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ms symptoms with no diagnosis

Cindy10
2 Recommendations

Hi ...I need to join this discussion because of being very frustrated with symptoms and specialists. I have a history of hemi-facial spasms and trigeminal neuralgia ,for which I have had cranial nerve surgery,severe RLS , that is kept under control with mirapex. As if that weren't enough ,I have been plagued with ms symptoms the last couple of years.My neurologist is a Godsend and takes me very seriously. He has done testing,which were normal results.Sending me to an ms specialist was very recomended by him.This is the second specialist I have seen in a year,that had no time for me.They didn't even examine me. Had resident doctors do their work,glance over old test results and dismiss me.Literally in tears,I mention that some days are such a struggle for me , that I feel as though I am flying under the radar.Since test results are only 80 to 90 % accurate,to be sent away with no interest ,is very devastating. I am so tired of being sick and tired,and I know I am not alone....So if anyone want's to talk,I am here!!!!

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Exercise Cancer Surgery Motrin Acid reflux Nexium Weight loss surgery Morphine Copaxone Tegretol Fibromyalgia Effexor Urinary tract infections Stress Tremor Avonex Advil Yeast infections Stroke Multiple sclerosis Fever BAER Weakness Pain Memory Insomnia Depression Trigeminal neuralgia

39 replies

browneyedsusan

Hi Cindy,
I'm sorry to hear you're feeling lousy. I have MS and know how it is to feel sick and tire of being sick and tired!
Here's my regular email address if you would like to email
www.goodhealthwaters@yahoo.com
Perhaps I could offer you some suggestions or just support.
Good luck
Sue

Rachel4

Hi,

If you think you may have MS, then, make sure you not only get an MRI, but also, a spinal tap. And, it looks as if you may have to keep trying to get a neurologist to listen to you.

If you watch tv, there's a program "Montel Williams Show" where Montel had to visit dozens of specialists before he got a proper MS diagnosis, and then, of course, a proper treatment.

When a specialist has no time to discuss vital issues with you, then, you must speak up and tell him that you are dissatisfied with your visit with him/her. Don't let them get away with it. They're getting paid enough - keep telling these specialists, that you'll need another opinion because you have patient rights and they have doctor responsibilities.

Don't give up

Rachel

lorilu4453

Hi all,


I am attempting to get a diagnosis also. My sister has MS (she is 16 years older than I am) and she was just diagnosed 2 years ago. In order to verify MS, she had an MRI, a spinal tap AND an evoked potentials test. The test stimulates different nerves to see if there is a "break" in the nerve impulses in the brain to different parts of the body. This is the test for her, that confirmed her diagnosis.


I went to my neurologist last week - I have been seeing him for migraines for 7 or 8 years. He knows I have symptoms of Fibromyalgia, but tried to explain away any of the other symptoms I told him about. I told him that I KNOW that heat intolerance is not a symptom of Fibromyalgia and that I have been feeling extremely tired, I fatigue easily, I can't concentrate, I am extremely forgetful and my feet and hands tingle constantly. I also told him that my primary care doctor tried to order an MRI for me because of my symptoms and the fact that my sister has MS. He finally said "I think it would be a good idea to get an MRI." I finally have an MRI scheduled.



Even if I don't have MS, I am going to change neurologists. It was too frustrating trying to tell him my symptoms and have him try to dismiss them instead of asking me pertinent questions about my symptoms. My husband keeps telling me that the doctors work for us - we have the right to push for the tests and treatments we know we need. Check with your local MS organizations to see if they can recommend a "MS-friendly" doctor. I have found a couple doctors in the Phoenix area that I am going to try.


And thanks, Rachel, for your information about Montel. I knew he had MS, but didn't know his story. It helps to know there are others who had to struggle and gives me the strength to keep on pushing.


My thoughts and prayers are with you Cindy and all of us trying to find what is wrong with us!! Keep the faith and God bless.


