Hi again. I wanted to add that the only med I take is LDN. (low dose Naltrexone).
There are many posts here about is (and a subgroup) or you can google it. It is a bit "alternative" but cheap and no side effects. It is a small capsule that helps your immune system help itself. It is given for many different auto immune diseases, FM and cancer. So.. You might be able to do something even without an MS diagnosis.
Sometimes it is a bit hard to find a doc to prescribe this. I would search on internet for naturopath MD that does chelation, bio identical hormones, food allergy testing etc. the visit might cost a bit, but meds are only 200-300 per year. This has given me a clearer head, no more foot drop or incontinence.
:-)

Hi Again too! I read this post just after I read your other post. This one certainly describes your neurological symptoms better than the first one. All the symptoms you have described fit in with the MS dx. However, you do need to find a MS specialist neuro and get to them. This may come from a referral from a primary care physician or not, but find one and don't give up. If a first neuro doesn't seem interested inpursuing your symptoms, then move on to another. I've seen 4 neuro's. It's not unusual to see more than one.

A good thorough neurologic exam should evalute the following: 1) 12 cranial nerves (including optic nerve) that control the senses, such as vision and touch. 2) strength and coordination. 3)sensation. 4) reflexes. 4) the presence of Lhermitte's sign.

An MRI may be ordered. If not, ask the neuro why not. I believe having an MRI is key for you. Make sure you get an MRI of your brain and spinal cord, with and without gadolinium (contrast).

An evoked potential test may be ordered. this is a recording of the central nervous system's electrical response to stimulation of specific nerve pathways that are commonly affected in MS.

If your MRI does not show any lesion activity, stress the importance of having a lumbar puncture. This allows the neuro to examine the cerebrospinal fluid that bathes your spinal cord. Often people have no lesion activity but do have oligoclonal band activity in their spinal fluids.

The blood tests are important, and can be performed either by a primary care or a neuro. Make sure that if your primary care doctor performs them, that you take the results to your neuro. Even though no definite blood tests exist for MS, blood tests can positively rule out other causes for neurologic symptoms, such as Lyme disease, collagen vascular diseases, certain hereditary disorders, and HIV/AIDS.

The hardest part of starting down the path to diagnosis is just don't get discouraged, keep fighting as you know something is wrong, and don't give up. Be sure to take your list of symptoms and how long each symptom lasted. Take a copy of this for your doctor's records too. It took me 6 years to get my dx. I never gave up, but there were times I wasn't as aggressive as I probably should have been. Early therapy intervention is so important for your future disability if it is MS.

Feel free to private message me if you have any further questions I can help you with. This is a great place to be if you are starting down the MS diagnosis path. Don't forget to watch the sub-groups here too, as there are some that could offer you more information about particular symptoms than here on the main board. (go up to the right hand top side of the page, and you will see groups - this takes you to all sub-groups under the MS Group).

I'm sorry this response is so long.

so very much for one person to deal with. but do not give up! sounds like a neurologist is the first step, but keep in mind, finding one who will take you seriously may take some time...we will all be here for you, keep us posted, stay strong and do not quit until you get the answers you deserve...many hugs, connie

You may have to kiss a lot of frogs before you find your prince so don't give up if just one neurologist says it's all in your head. Many of us have been told that only later to get a diagnosis of MS when we got to an MS specialist who knew his head from a hole in the ground. So keep fighting. We're all here to support you in your battle.

Gentle hugs, Linda

so... after a bit of thinking, I believe the very first thing you need to do is get your gut/stomach problem taken care of first. All that weight loss is not right. And a bad stomach/gut can trigger numerous other problems. have you been checked for Celiac?
I used to have lots of bowel problems. pain, bloating, gas, diarrhea (sometimes so bad I had to run to the bathroom hoping to make it which I didn't always do)
1 1/2 years ago I did food allergy testing through a Holistic MD. I tested allergic to many different things. Gluten, rice, tomatoes, orange etc. After i stopped eating these things I have no more stomach problems.

