Welcome to our forum! You've given us a very thoughtful and experienced view of things a lot of us are grappling with. I appreciate you letting us know what you went throught with a short-sighted and far too cautious (or cowardly) neuro. We have discussed often the very real possibility of having clinically full-blown MS and of the MRI being "normal." I have written up the ways in which this happens several times. It's hard to accept that someone with multiple and enhancing lesions would be denied the offer of treatment. EP's are negative, all together, about a third of the time.
Would you join us? Are you interested in posting frequently (when there's something you want to say?) If you are, we have an an ongoing thread called, "What it took for a Diagnosis of MS," about halfway down on the page. I would really appreciate it if you would add your story, even if you cut and paste your post above,(it is wonderful!). I want there to be a whole long line of stories to demonstrate how the process of diagnosis proceeds differently for all, but how we are suffered when are bodies were ill and we didn't know what it was.
I am the local semi-medical person here, being a retired pediatrician with MS. And we're trying to build a place where the entire MS experience can be shown and help out others. So many here are still in la-la (limbo) land with a diagnosis. We need to encourage people who are caught with neurologists who are either defective, delayed, dimwitted, dismissive, dense or disdainful, that moving on to someone with a fresh view is often the right course.
You stated the conundrum perfectly about wanting and needing the diagnosis, whatever it is, to move on and to be able to deal with it. I KNEW I had MS about three months before the Dx came in. When the new MS neuro said the words I was almost jubilant. It's not that I wanted MS. But I did already have something that was destroying my ability to move and live normally. I needed that answer like I needed air itself. Better a villain that is known and named than facing sometthing unknown and unnamed.
Your view about the effects of pregnancy are right on. That is exactly what they are finding.
I really hope you stick around. Quix
ps. I really hope you add you story to the "diagnosis thread" even if you don't want to be a part here. :(
I was diagnosed with MS 12 years ago. It is not unheard of to actually have MS and have NO lesions appear on MRI. BUT...in time, if you indeed DO have MS, the lesions will make themselves known. I still know that there are some people diagnosed with MS that have never had lesions.
Of course, all of us hope that you do NOT have MS. MS can be a very difficult disease to dx, since it can mimic so many other diseases or even a combinatiion of disease...Diabetes, Firbromyalgia, Chronic Fatigue Syndrome, Vitamin B-12 deficiencies, Peripheral Neuropathy and the list goes on.
I know what it's like to feel helpless while waiting for a diagnosis of SOMETHING. You begin to doubt yourself, you wonder if you are crazy, you worry that your doctor thinks you are a hypochondriac...I've been there. Despite 7 highlighted lesions in my brain and one in my spinal cord, I had a Neuro that would not diagnose MS because my evoked potentials came back normal. I was stuck in laa-laa land for many years. All I wanted was help. If I did indeed had MS, I wanted to begin treatment to slow it's progression. It wasn't that I WANTED to have MS. I consequently told the Neuro good-bye and went to a teaching hospital in Virginia.
I finally submitted to a spinal tap, which showed the typical banding seen in patients with inflammation of the Central Nervous System. Put all the information and symptoms together after many years of complaints and badda bing...I was finally diagnosed with MS and put on Avonex. Happy? Yes, in the sense that I finally had a diagnosis, which was a disease that could be treated; if only with expectations that were limited. But happy to have MS...NO!
It's so hard to be between the symptoms and the diagnosis. Sometimes it can be a long wait. Now I look at things differently than I did before...if I really didn't have MS, would it have been wise to treat me for a disease I only "thought" I had? But in today's medical world, I believe that Neurologists err on the side of caution. If it looks like a duck and acts like a duck, treat it as a duck. I believe that most doctor's feel that it is better to start you on treatment for MS and it's flair-ups, than to not treat you at all. As is usually the case, the lesions from MS will eventually show up.... All the symptoms finally fit. It's the waiting that can be the hardest thing about dealing with MS.
Just as a matter of the symptoms during pregnancy...MS symptoms seem to abate and return about 6 months after delivery. It seems that hormones present
during pregnancy and the immune system changes, (that allows the foreign "being" to develop without the mother's body attacking the baby AS a foreign invader or infection) prevents or stops MS symptoms in it's tracks. If only for a little while. That is 'one' area the researchers are most interested in.