Lori
Phoenix AZ

peanutbggrl

I don't have ms but i know a few people that have it and plus my sister with it and i watch people that i know but they all try to be stong and kep a postive attitude which can be hard sometimes and they manage but i see they have feelingand they tryto hide it and scared also but they keep fighting and with doctors causewhere i live there'sno good doctor or do they care. I know what it'slike going to a specialist ad they don't even check you out like ut and think's all i your head but even though you have the results they treat you like you don't know any thing i've been to many speciallist aboutmy spineand my bones and theyact like your makig it up welliwentback many times to my doctor and told him what was going on but he didnn't any thing so i wrote the specialist and never got a reply and still my doctor would do anything for meso i fiqured that i would get an second apioion ad get the other doctor to do tests that should of been done ahd told them i wanted them done and my medical pays foritso do it and they did and i found out it got worse and more problems which is not good newsbut i had to fight with them to do it and and my doctor whe he got back still did;t do anything so i was mad andwonder who else goes through this but i learned there is so many doctors that are treating people with disrespect and make you feel you don't know whats going on you can get yourmedial records and keep them for yourself and make copes so that if you want another opinion you can show them but you shouldn't have to go through thatno oe should and you should tell them hey checkme out properly or if something happens that you will go over their heads and you shouldand get another opinion remeber your their boss and theyhave to do what you want and if you feel they aren't givig the treatment tellt hem so and fight back your the boss of them other wise they don't get paid from you if you fid some one else and i always prayed at least some listens and undrstand maybe i won't gett healed butmaybe pointme inthe right direction even to find theright doctor it always helps me and it takes time if you feel to do so that swhy we have medical and pay these doctorsto do thier jobs so stand upad speak and let them know and i hope you will find the one specialist that will help you and have some respect of what your going through i know my sisterhad tofight fora log time and she didn't give up she had to keep fighting adn she finnally got a doctorto help her and i hopeyou will too stay positive

Mikeangel2

Cindy,
I have had MS symptoms for 22 years that come and go. I have been told by optometrists, and opthalmologists that I have nerve damage and discs that look like I have MS. I have gone through several MRIs,CAT scans, EEGs, EMGs, and a spinal tap. They still say I am normal. I am frustrated also. They act like we are imagining these things. Some have time to talk and others act like we are crazy. My left side is weak, my bladder is "hyperactive". No one wants to have MS, but why can't the doctors be more understanding wiht us and try to find out what is wrong. I would like doctors to BE honest, tell what is going on with my body and put me on meds if necessary.

I noticed further in the discussion board that someone else had some bladder problems. See if the doctor can give ou Ditropan (controls muslce spasms and allows you to void frequently). The bladder problems can also cause more urinary tract infections, and if a woman, more yeast infections.

God bless you!!!Luck in a diagnosis

Janna

Cindy10

Hi Lori,I agree with discussing your symptoms to a neuro and being dismissed. Last visit with this so called ms specialist was the biggest joke and let down. I drove two hours to see this man and he barely gave me the time of day,plus he had some resident dr. do the exam. He was no where around. I must tell you my regular neuro is great. Unfortunately his hands are tied.He knows I am struggling,takes me very seriously and has ordered the appropriate tests. All my tests were in the normal range incl. the so called unspecifiic white spots.Now,depending what neuro you talk to,none of these test's are accurate,ranging anywhere from 80 to 85%.Beings the trickiness of this disease, that is what makes it so hard to diagnose. That is why my neuro sent me to this specialist. Not to look over old test results,or have some one else examine me but to help me find some answers. As I sat in tears and listened to him for the lousy 5 minutes he gave,no matter how I tried to explain..he shot me down.As I was leaving feeling so defeated, I looked at him and said,just because I am not in a whhelchair,doesn't mean I am not suffering in one way or another with these symptoms.I told him I felt valuable time was being lost and I am in this limbo.....He looked at me and said point blank....prove me wrong......Shouldn't he have taken an active interest and tried to prove me wrong. Being in a large neuro-science center with everything at his fingertips,he offered me nothing.....It sounds as though we are truly going through the same thing,flying under the radar, and one day just hoping to get an answer and the appropriate medical care we need.Even if your MRI is within normal range,that doesn't prove you don't have ms,It is when it is positive that it proves you do.That is the trickiness...There are no specific ms tests,but if your ms is in a region that can be picked up by these tests,all for the better for people who need help. But what about the ones where it isn't rearing it's ugly head yet. it could take years,and that is sad.....esp. when all we need is a neurologist who truly takes his hypocratic oath seriously.I hope you find your answers.....Good luck,God bless and let me know