I replied on your other post regarding the gut/stomach/bowel issue, but I'd have to agree with Tonemor about starting there. Weight loss like that is not good. If your test for c diff came back negative (I know you only mentioned c diff in your other post) then continue on to see if it can be celiac, etc. IBS can present your bowel symptoms too, but follow through to make sure. I have IBS but when I got c diff it was completely different and new symptoms I'd never experienced.

I share many of your symptoms: left eyelid does open but it's droopy on the inside corner after reading awhile and becoming fatigued; tremors in hands/arms; crushing fatigue; headaches, tightness in shoulders; pain in ribcage and tightness... I have others too.

Hang in there and don't give up! Like I mentioned in my other comment in your first post, feel free to PM regarding the c diff.

Hugs~ Tracy

Hi. You have an overwhelming number of problems. I too have so many problems doctors often shut down trying to follow and advise.

I have been advised to use the following communication strategy which has worked for me. Summarize your problems by systems. For example:

Neuro system::tripping, falling, tremors in hands

Opthalmological system:: left eye delays in opening upon arising and the vision is burred,

Immunological: Positive for ebv/mono (that is herpes 6)

Auditory: hearing loss and history of infections in left ear.

Bi-polar: managed and under treatment.

Orthopedics: discomfort under rib-cage, feels like squeezing your breath out. Left leg collapses with out warnimg

The problem with reflexes, swollen lymph nodes etc is something the doctor needs to discover upon exam like these other diagnoses you have been given. Try starting with a fresh slate. In a complex case doctors can become easily overwhelmed and you run the chance of them chalking it up to psych issues. Sad but true.

Hope you see where I am going here, group symptoms by system, be factual, don't add suggested diagnoses. Let doc figure it out on their own - no bias.

Try to give a picture the dr. can see and put together. Are there meds that could be contributing to some of these problems?

Sorry you are having such a tough time Hope you get some help soon.

Melanie

PS. I always recommend Academic Medical enters to solve a complex medical problem. Living in Central Texas you have two excellent choices - UT system in Austin or Houston's systems. I just not sure what medical specialty you should see. Have you tried either?

Don't give up. With all your symptoms, you need answers. I know it has been years since seeing a neuro, so since then things may have changed enough for you to now get a diagnosis.

It is a hard fight. But insist on help. I am 11 years out from a diagnosis and still fighting to get help. So, it is not just you. Many, many people are told it is in their head and they are crazy.

If they say it is not MS then insist they guide you to someone who can diagnose you.

Best of luck hon. (((hugs)))

Hi guys!!

Sorry for getting back so late. Boys play games on computers over weekend and stay up late doing so. Usually I have very early AM time or very late PM time and this is the first I have been able to get here. So far they are still asleep, but of course they both told me to wake them up as soon as I woke up but they will have to wait a bit Im afraid. I have some new friends to talk to!

***Tonemor, Thank you so much about the advice for the LDN and the Naturopath idea. I have always considered going to a Naturopath so I will look into this. My sister has a good friend who is becoming one so maybe she can help me find a good one to go to. Also, thank you for the ideas about the costs of the visit and the meds. Money is such a big factor with my husband but you know how it is with men. They want us to be well, of course, but they also need to know instinctively that they are taking care of their families. Hard to do if your wife is constantly running to the doctor or ER because of a new illness. I feel sorry for my husband as he is a very good man (really bad Irish/German temper though!!! :) ...) Thank you for everything and I will post as things progress.

***Ichoppel-Thank you for the supportive words! Also thank you for letting me know about what kind of doc I should look for. I have a PPO so I will check and see if I can just make an appt. Sure would be nice since I do pay extra money for the PPO over an HMO. Also thank you for letting me know what the neuro exam would be like. My doc has done some of this with me before and he noticed that my left reflexes are not that good. He said he was going to get me a neuro referral but naver called me back about it. This has been many months now. Guess someone dropped the ball on that. Well My courage is up and wont let anyone in my my way. I am already getting so tired again. I only slept 3 hours last nite and that was taking Ambien and Melatonon to help sleep. I woke up as usual here lately with left eyelid refusing to open but it finally did about 45 minutes later. I have horrible vertigo (actually dxed with that) in the AM and was stumbling and losing my balance for way over an hour. Could not read anything. HORRIBLE! Well thak you again got lots of other foloks to thank!