Heather
Hi Quix,
Thanks for your Reply,
So glad you are feeling better. You are very loved and apreciated on this Forum. So nice to have you back.
I have my Neuro appt. on Tuesday. and I can't wait. I feel like I'm going down hill. I had all kinds of blood tests taken the recent ones were RPR and another ANA. I also Ended up back in the ER after I blacked out but they just did blood test and an EKG and said go to the Neuro appt. and tell him what happened.
I have been sick lately, with dehydrating, can't eat or drink anything, I guess it's almost like the flu symptoms but not coughing.
The numbness in my feet is still there but the pain has subsided in my legs for now.
But For some reason I just don't feel right.
Once again thanks agin for your reply and I'm glar your feeling better.
I will post again after my apointment on th 18th.
Sheri.
Just bumpting this up so you see your (late) answer. Q
Hi, Sheri, Sheeeesh! I promised you almost a week ago that I'd get to your post. So sorry. Of course, I try to always say that no one online can diagnose anything and I'm no different. But, I can discuss what you've gone through in terms of MS and how it presents and what is needed for the proper work up.
The sudden change in your migraine disease is a common occurence in MS from what I've read. The eye muscle spasm which you describe while driving is the kind of thing that is fairly frequently seen with presentation of MS. I've read about that kind of eye crossing spasm, or eye(s) pulling to the side, of jaws locking shut, of "blepharospasm (where the eyelids spasm shut and cannot be opened). So it certainly could be a presenting condtion. Apparently someone lese thought so, too.
All headache types are more common in MS, probably because of the diffuse dysfunction within the brain tissue - related to the cognitive slowing, the fatigue, the dizziness. Also, because of weakness of the muscles, very often the back and neck become painful secondarily from changes in posture and gait. This spasm can pull on the neck and cause a muscle tension-type pain. And migrain disease can pick up in activity and even change it's course (headaches may be different from what one is used to)
The next incident does sound like it appeared and progressed much like a stroke or TIA, but that presentation has also been described in MS. And it always involves the need to distinguish small mini strokes from a demyelinating disease. I am assuming they are working you up for all those clotting disorders that incude Hughes Syndrome - which we have discussed recently. If you haven't had testing for things that cause "sticky blood," then you need to have this done IMMEDIATELY!
When you talk to your neurologist you need to have a pretty clear description of what symptoms happened - which one's happened together, how long they lasted or are still lasting. You need to note which ones where only momentary. Be able to describe the fatigue in terms of how it is different from other times you've been really, really tired (I know, there's no comparison). Make sure the doc understands what kind of person and activity level you maintain before all this new stuff started happening.
Do you feel your brain and thinking is not right? Are you describing problems with Word Recall or talking along and just saying the wrong thing?
Has your gait (walking) changed? Are you tripping over slight irregularities in the ground (even grout lines according to Lynn)? Do you miss doorways and hit the door jams or walk down a hallway - being glad there are walls on both sides to careen off of? If you get up at night and walk in the dark, any increased problems navigating?
You need to tell you doctor immediately about the eye pain (I'm so sorry this is 6 days late!!) You need to be checked for Optic Neuritis, (eye pain, pain with eye movement, blurring of the vision or decreased acuity, loss of color intensity).
The pain your feet sounds like nerve pain and it takes a different kind of med to relieve it. The narcotics aren't as helpful as they are in other types of pain.
Please do write up a Timeline of your symptoms with dates, any lab tests with results, any imaging - like the CT scan. Double space all items and use short phrases. Be descriptive of the symptoms. Saying "My hand is weak," doesn't describe much, "My hand is weak. I drop things that aren't that heavy and can't tell when I have a good grip." I better. or.."My right leg feels heavy. Walking a short distance tires me and after half a block I can't lift it up to the curb." Be sure to describe how long specific symptoms have lasted.
By writing up a timeline, you will have a much better grasp on the whole ordeal and be better able to answer questions. It helps you sound more credible and also is a great reminder when the neuro says, "So, what's been going on?" and your mind goes blank. It's good to give the timeline to the front desk when you check in for the neuro appointment. That way, if he wants he can read it (skim it) before he/she sees you. That's why you don't want long paragraphs. Easy to skim read is the key.
