LOOOONG time no see ... will I stay in limbo, or will I be crazy?

[leahcarachael]

It has literally been 3 years possibly more since I last posted on this site.

At the time I did I was having symptoms that concerned me. I think at that time it was having a tremor in my left hand, tingling, and an electric shock like feeling. I went to a neurologist at the time, and during all that I think I was sorta active on here. The neurologist at the time did an MRI he told me everything looked fine (a little arthritis in my neck) and then sent me on my way.

I came to the conclusion that after years of of doctors telling me to go see a shrink that my problems were all my head (now I am battling these thoughts again as symptoms have come again). So, I took the doctor at his word. I ignored my symptoms, and listened to everyone who said I was a hypochondriac and crazy, and then one day they were just gone. It confirmed to me that it was all in my head.

That was more than 3 years ago, until about 3 weeks ago.

I was having some pretty significant pain in my neck and with it some numbness and tingling in my arm hand and fingers all on the left side, plus tingling in my left check. The tingling was constant and never subsided. I would also get complete numbness on the far side of my left leg (the outer side), but that would come and go.

I decided to go to the urgent care clinic to see a doctor about the pain in my neck and the numbness. (I thought I had a pinched nerve in my neck) Oh and I should probably mention that I do not have medical insurance and have to use the low cost clinics and county hospital should I need any medical care.

OK, so I told the nurse my symptoms at the clinic and I was actually kind of surprised when they started hooking me up to an EKG machine, seems that if you are having numbness on the left side of your body including your face they automatically think you are having a heart attack or stroke (the doctor told me that numbness in the face is not a symptom of a pinched nerve in my neck. GO FIGURE!) My EKG came back "abnormal" so the clinic doc instructed me to go to the ER. LOL

OH the fun continues!!

Once in the ER they did rule out any issues with my heart and then went on to my original complaint, the pain in my neck. The ER doc did an X-Ray, then a CT scan, and said I had degenerative disc disease and bone spurs in my neck, and that the numbness and tingling was in fact probably due to pinched nerves caused by muscle spasms. So he gave me a muscle relaxant some ibuprofen and sent me home.

That was 3 weeks ago. The pain is better (in my neck) but the numbness and tingling still lingers. And my old friend "the tremor" in my left hand has resurfaced. The numbness and tingling in my leg I think is affecting my feet cuz I stumble a lot. I have noticed that I have been significantly clumsy and lose my balance if I try to move to fast.

I don't know if this sounds weird but the tremor in my hand seems to get worse if I spend any significant time outside (I live in Texas) like it would do if I were outside and it was really cold. Instead mine tremors because its hot. I am SO backwards!! LOL

When the side of my left leg goes numb it is completely NUMB I can't feel a thing accept a deep itchy feeling. The numbness doesn't last long though, the longest it stayed completely numb was about 2 hrs most of the time it comes and goes. I do get tingling in that leg too though.

Does any of these things sound crazy? could I possibly make up any of these symptoms? I will be honest I feel crazy. LOL! Especially since the last time I was experiencing this it went away.

But something else with this I have also noticed, is I have just been feeling ummm... retarded.......

I swear I will walk into a room where the light is on and switch it off thinking I am turning it on. Or I will walk into a room where the light is off and think in my head I need to turn the light off and turn it on. This has to be psychological right!? SO STUPID! I stand there for a minute until my brain catches up and I say "oh wait, it was already off" what the H is wrong with me!?

I will do the opposite of what I think, I will forget what I am doing mid action LOL! It is actually starting to really affect me at my job. I am mistyping which can be embarrassing at work. Like today I meant to type brain and I typed brian. STUPID sht like that.

It is also affecting me in a dangerous way. I have been stopped at a stop light before and in my head (I don't know if I thought it turned) I saw green and went (it wasn't until I realized that nobody else followed me that I thought "OMG" was it still red?) I could have killed someone!

I will stop at a stop sign and forget to go LOL! I sometimes don't feel safe to drive. Is there a chance this could just all be psychological, or "anxiety" as I have read that sometimes anxiety can cause tingling and hand tremors (although its weird its just one sided) and while I have been pretty stressed in my life lately I don't necessarily feel panicked to the point of hyperventilation which is the only time that has ever caused me numbness and tingling due to anxiety in the past.

SO here comes my difficult decision. Am I waiting until I feel without a doubt that something is going on physically and that another doctor isn't going to tell me to go see a shrink, before I go sit in the ER agin for another 16hrs. Or do I just wait until it goes away again, and vow that if it does ever come back again that I will go back to the doc and address it then?

Will it get better this time, or will I always feel this way?

Should I stay or should I go ... LOL.

SO many questions, so many uncertainties. I don't want to waste tax payers money with an expensive MRI if it is not absolutely necessary. Does that sound stupid? LOL

OK, well thats all. I am sorry I am so wordy. LOL

[JayEm]

I can't answer these questions for you, obviously. But I can say that I wish that I'd been more assertive about finding answers back when I was first getting sick. If nothing else, I would have had more documentation of the way my health has deteriorated over time, and I might have a diagnosis by now.

That said, I would want to have had doctors who worked with me to figure out what was going on--less about the tests, and more about figuring out what was happening. As it is, I'm more than a decade down the road, and I will seriously be kicking myself if it turns out that this is MS and I could have slowed the progression of disability if I'd been on DMDs.

