Fatigue, Numbness, Tremors

[juniorohio]

Back in Oct had issue where had the feeling of something stuck in my sinus. It went on for a month or two of constantly not being able to get the object out of my throat. I went to various doctors and they all sent me to allergy doctors and pretty much anyone who wouldn't check my sinuses out. I finally went to a ENT and by the time I got to him I finally felt better by that point but obviously he didn't see anything since I think whatever it was finally let go.

I then had a what I call an attack of my neck, head, right chest and right arm being numb along with tremors in right arm and neck. I went into hospital and they checked me out and once again they said there was nothing wrong.

Since then I really haven't felt better. I continue to have sinus issues with the feeling of something being stuck. It will eventually clear itself and I can spit out what I would say is balls of infection. It has a infection smell to it and looks like hard pus. I do also get nosebleed when this is going on and is a constant battle.

At the same time I have been having others symptoms as well. Face is completely numb all the time and other body parts going numb on and off. You name it, it goes numb at some point. Besides numbness other symptoms are kidney stones and pain, tremors, fatigue, and the never ending ringing in my ear.

I have been seeing a neurologist since my brother and sister both have ms and have gotten MRI done. They have found lesions on my brain but none are active. Original neuro found six and 2 yrs later different neuro found 14.  They all sent me down to MS neuro with symtoms I am having and he pretty much dismissed all my symptoms with some reasoning down to coffee is creating my tremors. For the record, one cup of coffee a day for probably 20 years with no tremors until this all started in Oct. Spine MRI was also clear.

Along with all the blood test and spinal tap, all was clear.

After seeing so many doctors, I am really at a loss. Last year at this point I was mountain climbing and hit 5 14,000 ft mountains. Since having these issues I can barely make it through a day of work. I workout 3 days a week and am not overweight.

I feel I am kinda getting a raw deal with doctors since they all refer me to other doctors and in the long run, they always fall short of having all my records and usually dismiss my symptoms as if I am a child who has no idea what my body feels like. It is really putting a strain on family and marital issues since I was a very active individual who like to go and do things but since I always feel like ****, I really am just a bum now. It is really getting old and at this point, I have no idea what way to even go.

Any recommendations would be great.

[Quixotic1]

Welcome, and I hope we can help.  Kathy gave you some great advice and I will elaborate on some of it.  First, you are truly not getting from the doctors what you need.  You are clearly going to have to solve some of the problems yourself.  One of the things we do here is to help people advocate for themselves more effectively.

You really do need to collect ALL of your medical records so that you have copies.  This includes results of the testing you have had.  Then when a doc doesn't have the records he needs you can provide it for his office to make copies then and there.

It would be a good idea to make a timeline of how and when your different symptoms began and how long they stayed, went away (if they did) and returned.  That will give the docs a better idea if you are truly having relapses and remissions.  We have a little article on making a timeline.  It might help.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

I can see why you are writing on an MS Forum.  With two siblings with MS, it is certainly on your mind and your are at a fairly high risk for it.  You are also in the age group that it begins most commonly.  Your symptoms of numbness and tremors, plus the great fatigue are very suggestive of MS, but not very specific to it.  There are many mimics of MS and you should have already been tested for them.

The MS Specialist was basically trying to tell you that all of your symptoms were anxiety related - perhaps because of the MS in the family.  Shame on him!  BTW - is anxiety a problem of yours?  If it is, it is a good idea to address it through treatment, so you can tell the next docs - "No, this isn't anxiety."

You say that the numbness you have moves around.  How quickly does it move around?  How long does it last?  What is your neuro exam like?  Do you have any weakness other than the severe fatigue?  Have your doctors looked at other things like your thyroid and blood counts?  Have they checked for for other autoimmune diseases?

Your doctors should be far more concerned that you have a growing number of lesions in your brain.  Could you give us the results of the last brain MRI you had?  Not all lesions point to MS, but with your family history I would certainly be suspicious.

Your spinal LP was normal.  I would only accept this result if it was done on a high-resolution MRI.  Your LP was also normal.  This does NOT rule out MS.

Tell us about the tremors.  Are they worse when you are quiet and not moving or do they appear when you move?

Now, the gunk you spit up out of your throat is nasty and would have nothing to do with MS.  It sounds like you might indeed have sinus issues, possibly sinusitis with post-nasal drip.  The ideal way to look for sinus disease is by having a CT scan of the sinuses without using contrast.  I would hope the ENT would have considered that.

Finally, do not ever let a doctor tell you "there is nothing wrong," because they didn't find anything.  You KNOW something is wrong, they just couldn't find out what.

We'll be waiting for the answers to these questions and I hope you stay.

Quix

[saveone]

Welcome and Ditto to everything Kathy said.  terry

[Fluffysmom]

Hi there, is this your first visit?  If so, welcome to the Forum; it's a great place to be.

My only 14,000+ mountain I summitted was Mt. Shasta, and that was several years ago.  I still miss climbing!

My first suggestion would be that you get all your records from your various doctor's; their chart notes/clinicians notes, test results; blood work, MRIs, any other imaging or LPs, etc.  Get copies of any imaging on CD.

Next, I would suggest that you make a timeline of your symptoms; when they started, how long which symptoms lasted, if you were ill before they started, etc.  There are examples of Timelines on the forum if you're interested; just ask.

Another idea would be to write a short description of how your life has changed, what you have lost, since your symptoms began.

Once you are well organized, with all your own records at hand so you know your own test results and what doctor's have said about them and their examinations of you, I would suggest that you find a new neurologist to take you seriously.

My first neuro told me that my tremors were from anxiety.  I told him that I meditate and have little to be anxious about, ant that the tremors were just there one day when I woke up, then got worse over the next few days. (I'd already shown him my recent brain MRI with lots of lesions, report stating "far and away most likely to be MS").  He told me that if it would make me feel better, he could do another brain MRI in a year.

That was my only visit with him.

What you're going though is not uncommon; I've seen two general neurologists, an MS specialist, Oto-neurologist, neuro-ophthalmologist, urogynecologist, rheumatologist, and am waiting for an appointment with my new MS specialist.

I know that there is something wrong; the tremors, loss of balance and fatigue are what sent me to my PCP who ordered that first brain MRI.  My life has totally changed since February of '08 when I woke up with those tremors, and I won't quit until I find answers.

I hope that you are able to continue searching for answers, and get them.  This is a great place for support and suggestions.  There are a lot of us that understand what you're going through.

Take care, and give yourself a break.  You'r not a bum, you're just not well. and deserve to know what is causing your problems.

Kathy