Carolk,

It is the most frustrating time I have been through. Like yourself, everyone has a differnst opinion depending on their field or rank within that field. If your case doesn't interesting enough to get them kudos, they seem to come up with some reason pulled out of thin air. A virus caused it, or it's your age, or you need to see another Dr. At least the seeing another Dr. one gives you hope for some answers. I hope the Neuro has those answers for you.
I had a bad day with my seizures yesterday. Had 5 in a row. Daughter had to call 911. I have never had these types of seizures before. Jerking of the body, and ridgit extremities. Given two injections of valium, than Adavan, then 500mg Dilantin. Told to take my regular meds that night(5hrs later) 500 Keppra and 300 Dilantin. I slept very good.
Saw Neuro today, another med change, and will be refered to Dartmoth-Hitchcock Med Center. Hope to get answers.
Good luck with your appointment, and bring lots of questions.

Garney

Thanks Garney, I plan to. I have been carrying my list of symptoms, my bloodwork, my printouts of info that I have of MS and related disorders that I have been collecting for the past 6 months. I am more than prepared. My biggest fear is that he will say that we need to wait and see. It is all so overwhelming sometimes. Like they say, the waiting is the hardest part.

Forgot to say sorry about your seizures. I used to have a client who had seizures and more than 2 a day would totally wipe her out. Your daughter must've been freaked out. I know mine would've. Good luck with Dartmoth-Hitchcock.

Neuros differ on age as a factor. Yes, it's considered a disease of young adults, but what if a person had undiagnosed MS for 30 years before they finally got an MRI, visual fields, VER, tests by physiatrist, cognitive panel, and all the other thorough workups? I never had an MRI until I was 50. I had many brain scars and problems shown on all other tests, but I'd had symptoms for a long time. My case was made more difficult by the eventual diagnosis of porphyria as another disease present.

Some docs said, rudely "but you're too old!" to have MS. Others said they had dx'd it in people in their 70's. The age thing depends on many other factors. My aunt was not dx'd until her 40's, after many years of symptoms, but she was dead before 50, with paralysis, blindness, inability to speak. So many factors to consider, no wonder neuros are "nuts". And drive us nuts.

As for my aunt, I think she would not have gone that way if she had been on the Swank diet. Her diet was unusually high in fat, saturated. Swank would have said this caused her early decline. He may not have been right in every case of MS, but I know that if my MS is related to my aunt's, that is, the same type, the Swank diet is NECESSARY for me. Saturated fat kills those with our type of MS.

I was a patient and test subject for Dr. Swank. Not all respond to his diet.
Some find it, as I said, NECESSARY to survival.

Mariel

Would just like to say that I was in my early 60s before being diagnosed. Yet, medical records show that I had had MS for at least 30 to 35 years. I was reporting symptoms to my regular Doctor. Unfortunately, he didn't know enough about MS to do anything.

It was only after I got really bad off and realized that something was wrong with me neurologically that I took myself to a neurologist. I actually was diagnosed by the first one as having pheripheral neuropathy. When he wasn't doing anything to find the cause, I went to another one. He did an MRI and immediately began other tests after he got the results of the MRI.

I wish I could have gotten on one of the meds sooner.

Virginia

I have had that, too. In fact, it's one of the "things" in porphyria. I had it bad in the fall because a dental surgeon gave me the wrong anesthetic. Vertigo and PN in the feet for months. Got over vertigo in four months, feet better in six.

I jerk, too. Mostly at night or when I lie down to relax. My lower spine and legs jerk. It's called myoclonus, and some people call it myoclonic seizures, but some say it is not seizures. They obviously don't know! I control it with l050 mg of Magneisum a day. I could not take Dilantin because of having porphyria, but Klonopin is one drug I can take. I take a small dose daily, but magnesium is the thing which really helps the myoclonus. B1 has helped lately, too. As I age I need to add more things to help the condition. p-5-p (pre metabolized B6) has helped too.

Sometimes I jerk clear off the bed. It's been bad lately and harder now to regulate with magnesium.

I have lots and lots of brain scars and about 50% of docs call then MS and the other 50 % call them porphyria scars. They don't know. So they guess. since I got dx'd with MS l9 years ago I have only met two neuros who had a clue about this subject. I met one, and heard about the other. The one I met was a "headache" neuro I was sent to after I went to the ER with the bad PN. She said she thought the scars were probably from porphyria, but that I needed to hook up with a good MS clinic as they were the best to treat this condition, whatever it was. She wouldn't take me on as a regular patient because she specialized in headaches, and I don't have any, or if I do, they are not painful. Possibly silent migraine?

I will never fully know what it was that I had. But both porph and MS are in my dad's family back as far as we know to look. Great grandma in a wheelchair in my dad's childhood home, presumed MS. His mother had porphyria, dx'd in retrospect by my diagnostician when I got the dx. I probably have a "both" in some weird combo that goes down generations. Double whammy. Means I can't take MS drugs.

Mariel

Hello, Lady Express, I stumbled acrossed your letter here, Iam new at this, trying to find some help Or answers to my dilemia! If your still on this site, I would really like to talk to you, you seem to know alot, I have went to 4-5 Neuro's and this has been in the last 6 yrs now, and now things are seeming to really kick the heels up & get worse,and I am having more symptom's and now my heart is acking up along with the sezuires and tremor's . I also have been told that the white spot's ( lesion's) could be nothing to worry about. Iam 49 yrs old, I used to think I was very healthly. Hum? I have a long story,it's kinda hard to put it all into a ball, but I will wait to see if your still around first, before I get all started. This all began with taking a 5-HTP over the counter from a healthfood store. I statred having teerible seizure's and in ICU for 4 days and, not being able to talk and when I could I would have seizure's, the Dr's said the only thing he could maybe put the blame on was the 5-HTP. Now Things have gotten a lot worse. I hope to hear from you, Thanks so much!

Hello Virgnia, how are you? I found your post on this great site, I hope you dont mind if I write you, I am to, trying to find answers. Can you tell me the tests they had you take before you found out for sure? And How old are you now? And are you on any Meds? Thanks Virginia, I am just so frustrated with going around in circles,and many phone calls & going to Potland trying to find a good Neuro. I have had 3 MRI'S & lots of test's, but no Spinal Tap yet. Thanks, Linda

the Dx for MS involves both damages on a MRI, and a spinal tap to see if MS fatty stuff is sloughed off in your fluid. You usually have to have both show MS, sometimes a clean spinal tap is found, if so, it opens up the possibility of a group of diseases called leukodystrophies.With a clean spinal tap, they go back to your MRI and look really closely to see if the pattern of your damages line up with MS damages or are consistent with some of the leukos. It can take time to get all this done. The trouble with doing it is that if leukos are Dx'd there is nothing they can do but treat symptoms, so doctors are tempted to say MS because at least there are treatments for MS....not very good ones, admittedly, but treatments nonetheless. And most leukos cannot be identified anyhow (the second largest group of people with white matter damages are those with undiagnosed leukos), so you stay in limbo with a leuko Dx.

Hi Californiagrown,

I popped in at NT and noticed your thread on the Announcement forums first, so I directed you here. I see you've already found this forum though and some of the information.

You said on your other posting that you have "white spots" and I see here that you have seen several Neurologists already. Do you have copies of the MRI reports that were done? That would be a good starting place as far as identifying if they MAY be MS lesions.

Have they suggested a "demyelinating disease" previously? Have the Neuro's given you ANY indication of the cause (other then the use of 5-HTP)?

Do your symptoms get worse and better? It would be great if you could provide more information.

Welcome to NT.

Cherie