The symptoms you've given us sound very much like MS, but there are also things that mimic MS. I'm glad your migraines are under control. Migraine disease can cause lesions in the white matter of the brain. But if the migraines are under control and the symptoms are increasing, that is good info for the neurologist to have. You are going to need:
A thorough Neurologic exam. This should take a good 30 minutes. Along with this should be a thorough history.
MRIs of the Brain, Cervical spine, and Thoracic spine. These need to be done with and without contrast.
Visual Evoked Potential - I think this should be scheduled ASAP. or at least be seen by an eye doctor.
Blood tests to rule out things that look like MS, but aren't.
Other tests depending on the results of the above.
We can help answer questions along the way. I hope this has helped, even though late.
Quix
Well I heard from mt Dr. yesterday, he is going to try to make me an appoinment for the MRI before my Neuro appt. so I can take the results to the appt.
I had another night of laying on the couch in pain and numbness in my feet. Not feeling that much better this morning.But My arm is better.
Last night I had some weird feelings in my toes, it felt like what I can only descibe as kind of electrical shock. It didn't last that long.
I'm thinking that I might go to the ER today if it gets any worse because this is driving me crazy!
I don't know what else to do. I'm taking Vicodin but it's not working.
Anyone have any suggestions??
Thanks
Sheri
Hi and thanks for your replys,
Most of yesterday I spent on the couch with my legs hurting and my feet numb. Also my right arm was not in working order. When I did get off the couch I had to use a cane and use my left hand to work it so I wasn't very coordinated with it as I am right handed.
This morning is better I still have numbness in my feet and my legs don't hurt that bad. My arm is almost back to normal.
Burban-c - I called my Dr. this morning and I am waiting for him to call me back, He usually don't call me until the day is over unless I state it is an emergency. When he calls back I'm going to see if he can set me up with the MRI and get all the ground work started for the neuro.
Granny - Thanks for the encouragement. I know waiting is hard. Two weeks seems to be an eternity right now for me, I just want to get it over with and get on with my life either way. Thanks for the tip on writing things down and other moments that might help the Neuro, I guess if I really think about it there might be more to it. Also thanks for the prayer. My thoughts and prayers are with you and everyone.
Quix - It will be nice to hear from you, so many value you advice and opinions. I've read alot about how you've helped others. I'm anxious to hear your comments. Hope you feel better soon.
Thanks all,
Sheri
Have you had an MRI of the brain with contrast yet? If not, is it possible for your physician to order one prior to you seening the Neurologist? It may save you a return trip or help to speed up the process. The Neuro will most likely send you for one, it's almost standard protocol for the symptoms that you described! Just a thought!
~Burban-c
It sounds alot like MS to me but so do alot of other symptoms that people have. I do hope that everything turns out good for you. MS is not the end of the world, although we think so sometimes. You have to hang in there and be strong. Be a fighter. Don't let this disease win. I kow that I'm not. I figure between me and the Lords Army I have a pretty good chance of winning. Sometimes it wins the battle but I won't let it win the war.
Keep the faith and please write everything down in a time-line to give the neuro. Start from that moment on the freeway up until now. Also, think back, now that you know something is wrong, are there other moments in your past that you might contribute to this? Just a thought.
I'll be praying,
Carol
I have several comments which will have to wait for tomorrow. My eyes are going wonky. Quix
Not sure where all the question are but here is a link I found with 10 questions to ask the Dr.
Maybe Karzme could find the other link she was talking about.
http://www.webmd.com/multiple-sclerosis/10-important-questions-about-multiple-sclerosis
Sheri
Where at on webmd to find questions to ask doc? I went under MS... can't seem to find it right now.. maybe I'll look later. Thanks
Roxanne
Hi
Thanks for the reply,
When I said crossed eyes I guess I meant double vision cause I definantly was seeing two of everything. I was thankful I pulled into the right driveway.
I will look at the Wedmd site and check out the 20 questions.
Thanks again.
Sheri
It definitely sounds like MS. I have migraines alot too. Mine started with double vision, yours sounds like it started with cross eyes. Keep us posted on what they say. I would suggest going to webmd site and look under MS. They have 20 questions to ask your dr. I took it with me. I think it would help. Karina