About 8 years ago I started experiencing tingling in hands and feet, numbness and episodes of extreme fatigue that would clear up and then return every so many months. Got sent on a doctor hopping trip from one specialist to another. A neurologist suspected MS and suggested to watch the symptoms for awhile. I just gave up and have been living with the symptoms.
This last year it became worse. I started having severe eye pain that would last an entire day. Episodes of extreme fatigue for no reason. A few times I noticed in either eye I would get a small bright disc shape that would appear and move with my eye. It was more annoying than anything else. I told my general practioner and he said it was probably my sinuses acting up.
Then in March I was hit was the worse fatigue ever. Thought I was coming down with a virus. Two days into it I woke up with double vision in my left eye, blurriness and loss of color. I thought well, it's my sinuses. Days latter when it did not clear up from allergy medication, I went to my doctor. This was now 9 days into it. My balance was terrible. I couldn't walk a straight line. My left leg was very weak and felt numb.
He thought I had a stroke so MRI was ordered and was sent to a neurologist who told me it was an episode of optic neuritis. The neurologist ordered a spinal tap. In the meantime, my vision had returned to normal and all other symptoms went away as well.
Yesterday I saw this neurologist for results of the MRI and Spinal tap. He had a copy of my MRI and stated he thought my MRI was clean whereas the Radiologist states "....focused of increased T2 Flair signal within the right ventral periventricular white matter axial position -10.69. These are non-specific but are compatible with multiple sclerosis. Neither of these lesions are associated with mass effect....."
The radiologist also concluded in the report that...."Two foci of white matter signal abnormality, one of which is located with the right splenium of corpus callosum, that are nonspecific but compatable with multiple sclerosis. No evidence of demyelination at this time...."
This neurologist stated he did not see anything wrong with my MRI and that my spinal tap came back fine. I asked him what was wrong and he felt I am having occular migraines without the headache and just to give him a call if it happens again and he'll put me on migraine medication. Then he walked out the door!
Who do I believe? I am at a loss here. I am a professional artist and instructor, right now I was supposed to be teaching a seminar in Paris but had to cancel. My vision is very important to my career. I don't know what to do or who to believe?
If I were in your position I would get my GP to get me an appointment with a Neuro Othalmologist. They are Neurologist who Specialize in eyes. From my understanding and I would also find another Neurologist.
What does this Neurologist specialize in? I went to a Neurologist who was a headache Specialist and she ignore my MRI, Evoke Potential test and the Neurologist who referred me who thought it had to be MS. Many Neurologist know little about MS. She just focused on headaches and thought I was mental.
I would get the CD of the MRI and LP report to keep with you and take to any other Doctors.
It may still take awhile to get a diagnosis being followed over time by a MS Specialist. No test rules MS in or out they go by the MCDonald Criteria which you can see in the Health Pages top right under discussion.
Thank you so much for your reply. I just called my GP and made an appointment with him tomorrow per your suggestion. Basically the neurologist I saw yesterday did treat me like I was a mental case which was of course upsetting. I do have the CD of the MRI and just had the Lumbar Puncture results faxed to my GP.
I just did a internet check on this neurologist and he didn't get rave reviews. So I guess I'm back to square one now. I will read the MCDonal Criteria in the meantime.
You know something is wrong with your body, listen to your inner voice and be assertive. :)
I was told ALL my tests came back normal, I hoped that I had just a virus but when double vision reared it's ugly head I couldn't ignore any longer. I also researched my Neuro and he has many written articles on strokes and head trauma. Nothing about MS or demyelination which explained his treatment of me. He thought I had a stroke, first question out of his mouth was "Did you hit your head recently?" My PCP's first question, "Did have a virus that preceded this?" Nope and Nope.
When I was left with another flare/attack/what have you without a plan of action from my Neuro, I decided this wasn't the doctor for me. I pulled all my tests and started going over them. Not so normal. There are many inconsistencies that I have questions on and mine aren't blaring in my face like yours are!
