Please Help!!I'm desperate for answers!!

I have been searching for answers for almost 3 years now, & don't seem to be able to find any. I'm guessing my lack of health insurance is the reason. I started out with extreme fatigue & weakness, I had an MRI (showed lesions on my brain), vitamin B levels are normal, test done were they shocked my legs(it was normal) & was told I had probable MS, then told that no, I didn't have MS. This was a year ago that these test were done. Now I have started seeing a new family practioner, who performed some neurological exams in his office(I couldn't stand with my feet together & my eyes closed, I fall over), I couldn,t smile on one side of my face, He had me to stick my tongue out & I could move it to the left but not the right,I can't walk with one foot in front of the other, so he concluded that somethng neurological is going on. I came to this Doctor after seeing a neurologist (who was very rude & would not let me talk what so ever), She told me nothing was neurologically wrong with me & didn't do any of the tests the new family practioner had done. So I'm very frustrated & confused. Whatever this is has started to ruin my life , as I was a very active person before. Sometimes its like someone fips a switch & I feel better, sometimes for a month or more. Then here it is again & it always brings new symptoms with it. I can"t walk at times & when I can then not very far( my legs get very weak & tremble), the fatigue is horrible, I have tremors & now my muscles randomly twitch, my right eye feels like someone sticks a knife in it & I'm very light sensitive(wear sunglasses in the house) , plus it hurts when I move my eyes, my legs & arms feel like someone tied concrete blocks to them, I have decreased sensations in my hands & feet (like I'm wearing gloves), & as if that weren't enough now I feel like waves of electricity run through me. I have had my husband come to watch my muscles twitch , just to prove to myself that I'm not competely crazy.Now I';m worried about my brain function as I forget things alot more & seem to lose my train of thought often. Does anyone have any answers, I just want my life back!! The only tests  have had were a year ago & the ones I mentioned earlier. I was told the reflexes in my feet were not right (babinski i think) but not sure of anything else, I saw an opthamologist, & she couldn't explain what was going on with my eye. Whatever this is sometimes goes away & I start to feel somewhat better but it seems to always come back & bring some weird new symptom with it. If anyone has any suggestions as to what to do or where to go, or even what kind of Doctor to see please let me know!! I would so appreciate it!! Thank You, Tammy

[Tammy826]

Please forgive me , I forgot to also mention that I have trouble swallowing, sometimes its like my throat completely closes on me & it doesn't matter if its just water. Like I mentioned earlier my memor is not to good these days & with all of these bizarre symptoms it gets hard to remeber them all.

[Lulu54]

Hi Tammy,
Welcome to the MS forum here at MedHelp - I just wanted to tell you that someone will be by eventually to help you with some advice - weekends get very slow around herre, and especially a holiday weekend.  

You sound like you could use a good neuro workup from a good neurologist and not the one you have already seen.  That would include blood test and MRI's to get  aclear idea of what is going on with your body.

While you're waiting around here, please take some time to reado our health pages, yellow icon on the upper right side of this page.  They have tons of information and will be of great use to you in understanding more about MS and the diagnosis process.

I'm out of here for the evening, but will check in later to see wht others have told you.

Welcome again,
Lulu

[ShockedToday]

I'm so sorry that you are going through all of this.  I'm very new to MS myself having just recently been dx.  Have you considered going to an MS specialist?  Just an idea.  Lots of prayers that you get some answers soon.

ST

[jed9999]

Welcome to a caring community that will help you find answers, I am sure. I am not a medical professional, but I see your symptoms as pretty classic for something such as MS. I agree that your lack of insurance will probably prevent any of the classic testing, and anymore that is generally required to get a diagnosis.

I would guess you might be able ultimately to contact one of the disease modyfing companies to enlist their help in completing testing and getting a diagnosis so you could then go on to obtain medication. I'd suggest you read and speak with people on here to familiarize yourself with MS. I know many people have taken this route and I hope others will speak up as I am unfamiliar with how to proceed.

I guess, Tammy, after learning more about MS you'll want to look into Copaxone,Betaseron and Avonex through their manufacturers. That's a big task, but there are many people and many wonderful reference pages here to help you. There is always hope! We're all in this together. Jane

[Tammy826]

Thanks for your responses!!I'm sure there are several of you who know how I feel. After being overlooked by doctors you start to feel like a crazy hypochondriac or something. Its gotten to the pont that  have my husband come & look at my muscles twitching to know its not "all in my head".the last neurologist I saw says that nothings neurologically wrong but I sure wish she could step into my body for just a few minutes & tell me that. If its not neurological then why do I feel waves of electricity running through me followed by tingling & numbness. I don't know but its enough to make you crazy!!I have filed for disability but with no insurance  no confirmed diagnosis my chances are pretty slim. Please keep me in your prayers & thanks so uch for your support!! Love, Tammy

[Quixotic1]

I missed your posts the first couple times around.  I'm sorry, with such symptoms, that you have not been able to get a good work up.  And, yes, I suspect that your lack of insurance is standing in your way.  It sounds like you have found a PCP who is doing the right things (like a competent neurologic exam and referring to a neurologist.)

The neuro you saw is a sorry excuse for a physician and for a human being.  I don't know why some are so rude, arrogant and uncaring.  Any neuro that does noit do a thorough exam on a first-time patient should be reported for incompetence and probably fraud!

The symptoms you report are very common in MS, but there are other diseases, too that can cause them.  So, there is a whole procedure to nailing down an MS diagnosis.