Cindy10

Hi Janna,The sad part is you could have been helped long ago.I say the same thing to you as I said to Lori. You are another poor soul looking for answers and it is a crying shame. Please read my response to Lori's comment ,and you will see how truly sad it is and how many of us are being dismissed because of a tricky disease.Thank you and God Bless ,Let me know how you are feeling..

Cindy10

I hope you also stay positive and get the help you need.....

Karenv610

Cindy,

And I thought I was alone... I too have been dealing with symptoms of MS and have yet to get a diagnosis.

my symptoms are: really bad head pains (they come out of nowhere and when they ease up they still linger), eyes hurt to the touch most of the time, eyes hurt when I move them, occasional strange numbness on different parts of my body and even on my tongue, weird hot spots on my skin (almost like I have a fever on my right arm and face), heart palpitations, difficulty remembering something I had done minutes ago, muscle spasms in my back and spinal pain that was so bad I went to the ER, insomnia, exhaustion... I'm sure I am forgetting something but thats the bulk of it.

I can understand how frustrating this can be. In late January, I began having problems with the vision in my right eye .. and it quickly progressed within a few weeks from the first day... I began seeing an opthamologist who in turn sent me for an MRI (in February) since he couldnt see anything wrong with the eye itself... that was when they found about 6 lesions, small but they were visible... then I went to an actual MS specialist (in March) who is with the MS foundation of Central Florida... sadly he was not very nice, had no bedside manner, no empathy and pretty much passed me off to a neuro-opthamologist. I was running out of health insurance soon after so I had to try and find someone myself... (especially since that ms specialist just rambled off names and places... not really referring me to anyone in particular. Luckily (in April) I found an organization that helps to rehabilitate people so they can return to the workforce... they got me an appointment (in May) with a neuro-opthamologist who sent me out for blood work to try and rule out other diseases... they came back negative... so he suggested I get a VEP test done (visual evoked potential). (now June) So another appointment... this time with a neurologist... He is great! He is taking everything I tell him seriously. He sent me for 3 tests: VEP, BAER and a spinal tap. And even though the tests came back negative/inconclusive again... he suggested we treat this as though it were MS. He did this becasue he feels that "clinically" I do have MS. (Mind you I am still beign helped by the organization that I found a few months ago) The neurologist is having me do a trial run of IV Corticosteroids as well as a trial run of Copaxone. Plus, at my neurologists request, I'm having an MRI of my neck done to see if the MS shows up there and going for a 2nd opinion with another MS specialist.

It is now July and I have an appointment to learn how to inject myself with the Copaxone. And hopefully I can get the IV Steroids and the MRI done this month. My fingers are crossed.

The waiting is so frustrating I know... but I did alot of research on this disease and it sometimes takes years to diagnose. I hope that Cindy and the rest of us can get some answers soon! I hope this helps everyone reading this.

missmatic

Anyone with these symptoms who has had root canal therapy before onset should seriously look into the possibility of that being a cause and to the whole issue of toxicity associated with certain dental practices. They should not ask any dentist for answers about this but should do their own research and decide for themselves. There are a few organizations that can help with finding a knowlegable dentist and with providing information on the subject. I don't assume this is the cause of everyone's MS symptoms but am aware that some people with similar symptoms developed them shortly after root canal therapy and reported their symptoms were relieved by having the tooth pulled.

