MS?? History of Psuedotumor-Sinus Stenosis

Hi,

This has been going on for years, and next week I have an appointment with a new neuro.

In 2003 I was diagnosed with Psuedotumor with accompanying high-grade stenosis of the distal transverse sinus. No MS lesions were found and my last mri was in November of 2004. I had an LP in January of 2004 which confirmed the pseudotumor. I thought that after the LP things were going well.

In the last year I've developed a lot of symptoms, my family doctor told me 2 months ago he believed I had MS or possibly TIA's and referred me to a new neuro. I had a few episodes where something went wrong, I couldn't walk correctly and my right side was messed up. It went away after 15 minutes or so.

I have excessive urination at night and I can get up 6 or 7 times a night, headaches, dizziness, mouth sores, memory loss, unable to find words when speaking, hands and feet extremely cold with feet becoming purple, double vision, numbness and tingling in hands and feet, sense of taste is off or it feels like what I have eaten is lodged in my throat, muscle spasms in back, burning pain in legs, arms feel like they weigh 1000 pounds each, and severe exhaustion.

This is definately much different than when I had pseudotumor.  I am 35 years old and have high blood pressure and diabetes. After the last episode my doctor put me on Plavix. I take meds for HBP, Diabetes, Acid Reflux, and high cholestrol.

My appointment with the new neuro is next week and I am very nervous. Can anyone help?

[floridamom2]

Welcome to the forum!  I am sorry you are having all these symptoms but I am glad you found your way here, it sure sounds like something is going on.  

What is a pseudotumor?  It sounds like you are going in the right direction by seeing neuro next week.  

Take care and I will be praying for you!
Kristin

[Jazzyfizzle]

Hi Wicket

We can sure sympathize with your symptoms. I dont' know anything about the pseudotumor either. What other tests have you had?

My Neuro is looking between the TIA's and MS also. I am also a diabetic.

Many hugs

Jazzy

[wicketlynn]

Thanks for the two that did bother to reply. I really appreciate that.

[LLWB]

Have you been tested for fibromyalgia or CFS? You have a lot of the same symptoms as I do. A neuro can test the trigger points on your body that differentiate fibro from other autoimmune diseases. Fibro fog (memory problems) debilitating fatigue, sore muscles etc. are some of the symptoms. Is your diabetes under control? I don't know about the pseudotumor either, but it does sound like a neurological problem. Good luck with your appt. Let us know what you find out. Getting a diagnosis can be a long and frustrating journey. Good luck.

[Quixotic1]

Hi, welcome to the forum.  I'm sorry you would a little put out at not getting more answers.  Most people on here live actual lives and aren't online that many times a day.  Also when you have something as unusual as pseudotumor they feel uncomfortable trying to answer when they don't know anything about the condition.

I'm sure you're frustrated.  Having all the problems associated with increased intracranial pressure is enough already.  I have to admit that I do not understand the significance of the stenosis of the distal transverse sinus.  Was that felt to be a cause or a complication of the psuedotumor?  Were you also evaluated for Chiari Malformation and for possible tethered cord?

The additional things that you are having now certainly do sound like they are neurological.  When the episodes occured suddenly and only lasted for minutes to hours, it does indeed sound like TIA's.  Rather by definition, in MS when a new symptom occurs it lasts for a minimum of 24 hours.  This is because the dysfunction result from damage to the structure of the nerve and not from a briefly reduced blood flow to the area.

The urinary problem - called nocturnal frequency.  Do you have problems with swelling of your legs or feet (or hands, for that matter)?  Do you feel like you are able to completely empty your bladder or can you tell.   If you work at it can you always get some more urine out?  I agree, it is imperative to keep neuropathy a bay, tight control of the diabetes is essential.  But, as many of us can attest, it isn't fair but you can have more than one thing wrong with you.

You deserve a complete rheumatologic and immunologic work up.  The cold sores would not be part of MS.  The other things you mentioned could, but could also be a part of poorly controlled diabetes.  Med interactions could be playing a role.  Fibro and CFS are also in the running, LLWB is right.

When was your last MRI of the brain?  Both migraines and HBP can casue white matter lesions, but it should still be checked.  Also nerve conduction studies might be useful in looking at why the limbs tingle and burn.  The cold purple feet sound like peripheral artery disease.  Do you have trouble with your legs and feet cramping?

It really isn't fair to have all this going on and be only in your thirties.  Let's pray that all the problems are due to problems you already have and not the addition of MS.  One of the things to ensure that they test you for is Hughes Syndrome.  This is basically a tendency to clot too easily.  It is also called Anti-Phospholipid syndrome.  Because of teeny tiny clots the person acts very much like they have MS.  Have you been on Plavix long enough to know if any of the symptoms are improved?

Good luck, and I'm sorry again we weren't as prompt as you hoped.  Quix