Need help...

[hurtsobad73]

Hello to all,

I need your help. I have a history of fibromyalgia and a history of seizures. For the past week I have had a severe flare up of the fibro. However, for the last 5 days (and frequently in the past two months) my tongue has swollen and I have found it hard to speak. My words get twisted and I jumble my words. Then for the first time, this morning I was taking my vitamins and I couldn't swallow them. My throat is swollen. It doesn't hurt. I sound horse and it is hard to swallow anything, even my own saliva. I just feel funny.

Does anyone have any idea's or thoughts of what this could be. I am hoping not, but thinking this might be a small stroke. Or perhaps a seizure of some sort that I am not used to. I would appreciate any help one could give me.

I have not taken any new medicines or eaten anything different that I could have had an allergic reaction to. I am just not sure what I am looking at here.

Again I would appreciate any help.

Thank you in advance.

M

I posted this on October 30, 2006. Since then I have seen my primary who ruled out TIA, but sent me to my neuro (I am in limbo for MS). He has set me up for a MRI as well as another neuro who specializes in headaches.

Since my posting, I have had a increase in migraines (I have daily headaches) and my speech is getting worse. I can't seem to get my words out right. I jumble them. I mix up letters in my words and lately (with in the last few weeks) at times, I can't understand what people are saying to me. They are speaking clearly, I just can't understand them.

Just a little info on me...I have been dx with fibro, cfs, depression (since age 14), congenital spondylolisthesis, restless leg syndrome, periodic limb movement disorder, peripheral neuropathy, lordosis, "probable MS", migraines, chronic sinusitis, seizures (non-epileptic)

Medications currently taking - topamax-100mg(for migraines and seizures), seroquil-200mg(sleep aid)

Vitamins - DHA (pure), Ginko, B-6, B-12, Complex B, Multi Vitamin, Vit D, Vit E

My B-12 levels are currently 1367, however, I still shake tremendously and jerk. I can't stand up straight without wavering back and forth (saw my neuro on the 28th and he noticed this as well as the hands shaking). My body jerks when sitting or laying still. Even when I type, sometimes my fingers will hit the same key twice, because of a jerk in a finger. I also have short term memory loss and mega "brain fog"/confusion.

I know this is a lot to take in, but if anyone has any suggestions of idea's of what this can be, I would at like to hear it. I am thinking possibly a tumor. My last MRI was in August of 2004 which appeared normal.

Please any idea's for a desperate person...:confused:

M[/QUOTE]

[hurtsobad73]

Why isn't my posting listed on the "New Post" list when you refresh the page?

How are people who just look at "New Post" supposed to see it?

I am confused at this new site, any help would also be appreciated with it, also.

M

[LIZARD]

You have many symptoms of Arnold-Chiari Malformation, which is very often mistaken for MS. If you haven't had an MRI, get one right away. This can be treated, and you may feel considerably better after surgery.



Hang in, and good luck!

LIZARD :)

[waggoner1]

Hi M,

Just another thought for you- have you been tested for Antiphospholipida Antibody Syndrome? There is a blood test for this, if you test positive another test is required 6 weeks later for confimration. This is commonly mis-diagnosed as MS as symptoms can be very similar.

I had symptoms similar to yours for about 2 1/2 years. They thought I had MS for awhile, but all my tests were negative. It wasn't until I suddenly developed a blood clot in my lung that they determined I had APS. You don't have to have ever had any clots to have this disease- it is just a feature of the disease. TIA's are very common with APS.

"APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness."
http://www.apsfa.org/

I hope you find answers soon. Take care,

Kristina

[annelb]

I know back in Oct there was a discussion of possible celiac disease. Did you have any testing for that? If so, what tests were run? Even if the tests were negative, that does not rule out the possibility that gluten is making you sick. Tests for celiac disease pick up only the people who have moderate to severe villous atrophy. Recently there was an article saying those with the most severe damage to their gut may not have blood antibodies. Testing by blood and biopsy is far from perfect. You may want to read about stool testing for antibodies on www.enterolab.com

The neurological manifestations of gluten sensitivity include ataxia, peripheral neuropathy, depression, ADHD, seizures, schizophrenia, migraines, autism, cognitive dysfuction, panic attacks and behavior problems. I am not saying that gluten is the cause of these problems in everyone, but it is something to truly explore. You may have to look beyond celiac disease and consider gluten sensitivity. One percent of the population has celiac disease but there is evidence that 10-30% of the population has gluten sensitivity.

There is a Gluten Sensitivity/Celiac Disease forum here on BT. :D

Hope you find answers to your health problems.

Anne

[rose]

Regarding the B12, it is important to remember that removing the cause of damage is only the first step in allowing the body to repair what it can. Repairs can take a very long time.

So, along with whatever you do, I hope you will keep the B12 up.

Best wishes,

rose

[Mr.Doe]

I have a similar dilemna with ankle clonus and arm, leg, and body twitching when reclined or laying down. I get periodic severe headaches and light adversion which requires laying down for 5-8 hours to resolve as no medication has helped. After considerable searching for a year I have come up with possible neurotoxic exposure. Possibly a drug accummulation, a serotonin syndrome, Cushing's disorder, or some toxic exposure the body is unable to deal with over years of time. Not sure exactly what toxin yet, but the symptoms match nicely and the long line of doctors without a clue also matches the profile. Take a look at www.chronicneurotoxins.com for some new perspectives. I hope it helps. DOE

[mamamakk]

I am sorry you are feeling so crummy. I think I had responded to you last year but have your doctors thought of vasculitis of the brain. It causes daily headache, strokes or stroke like events, seizures, dysphagia (difficulty in swallowing), etc.

The other thing I would be concerned about is the Topomax. I was on that drug and it is nasty. There are many people that have a bad time with that drug. I could not put a complete sentence together. I had trouble remembering my children's names, the days of the weeks, etc. The nickname for that drug amongst neuros is dopamax because it can affect people's cognitive abilities so severely. I am sure it dropped my IQ by 50 points. Check the Headache Forum. There is a long thread about Topomax there.

[Tootsie]

The first listed Adverse Reaction to Topomax listed in an old drug book of mine is "abnormal coordination." Others, are difficulty with concentration, attention or language, difficulty with memory, generalized tonic/clonic seizures, sommolence, speech disorders, stupor, vertigo, malaise,fatigue............etc.

I don't understand why you are taking a drug like Seroquel, for sleep. Peripheral edema, is a listed side effect and may account for the tongue swelling. This drug can also be associated with a condition called tardive dyskinesia, that can be temporary or permanent...it involves involuntary muscle contraction.

I would suggest that you ask for second opinions and re-evaluations from a new set of doctors. Many times, doctors are grateful when patients ask for second opinions, especially when the symptoms are puzzling or intractable with the usual treatment. They are relieved to have their work either supplemented or validated by other professional colleagues. Cheerio.