missmatic

I urge you to write down every detail you can remember of that appointment with the neurologist that you described and file a complaint with your insurance carrier, and the clinic and/or the state agency that licenses doctors. Ask them about procedures for that. It will not recover your valuable time but these doctors who abuse the privalege of their positions and get paid to do so need a reminder of what their responsibility is and that harming and neglecting patients in pain is not what they are paid to do. It's not ethical either, but they know they can get away with it, sometimes even with the assistance of colleagues who don't want to get them in trouble by proving you right. "Prove me wrong." Someone in charge needs to hear those words spoken to you and be reminded that it's not your job to prove him wrong, but his job to prove himself right or wrong in helping you find a diagnosis, regardless of his prejudices.

Mikeangel2

Hi Cindy and all,

Well, as I said before, I have had symptoms for 22 years. BUT, this summer seems to be the very worst. I have heard about people saying hot showers bother them. Well, yesterday I took my usual hot shower and my arms felt like they weighed a ton. My legs were also like stumps. All day yesterday and for a few days, I felt like I was going over, balance was bad. My point is this....strange that these things never bothered me that much before....after 22 years I am having major problems here. Vision is getting worse. When I look back in the past few weeks about my left eye with the "comlplex nerve damage" and my left eye that has been hurting a lot more lately. My left leg is hurting quite a bit. My hands are numb, I am dropping things daily.I have fluffed this off for years because "the symtoms were not that bad" and they came and went, and I hated going to the doctors who were rude to me and acted like it was inm y head.

Now, I am either getting scared or fighting mad. I have an appointment on Friday aof this week. A new family doctor. I am going to write down, and also search my records from years ago. I am going to make a LIST of exactly what I have been told by other doctors..hyperactive bladder,
left sideded weakness, intention tremor, nerve damage in the left eye (by 2 optometrists and 2 medical doctors). THEN, I plan to ask him to put all of these together and tell me, if it is NOT MS, what is it? I don't want sugar coating, "it's all in my head" For ONCE I want someone to be honest with me. NEXT week I see the eye specialist again and I plan to let him know my other symptoms, not just with the eye...He's at one of the better medical centers in the U.S. and if hecan't find out what is wrong with me.....He'd better send me to someone who will.

I have always felt pretty brave and good about , Maybe it isn't MS. But something is going on here and I want and need to know. I just turned 55 and I am getting grouch in my old age(lol). Time is too short to fool around and wait. I want to feel better so that when I retire I can travel and see things a little.

All of us need to "hang in there" Don't give up and want to end life. just fight to make sure that our lives have some quality and dignity.

God bless you,
Janna

Karenv610

Missmatic, Yes I've heard about that too. But fortunately I've never had to have a root canal...

Joni3

Wow what you said is scary. I have had alot of fillings done when I was younger. They were done with mercury. I have broken one and the filling is exposed more. It became infected and I was put on antibiotics. The dentist told me that I now need a root canal. I have been putting it of because of all of my MS problems and the money it costs. Maybe I should just have it pulled.

I need to look into it more. I have had toxicity tests done and I do test positive chromium, lead and thiomersal. If you are interested in my results, I can fax them to you. My doctor sends me all of my test results since I have been seeing him. Which is about 22 years. He does all kinds of special testing and will be dept. head at the Univ. of Nv Reno when the new immunoligy/cancer center is built. It will be the only one of its kind. He really wants to help find a cure for MS, CFS and Fibromyalgia.