When they first thought you were a probable MS, what did they base that on?  Did they do an MRI?  Do you know what made them change their mind?

Let's look at your problems:

fatigue and weakness - is this all the time?

Weakness on the right side of your face.  This is called a Bells's Palsy and can be a sign of MS, or other diseases like Lyme Disease or can happen by itself.

Your exam showed a positive Romberg's Sign and you failed Tandem Walking.  This indicates a problem with balance and coordination.

You clearly have "attacks" which improve and then you feel better.  This is suggestive of Relapsing Remitting MS, but you need further evidence.

Tremors and fascicualtions (twitching)

Eye pain with light sensitivity - suggestive of optic neuritis in your right eye.  You really need to see an ophthalmologist.

Numbness in your hands in a glove distribution.

Paroxysmal (sudden) electric shocks of paresthesias

Poor mental function.

This has to be evaluated soon.  I would say that MS is a definite possibility here as is Lyme disease, and a few others.

I have two suggestions.  One is to contact the three groups that advocate for MS; the National MS Society (you would actually contact your local branch), the National MS Association and the Consortium of MS Centers.  Ask if any of these groups will aid in obtaining an evaluation and/or an MRI.  

See if any hospitals nearby will give a deep discount on testing for people who are uninsured.

Ask your new family doctor to do some of the initial testing for MS and its mimics.

Finally I think you should write up a timeline which shows how your symptoms have acted.  Try to remember some of the attacks and what symptoms showed up.  Also it is important to remember any periods of time when you felt better, when the symptoms improved a great deal.  Note how long the "good" times lasted.  If you can show a very clear pattern of attacks of symptoms and then of improved times - it will go a long way toward helping the doctors diagnose you with whatever it is that you have.

You really need an evaluation for your eye.  If the eye pain gets severe, I would have you go to the ER.  That is one symptom that they cannot ignore and might get you an MRI and an appointment with an eye doctor.  Your symptoms sound like optic neuritis which is very common in MS.

I hope you stay here and let us help you with this.  And I pray that we will soon have a way to offer the uninsured the medical coverage all humans deserve.

Quix

[PastorDan]

I'll addd one thought to Quix's exceptional advice.  Once you have that timeline written out, ask your husband to go over it with you.  Try to fill in the blanks together.  I'll just venture a guess that you have problems with your memory, too, and sometimes two heads are better than one, as they say.

Blessings to you & yours.

[Erin0313]

Welcome!

I am so sorry for the pain and frustration that you are going through. You have found the right place for advice, sharing & caring and that is a huge start and will continue to be a great comfort.

Quix gave you a fantastic breakdown of your symptoms so take a minute and just copy what she wrote. Then you and hubby can go from there. Starting is sometimes the hardest and she did it for you :)

Great advice from Pastor Dan too as you yourself said you have memory issues so get hubby involved with the list.

I hope that you find a good and caring neurologist that will find answers for you.

Keep us posted with your progress

Erin :)

[Tammy826]

Thanks again for your replies to my questions! God bless you all. I guess if I'm crazy then  have found a great place to be lol!! It makes me wonder with this many people experiencing the same types of problems , why hasn't the neurology community opened their eyes & looked into it?? Quix, I sent you an email to answer the questions you asked of me, again thank you . You all are in my prayers so hang in there!!

[Weakandfalling]

Dear Tammy,

Your words could have been written by me for I, too, have had similar mysterious and life-altering symptoms for years without a diagnosis.  Only difference is:  I have excellent medical insurance - yet even paying those hefty premiums left me in the same place as you and with essentially the same negative experiences and frustrations (physician rudeness and indifference) that you have experienced in trying to find out what is wrong with you (in addition to the extreme aggravation of having to pay remaining medical bills, after insurance, for essentially no added benefit).  Like you, I was told I had nothing wrong neurologically, even after having  failed a Romberg test and with balance issues and unreal weakness and fatigue!
My point to all:  Having good medical insurance today is not the advantage you would think it is:  It is our medical system that is broken and not responding favorably to patient issues.  Having used my insurance extensively, I am, like you Tammy, still left without an answer.  Tammy826, you would likely be where you are right now even with medical insurance!

Quix1 offered some great advice in her post to you.

I also suggest clicking on "Health Pages" (at the top right corner of this page) and reviewing and copying the McDonald criteria for diagnosing MS as well as reading everything under the MRI headings in Health Pages. Get a copy of the report stating you had lesions on your brain MRI.  Keep all records with you.  Keep copies of everything!!  Make a file on yourself- your symptoms, your labs, your doctor visits!  
Good luck to you and all the other limbolanders and MS patients out there!!

Warmly,

Weakandfalling

Weakandfalling

[Ufrustrated2]

i'll nudge you a bit on the time line suggestion too. i had never really done one until recently. over the years,  an episode/relapse would present itself and off to the doctor i would go, then a referral to the neuro - then months pass before actually seeing the neuro.

i would only have a few notes and along with my lack of good verbal descriptions. and if i was feeling weel that day, it was even harder for me to talk of symptoms to him and i could get steered off course easily, so to speak. so this time line project is really important and really sparks some dead brain cells into remembering things. two heads are better than one to help remember past times as PastorDan suggests. for me, most buddies and such aren't around now so i've had to look up old records which has helped me with my time line.

just start jotting notes down and more will probably come to you. after some revisions you will probably notice a pattern emerging. as per Quixotic1 recommendations, keep it factual, minimal parenthetical comments. and no anecdote humorous remarks. keep a parallel time line for those and keep a straight factual one for the neuro.

hang in there