the background. But when they were taking over my life, I wanted treated NOW. I wanted answers NOW. It was very frustrating to have to wait while it looked like things were going downhill very quickly. I thought I was going to be in really bad shape before they figured it out. Thankfully, that hasn't happened.
After writing a book . . . I guess my main point is, try to have patience, but don't give up looking for answers. They have to rule out a lot of disease before they can diagnose something like MS, especially if the MRI is clean. It's hard, especially if you're in a stage where it looks like some disease is active, progressive and spreading rapidly. But if you get all of that testing out of the way now while you're in a mild phase, you will be in good territory if and when a big episode strikes.
You're more than welcome, lindlk. If I can save anyone the terror I went through, I'd be happy to write another book. It sounds like you have a good start on finding out what the problem is. Don't give up. If nothing else, you have contacts in the medical field who are familiar with your story and history. If anything big goes wrong, they'll have a start and will be able to speed it up if needed.
I hope you find your answers soon. If a neuro wants to take the angle it's all in your head, it might be a good idea to find a different one. Fired! LOL
As a side note, my GP wants me to contact him first next time something significant happens. He seems to want to manage the ping pong game between specialists. I'm okay with that. I prefer it that way myself. So whenever something new comes up, he's the first one getting called from now on.
I have been experienceing lots of ms symptoms over the last 2 1/2 years. I had a negative mri and i have been fobbed off by my doctor saying i have cfs. I went to a support group last night and i know i do not have cfs as i am nothing like them (symptom wise) how can i get someone to listen to me or more tests, i have lost my life through this, i can't play with my children anymore as my leg wont do what it is suppose to and i have pretty much constant spacisity.
Please can someone help me, i am so fed up i dont know what to do
A GP was described to me as "the one who conducts the orchestra".....when I questioned even having one! (I don't)
YES you can have a negative MRI.............lesions even disappear as they attempt to heal themselves.
You've gotten some excellent advice from some of our more learned forum people! Keep a timeline of your symptoms for sure. There is an excellent book out and I will get back to you with it...........it will help you recognize some of your s/s.
It may take a long time to Dx, so have patience but hang in there and we truly hope you do not have it but sounds like you have some experience being around it which will help.
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