You are doing the right thing in following up. Take care of you. :)
Thank you Sidesteps for you reply. I appreciate it:-)
I just called and talked to the MRI place and asked if this was typical for a neurologist to disregard the findings of the doctor who reads MRI's. They said no.
I would like to see the results of my Lumbar Puncture too and not take this guys word for it. I'm sure it's fine but to be on the safe side.
I am seeing my GP tomorrow not just for this reason but the day before the puncture my right eye was so blurry I was coming around a corner and fell hurting my left arm. STill can't move it. So I'll take care of both issues. The problem is I live out in the middle of nowhere and this neurologist was recommended by my GP!
Where I had the MRI done I told the nurse what took place at the neurologist's yesterday and asked for a recommendation. She said she would talk to the doctor so I am hopeful.
I can't dismiss what is happening and just call if it happens again. I don't want it to happen again.
I have read many threads on this forum and realize the frustration of so many members so I don't feel so alone.
Thank you for your time and your response. Take care:-)
I can't urge you enough to ask for areferral to a doctor who specializes in MS. You may need to take the name of a clinic with you and specifically ask for that one. There are so many nuances to this disease, and the general neuros look at all types of diseases, not just MS.
You may have to drive a distance, but it is usally well worth the effort and gas.
Plus I would not return to a doctor who made me feel less than in charge of my own body and medical care.
Stick with it, and get a referral to a new neuro, preferably an MS specialist. You have more than enough reason to believe something is wrong and you deserve treatment. (the latter has been my mantra as of late, it seems!)
Hi Josete ! I'll also add my welcome to the others.
Your symptoms and their chronology sound similar to mine minus the diagnosed ON but still with eye issues. I was told I had ocular migraines. Went to see a neuro who specialized in headaches. He looked at my MRI films and told me as many others had, "No these lesions are too round to be MS...it's headaches". WRONG
I now have evidence of ON episodes when seen by a competent neuro-ophthalmologist.
If I look left and step with my left foot I fall. I have fatigue and pain issues.
As for the LP being negative, The LP is used only when a diagnosed can't be reached. If it is positive that is great and helps with the diagnosis. If it's negative it has no significance as you can have a negative LP and still have MS...I do.
It sounds like you are doing the right things and being an advocate for yourself. Please do not hesitate to ask all the questions you want.
Don't forget migraines. In reality, it's very hard to get an MS diagnosis. In my experience, they only believe the MRIs anymore. I've never heard of one dismissing a diagnosis that was so clear on an MRI.
What's worse is to have MS and not have lesions on your MRI at all. There are plenty out there in that category.
I am one, that has *migraines* causing a dozen and a half neuro issues over the last year that have come on strong, waxed and waned, then disappeared. Had three flare ups this last year - all written off as migraines. All of those neuro sx could be explained by migraines, but the bowel bladder issues cannot. So they latest is to lump everything in the migraine category and then shrug the shoulders about the bowel and bladder issues.
Very good advice here. Find a neuro-opth for a thorough exam, find a new neuro, most preferably an MS doc. If there are dawson's fingers on your MRI, and a radiologist has said your MRI is consistent with specifically MS, you won't have any trouble getting in to see an MS doc and getting started with treatment if they agree.
It is possible the radiologist was inexperienced, but every doc I've seen relies heavily on the radiologist reports. Many neuros see things radiologists have missed. But usually, the scenario is the opposite of what has happened with yours.
Best of luck to you. ON oftentimes heals. I've had at least two ON-like episodes (first I didn't even know about - the optometrist picked it up) and the second was this last winter. My eyes blur every now and then, usually one side at a time, and not so severe I can't read or function. In fact, for many years I never thought much of it. My vision is perfectly normal unless I get hot, exercise, take a warm shower, or am fatigued.
This last time, which lasted a few months with reduced acuity both eyes and reduced color vision in one eye, I knew something was wrong. But within a month after starting on a high dose of oral steroids (the wrong treatment for ON), my acuity was almost completely cleared, the color vision was completely cleared. Two months later, the acuity was back to normal in both eyes. This surprised the neuro-opth. I don't think she expected the acuity in my left eye to get better. But it did. Now I have better than normal vision again.
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