Quix has been going through a round of steroids and has not been feeling well. She is doing her best to try and get back on the forum to answer questions. Please hang in there....
I wish I had the ability to answer everything that is posted on the forum, but I just do not have the "doctor background" that Quix has and sometimes I feel helpless, even though I am also someone that lives with MS.
You are going through alot. It sounds like you have a doctor that is trying to stay on top of things as they occur. Whether it will result in a diagnosis, I do not know. That's the problem. None of us know.
Hang in there until Quix is feeling better. I am sure she can give you some insight.
Happy New Year!
thanks heather for responding to me, I'll be patient, i promise, lol.
Hi ELT, welcome to this forum. I see that alot quite alot of your symptoms...I have had since I was younger. I also had the idiopathic seizure disorder, on and off for many years.
Now I have alot more. I have not yet been Dx...went for many test...nothing conclusive...still I'm waiting for more tests. Hope you feel better soon.
My pains and symptoms are usually here, but I do have some weeks where it is tolerable. Take care and talk to you again.
Hi, there! My, you are about the most patient person I've ever met. I am so sorry for not getting to you! I know you have posted here in the past also, I remember your name. You are so welcome here and I hope you don't take my habitual tardiness as typical of our group.
You clearly are going through a h*llish time. Your list of symptoms is very descriptive and I can comment on quite a bit of it, but to really understand it we need to know the time course all of it occurred during. what began when, when were the MRI and EP's done, did things ever go away, completely or incompletely. Many neuro diseases, and yours sounds very neurological, show a typical pattern of symptom appearance and/or improvement. This is especially true of MS.
Of course, I will begin by saying that no one can diagnose anything online and I am no different. But, you are thinking about your problems and how/if the fit with MS or you wouldn't be posting here. Well...unless you just wanted our sterling company!
I think I will discuss the things in the order you mentioned them. The first is your age. We have had many people here told that MS is not likely because of their advanced age (usually over 40). These are words from someone who knows little about MS. In the "old days" before the 1980's there was an upper limit of age 50 in diagnosing MS, but that was dropped and current recomendations are NOT to regard age in making the diagnosis. People are being dx'd now who have had the onset of their diesease well into their 60's or early 70's.
I supect your seizure disorder is entirely unrelated to the neurological problems you are having. Idiopathic seizures are common in the general population and just as common (but NOT more so) in people with MS.
Your visual symptoms are classic, textbook discriptions of inflammation of the optic nerve called Optic Neuritis. It is one of the most common presentations and problems in MS. When was the visual evoked potential with regard to the worst of the visual symptoms?
We get a lot of people reporting tinnitus - a sound heard by the person within the ear or head. The nerve controlling hearing is the 8th cranial nerve. It certainly can be damaged in MS as can any of the 12 cranial nerves. But, also tinnitus is a common problem in the general population.
Your muscle problems are varied and include things that we see a lot of on the forum. The weakness and stiffness may indicate real muscle weakness and spasticity. This should be obvious on a good neuro exam. When was your last exam? Did it seem detailed and thorough? How are your tendon reflexes? (like when they tap your knee). Muscle spasms are sustained contractions of major muscle groups - like a "charlie horse." Twitches and fasciculations are tiny contractions of smaller muscle bundles and don't cause any movement of a limb. Both of these are common in many neuro disorders.
Is your foot drop permanent? CAN you bring the toes of that foot up toward your leg? Do you stumble because of it? If so, has your doctor sent you to physical therapy to have your gait evaluated and possibly get a brace to hold your toes up?
Knee lock - what do you mean by this?
You really run the gamut of paresthesias. And all of them can be seen in MS and in other disorders like B12 deficiency or Lyme disease. AND, itching is a known type of paresthesia seen in MS, as well as the other things. I think the weirdest and one of the most common is the sensation of internal vibration. The doctors often seem like they have never heard of it, but a week or two on a forum like this and you will hear it mentioned a lot!
The urinary and bowel symptoms are also common and should be evaluated. They can do evoked potentials on the bladder or urethra.
The cognitive stuff is classic. You have listed the typical cognitive deficits usually seen in MS (you haven't been reading a textbook have you?) The word recall, executive function, judgment, memory and analytical are the most common affected areas. You would do well to request a neuropsych evaluation which is very good at pinpointing the specific areas of deficit and can sometimes paint a picture of which neuro disorders are most likely.