For years, my doctors told me it was psychosomatic. So I went to a therapist (several, actually), and made really good progress in dealing with my mental health issues. Unfortunately, one result of therapy was that I was less able to be in denial about my life--including my physical health. My therapist is pretty clear that most of the symptoms causing me trouble are not usually associated with depression or anxiety.

I *want* to believe my problems could be psychological, because then I could have some more control in fixing them. I've gotten good at managing anxiety, reducing tension, and dealing with other emotionally based problems. And it does make a difference in my life... it's just that it doesn't solve the problems that are physically based.

I, personally, wouldn't base my decisions on whether or not taxpayers are paying for my care. I make the decisions based on whether or not I would pay for my care. So I do try to avoid unnecessary tests, even though my insurance co-pay is only $15. But if I talk with my doctor and we agree that it would give information that would be helpful in figuring this out, I get the test done.

Good luck.

[gomer]

You are NOT alone!

I had problems in high school, developed diplopia that required prisms (glasses) just after high school, was not allowed to march in boot camp etc.

Fast forward to the 1980s, ended up on disability in my 30s, my neuro issues were blamed on my diabetes, the VA in the mid 80s sent me to their shrinks because I complained too much "something else" was wrong. The shrink declared me sane and not even depressed, just "adamant" that whatever it was, was not showing up on tests.

Fast forward another quarter century, a new eye doc opened the MS can-of-worms when I went to get my prisms updated. With the can-of-worms opened, my fam doc gave me a MS, "it fits" pep talk and pushed for a formal Dx.

Yep it can take years, even decades from Sx to Dx, with no end of twists and turns along the way. Lucky for me my MS had been relatively mild most of the time. By the time I was properly tested, MRI, LP EVP etc, I was needing a power chair part time. One positive note, the formal Dx answered and connected over 50 years of disconnected dots and problems that came & went or stayed forever w/o knowing WHY!

Good luck on your getting your dots connected, answers and proper treatment, sooner rather than later.

Gomer Sir Falls-a-lot

[leahcarachael]

Thank You

Thank you both so much for your reply. It does help somewhat to know that I am not alone. I was fit to be tied when I wrote the original post... LOL. So frustrated!

My mom (who is an R.N.) even told me today that if I lost some more weight (I have lost 22 pounds already so far) and stop stressing, all my symptoms will go away. And she "implied" that doctors will not take me seriously or want to help me if I was still fat. That I need to wait until I take of 50 pounds to go to a doctor.

It is not only invalidating of my discomfort and my pain, but minimizing as well. Because I am "fat" my leg is numb, and my arm and face tingle while my hand trembles. *sigh*

I am not diabetic. The doctors are very quick to test for that every time I am in an office. Bloodsugar is always good! But its still because I am fat that anything ever ails me.

Anyway ... Oooops sorry I got of topic. See you get me going and *URG!!!!*

My reason for this post is to humbly thank you both for taking the time to respond to my original post. It means a lot to me, and really helps me.

Thank you!

[minivanmama]

Bless your heart. I am so sorry that you are feeling so bad and are getting the run around.

I would go and see the doctor is you can. I know it is hard but it may be worth it or you could call and see what they say that to do.

Just know that you are not carzy. Come and visit the island and you can post there and talk to others who are looking for answers.

Keep us posted on how you are doing and feeling.(((hugs)))

[landspike]

I think we are all a bit crazy!

So many posts and all so familiar!

I do believe that there must be a phycological aspect to anything that goes on within us, but how do you explain all of these wonderful folks (including myself) some already DX'd and some of us still looking for that illusive answer with so many different backgrounds, and so many of us having the exact or similar types of SX's? How can we have the very same symptoms as people that have been diagnosed with MS?

As another member said it on a post, "It is not that I want to have MS, but everything else has been ruled out"

Pretty much in the same boat here, from being so tired after a few hours at the office that I can't find a confortable position to mispelling my own name, to having to wear prism glasses for unexplained reasons.

I would like to think that we have a good health care system here in Canada, but I also wonder sometimes if I am consuming too many of the resources, but when it takes me 3 attemps to stand up from my chair at my full time job, I realize that I am not taking money away from other people, I am productive and contribute my share so that other people who need tests like MRI's can have them done.

I want to have a diagnosis so that I can be properly treated and continue to contribute to the system that will hopefully help someone else.

Bothered by the heat? don't think you are crazy, I feel better on a cold snowy day than right now that the temp. is 35C.

Just think that we are all a little crazy, but we have a duty to take care of ourselves and maybe even help others.

[hexed]

Well I'm not quite sure how much this will help seeing that you do not have health insurance, and hopefully with the new health care law you can get insurance without worrying about being rejected for a "previous condition" (even though you have not be officially diagnosed)..

I live in Dallas as well, and I don't know where I would be without UT Southwestern. It takes a while to get in (I was blessed enough to have a cancellation minutes before I called) but it is COMPLETELY worth it to visit their MS Clinic. They are on the cutting edge of MS research. Newest meds, trials, procedures, and in your case, diagnosis. IF there is any way you can make it there, I would not hesitate. If I had to wait 3 years for my dx, I would have paid everything out of pocket.

As I said... I don't know what good this info will do without insurance, but you are blessed to "possibly" have this disease in Dallas TX. It is one of the best cities for MS research.