Negative LP negatve MRI- very real numbness and pain

[robarino]

Hej!

I think I must be going crazy. I have had symtoms that started about a year ago. I woke up one morning and had a numb hands and tingling in my feet (8/1/2011). My eyes was also very blurry, almost blind for about a minute. The tingling and numbness seemed to go away after half a day. I should mention I was in a graduate summer course and drinking a lot at nights (maybe 25-30 beers a night for a month).

Over the next few months their was a numbness in my fingertips, especially when I would hold something for a long time. My left side was worse than my right side considerably. On January 1st of this year(1/2012) I woke up and the side of my face was numb. Two days later my tongue went numb. It then seemed to move down to my left arm with tingling and numbness. During the following 6 months I have woken up and had very blurry vision in my left eyes, almost to the point of not seeing, for 30 seconds or so. Otherwise vision is fine. I woke up one night and my whole body was asleep like numb. It is now August and tI have nearly constant numbness in my hands and feet dominant on my left side and some on my right side hands and feet. My left eye is very dry sometimes. I have constant tinnitus. Pain in my wrists, like a tight band is around them (comes and goes for minutes at a time). Very sore feet when I wake up. Numb patches on my feet.Burning toes (coming and going). A thumb tremor that comes and goes but has more or less gone. I have no weakness or dizziness. I have no coordination problems and I still run when I have time. As I type this I have a burning pain up my left arm and a tingling. A burning elbow.I also have times where it feels like air is blowing on my leg but it is not. What worries me the most is I used to have 3 or 4 good days and 3 or 4 bad days.  Now most days are just horrible.

I completely quit drinking on January 1st of this year. I am 39 years old.

Anyways I had an MRI with and without contrast and an LP and they both came back negative. I had slightly elevated proteins of 50 (normal max is 45) but the doc said this is absolutely not a sign of MS. She does not think I have MS. I am convined I do.

I have been tested for Lyme disease, Thyroid etc.  Everything was normal. The GP suggested it was conversion disorder not the neurologist. The GP is 6 months out of medical school.

[wiggles94]

PS - one last thing - I promise

many of us here have been told it's due to stress/ anxiety - and many have been made to feel crazy by docs.

Find a good doc!

[wiggles94]

speaking of stress -

there have been studies done that show people who have good supportive psychological help in dealing with MS - do better - at least as they are being treated for the stress.

So no matter what you are dealing with - part of  your plan should be to find someone who you can talk to who can help you sort out and deal with all the stress that goes along with this.

Just my 2 cents worth - your emotional and physical hand go hand in hand.
Doesn't mean you have conversion disorder - could have real physcial things going on - keep searching and taking care and get what YOU need!
Carol

[jenphilly]

None of us are doctors...  but just personal opinion here as if I was talking to one of my brothers...  you sound like you're a bit stressed...  stress is a horrible thing even for the most perfectly healthy person in the world.

Don't get upset, but have you thought about considering counseling to help manage stress?  

Best of luck in your search, and keep asking questions, think about changing doctors, find one who enjoys a good challenge and is willing to go thru everything to get to the bottom of what is driving your symptoms.

Jen

[robarino]

I went to a very big university hospital (Lund University Sweden). It was with and without contrast.

One other thing. I did have the "hug" in my upper chest. I also have a pain in my upper back near my spine. I feel it when I cough and reach for things. Neurologist did not seem concerned.

One thing that comes to mind is anxiety. Somone I work with had a numb face for a month from anxiety.

One thing that did dawn on me was the fact that for many years I had very sore feet when I awoke in the morning. I would walk out of bed like an old man. My wife would kind of laugh at it. I was running a lot during this time though so I chalked it up to that.

Finally I have gained about 25 pounds since this all started out of stress eating...nothing like 175 to 200...people dont recognize me!  :)


rob

[kwarendorf]

Anything is possible, but it's unlikely that you would have nothing show up on MRI's or in LP results and have MS. There are many MS mimics. As others have suggested go see a neurologist that specializes in MS. They should be able to either rule out MS or not. Either way, a GP is not the answer whether they have been out of Med school 6 months or 30 years.

Kyle

[jenphilly]

Same advice to you as I just posted to another....  get yourself to a very well estabished neuro to cover all bases.  Lyme can be tricky to diagnosis, did they do the PCR test on the LP fluid?   Serum (blood) tests can be ehhh....  

Have you also seen a rheumatologist?   Work between the two, you have symptoms that could be explained by rheumatology issues too....  the rheumatologist will order very very specific tests, not general panels.  

Same question to you...  do you know how old the MRI machine was?   Scans with and without contrast?   Have you seen a neuro opthmalogist for the eye problem?  

The problem with MS is that it presents so definitely in every person and so many people have negative LPs and unless you are sure you are dealing with modern and strong enough MRI machine, there might be small lesions an older machine just simply can't pick up.

Do you have good insurance to be able to go to a large university  hospital or even an MS center for evaluation?   Even if its not MS, many times, the doctors at an MS Center can give you an answer or some direction.

I'm not a drinker, so not sure about this question, but popped into my head, much like drugs, can alcohol abuse kill brain cells and cause longterm neurologic issues?   I know what it does to the liver, but any chance this could be damage related to drinking?  

Best of luck in your search for an answer and keep posting!!!   Most of us won't have a single answer for you, but you will find many people who will keep throwing ideas, thoughts and experiences out to you...

Jen

[wiggles94]

So sorry for what you are going through!

Have you seen a rheumotologist?  There are many diseases that cause symptoms like you are experiencing.  MS is only dx after all others have been ruled out - unless you fit the McDonald criteria.

Sometimes this process can take a long time.  It can be very hard waiting!  Are you being treated for any of your symptoms?  That can be done without a dx.

As to your question about neg LP and MRI - I had neg LP, positive MRI - and they still aren't sure what is wrong.  Have MS neuro who follows me and the best we can come up with is possible MS -

Good luck, and there are many on this site who have great info.  Very supportive group!
Carol

[robarino]

I guess I am asking how many of you have had negative LP and MRI (brain and cervical) and eventually gotten a diagnosis? What else could it be...what am I missing....