Right now I can really relate to feeling like you need mutliple root canals and having been punched in the jaw. I had been avoiding the dentitst for a few months now, because 1) I hate the dentist, and 2) can't afford a root canal. Finally the pain became so severe before Christmas that I broke down and saw a dentist, only to find out everything was healthy. So this is most likely a lesion of the 5th Cranial nerve called the Trigeminal Nerve. The pain is known to be among the most severe possible - The disorder that you might (likely - if your teeth are okay) is called Trigeminal Neuralgia and is also called the "Suicide Pain," for obvious reason. It also sounds like you are describing it on both sides of your face (both nerves). Bilateral TN should always make a doctor think immediately of MS, as it is unusual outside MS. TN occurs in 3 to 5% of the MS population. It is usually treated with a med for neuropathic pain such as Neurontin or Lyrica. Some researchers have reported success in Europe using Alpha Lipoic Acid, but the data is not strong. It is an OTC supplement.
So, you obviously need a good and thorough neuro history and exam. I would highly recommend that you put together a comprehensive Timeline of the course of your problems. We have a Timeline tutorial that can help you make it easy to skim read and still get the whole picture.
You need repeat testing - MRIs of brain, c-spine and t-spine, done without and with contrast. You need an LP and repeated Visual Evoked Potentials. I would also probably recommend SomatoSensory Evoked Potentials.
And you must have the mimics of MS ruled out. Given the symptoms you report I think it is imperative that you have a Western Blot test done to rule out Lyme Disease and have it run through a reputable lab.
Well, I'm pooped again, so I will wait some of your answers. I hope this was worth being so patient for. Welcome again, Quix
Hi, sorry, I missed your answer somehow, just read it today. Now the hard part, remembering the sequence of events. lol
I had migraines from my teens til my twenties. They vanished and I developed psychomotor seizures in my later twenties. They vanished in a few yrs, then came back as grand mal, I got them every two weeks towards the end of them, with estrogen changes. They vanished four yrs ago, after 5 in one night, I haven't had one since. I am about to be 43.
I noticed cognitive issues in my early thirties, which could have been due to my seizure disorder they said, tho the only evidence they had of my seizures was some epileptiform activity in my left temporal lobe. I had neuro psych testing in 2001 and again in 2003. The results showed deficits in the same areas each time, slightley worsened in the later testing.
Due to memory issues, I'm cloudy on when what happened, but, I'll try.
I had ep / cat scan / sleep study / mri (without contrast) of my brain in about 2003. All within normal realms. These tests were before there was much sensory stuff, or much muscle weakness or fatigue.
I had a repeat mri of brain and one of spine in 2006 or possibly 2007. Again, no contrast, don't know the power of the machine. Normal, again.
The neuro couldn't successfully perform lp, due to meeting up with wandering nerves at the base of my spine, he said he would repeat it under flouroscopy, but, after clear mri, decided it wasn't worth it, as any results would be negated by the clear mri. So, no lp.
He gave me gabapentin for my facial pain and rib pain, but this was stopped by my gp after i began needing a very high dose. He switched me to lyrica. I take it when things are really bad, though it takes a couple of weeks to have any effect. I wean myself off it, making sure my pain has subsided for a bit, and don't take anything if I don't need it. Lyrica is expensive, my bfs drug plan won't cover it, as I have no diagnosis of diabetes, let alone anything else.
I left work in march of '04, i believe, due to getting clumsier, my leg collapsing under me, like a drunk person, but then catching itself, I dont actually fall, just stumble, and cognitive issues, again. I became progressively weaker, when I used to jog to work with a back pack full of my days supplies on my back.
I eventually, over a few months, degressed to the point where I needed a cane, and could only walk a block without starting to tremble and stumble. I stayed this way for a long while, almost a year from beginning to recovering, it was hard to even hold my arms up in the shower to rinse my hair.
During this time I had a lot of paroxysmal itching, weird sensory stuff, eye issues and a debilitating weakness.
Eventually I began to recover, I joined a senior citizen strength training group, moved on from there to the gym, and then aerobics. There have been episodes for a few week stretch where particular symptoms will come on, like getting a pimple, it starts w a little swelling and discomfort, progresses to the pimple stage, stays bad for a while, then subsides. Or, thats what I liken it to, anyways, lol.
Many of my symptoms have gone away entirely, or are minimal annoyances at most times. All of my symptoms come back when I'm over tired or have over exerted myself. Or if its just too bloody hot outside.
I am seeing my neuro again for the first time in over a year, I decided not to go back til i had something obvious to show him, but, the last two times my facial pain has been really bad. At the moment it's just mostly numb, a little itchy, but not very painful. Yet I know if it strikes again, I want him to know it's there. When he treated me for it, he didn't say what it was, only gave me meds. Now I'll be going back with a few more smarts. lol
Sorry for the long ramble, and thank you so much for answering me.
I do have some thoughts for you, and I'll try to get them tomorrow. It's off to bed for now. :)