Sincerely,

Joni

missmatic

Karen,

I am having different symptoms but more or less the same problem and have been through years of what you are experiencing with doctors. Some doctors will work with you and some won't and they are the biggest waste of time. I recommend walking out on the ones who have no time for you, since you shouldn't waste any more of your own time, let them know why and report them to the clinic or your insurance carrier. (Diagnosing without taking a proper history/diagnosing without testing...something along those lines).
Do as much research on your symptoms as possible - I think infections might be the new frontier for some diseases. Look into ME on the website www.ahummingbirdsguide.com.
It might not be what you have but might be helpful in sorting through your own situation. Call the MS official foundations and get information. Are you sure it's MS? Could it be a similar disease or a non-specific or other immune disorder. If you could get a doctor to give you some very specific tests that would narrow down the diagnosis it would help you a lot. The right tests are essential. Sometimes tests are only available from a few particular labs and not the ones your insurance normally works with. They might require authorization. Labs have tech. support that can explain the the meaning of the tests and test results to any doctor, so if a doctor is willing to work with a lab, he or she doesn't need to be thoroughly knowledgable necessarily. Make sure all the neurological exams and tests that have been done make sense in terms of your symptoms and your own gut feeling and see if there are any others you feel you need.

Pamela

missmatic

Joni,

I would personally not get another root canal. I have 10 and became very ill during the last one with symtoms of bacteremia that I could not get diagnosed at the time. It seriously affected my already fragile health. I've read and been told that mixed metals act like a battery and are worse than mercury alone in the mouth. I still have mercury and many crowns so my whole mouth is a hazardous, toxic waste site.

Yes, maybe we can compare toxic reports. I've had two this year and would be happy to share mine with you when I have a little more time and can figure out off-site how to handle the e-mail/fax # exchange.The first was a DSMA challenge test and the second a hair test from Doctorsdata lab.

How fortunate you are to have found such a good doctor where you live. I am having some difficulty in regard to my new doctor's knowledge base and willingness possibly, to venture beyond his normal base and get me the tests I'm asking for. At this point time will tell.

Pamela

CuriousGeorge9971

It is hard. But your not alone there are so many people out there with ms and no diagnosis a lot of suspicions but still hanging in there. I am one of them. My husband died tragically 2ys and 9 months ago from a fall. I have a 11 yr. old son with ADHD, Bipolar and OCD. We had a business that was self supporting and a stepson who made it all go away. Left me and our son to find our own way with all the bills, mortgage and everything else. Then I have to deal with this garbage. So you are not alone. I hate living with uncertainty we all do even the struggle. But I thought of it this way it may help you it helps me most of the time #1) You are the best thing in the world for your family you are irreplaceable trust me I see the struggles my son goes thru. #2) Keep pushing it makes our children and our families stronger by showing that we will conquer what ever is thrown our way. #3) Your symptoms are real we all know how you feel. Sometimes I sit and cry because of the pain I take two Excedrin and keep going because that is the choice I made. Part in because the stepchilden were going to make sure we were on the street. I have struggled to make them liars and eat their words.

CuriousGeorge9971

Sorry hit the wrong button. Part #2 of #1. What I am saying is don't give up. Sometimes it takes a while to get diagnosed. Get a second, third or forth opinion or more it you have to. You are the one that feels lousy. Fight! I am not saying that your doctor is not good but you still like are the one who must deal with this everyday not him/her. Just because the test can't answer that you have or don't have MS doesn't mean that you don't there is no one test that can answer that one question. The doctors only respond with" the tests don't show us what we need to be able to treat you". And they never will. It is up to the doctor who feels compforable with his or her decision to treat. I know that you like your doctor but with all the stress of uncertainty wouldn't you prefer to feel better. The people on this web site taught me that patience is a virtue. But if you want to feel better you and you alone must make sure that happens. MS of Washington has a web site at Multiplesclerosis.com. Montel Williams is at Montelms.org. There are so many you will see that you are not alone and that many are in the same situation. I am doing this and you can too!

Cindy10

Thank you for your advice.You are so right. If no-one speaks up they will continue to practice in their cold and unconcerning ways. They need to have an attitude adjustment.........I will keep you informed........Take care,Cindy

Cindy10

Janna, I hope you are not scared but fighting mad....You go girl,give them hell.Good luck,maybe this time will be a charm,Take care, Cindy

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