***Ichopppel,

Thanks for writing back - I love posts where poeple actually do post andf care enough to write back. I am blessed to have friends like yall. -------- listen I gotta take a break because I can feel my self wanting to write while sleeping which means you wiill have to deal with the very weird ramblings I go into. My sons like em though! Take care and write again as I can.So byefor now I will be back later. Oh yes double vision hassarted om as will.

Ok, sorry but I do not get to the computer very often. I have 2 sons, ages 12 and 14 and they are "game crazy". One is always at the XBox and the other one is always at the computer playing games on the weekend because their dad says "no game playing during the week". Anyway, I wanted to finish responding to all of you who took the time to write me. I know I ended with Ichoppel last time and that was VERY SCARY guys! It was this morning and for the past several days when I wake early in the AM (I always do even though I take Ambien and Melatonin) I have been going through some really weird issues. Like stumbling a lot. Not being able to tell distance (ex: reaching out for the door knob and it being further away or walking into the wall next to the bathroom because it "looked" further away still) --is this something you guys experience?--this is very weird and scary. Also, I have the problems with my vision. My eyes, especially my left one, will stay shut and then open for a bit and then suddenly it is like I am looking at things halfway because they will halfway shut. It is strange because they just do this randomly. I always sit outside and smoke (yes I smoke, but I am a "responsible smoker" as I never smoke around other people and I never smoke in public areas) and read a book. Well for the past several days I have not been able to read because my eyes won't let me. Also the vertigo I experience is so severe I sometimes feel sick to my stomach and that is very unusual for me as I never throw up. So the whole experience is very unpleasant and I usually just give up and go back in to try and sleep. Today when I was trying to finish writing to Ichoppel I had already woken up for the day but as I was writing the whole eye thing, vertigo thing started again and my thoughts were weird and not staying on topic. This happens a lot also. So I just gave up. Thats why I am back. Sorry so long (this part).

******Connie, Thank you so much for your advice about seeing a neuro. Yes, I do know that I need to see one now. I was avoiding it for a long time because when I went to my doc awhile back and told him some of the things going on with me he said he would get me a referral to a neuro and call me with the info. Well, he never called and I just let it go. At the time I told him about this stuff going on (one night I got bacon out of fridge to put in micro and I stuck something else in micro and put the bacon on the floor....I then went and sat on couch and called mom and proceeded to tell her a bunch of weird stuff that made no sense...my husband grabbed the phone from me and made me lay back on the couch...I really scared him.) my doc said that it sounded as if I had a seizure. I thought that was weird because I thought seizures were physical and that you passed out. He said there were different types of seizure and he really thought I had one. He did this different tests with me, checking strength and coordination and reflexes. He was concerned because all of my left side tests were not that great. He told me my reflexes were pretty bad on the left side. So I do not know why he did not get me the referral. I plan to call him tomorrow and make sure it happens. So thanks for the encouragement and know that you and the other caring people on this forum have helped me find the strength in myself to carry this thing through.

******Linda, Hi and thanks for the support! You are right about the neuros. I have heard that they are the most arrogant and pompous of the specialists and I always thought it was the cardiologists. Well I have seen 3 cardiologists and they were very polite and actually friendly people. Very down to earth. Whereas I have been to one neuro who almost told me to my face that I was faking and when I called another one the receptionist asked me on the phone if I were diagnosed with fibro (to this day I can not figure out why she would ask me that) and when I told her yes I was she told me the doctor would not see anyone diagnosed with fibro. I told her it had nothing to do with fibro and she said it did not matter. Thats so pathetic. But my aunt had a horribly huge tumor in her head that was benign but had been growing for over 40 years and had calcified into what looked like a spider with 8 legs extending out. It was going to be a very difficult, sensitive, and serious surgery. The neuro who saw her calmed her anxiety, assured her I dont know how many times, actually talked to her on the phone instead of letting his nurse take care of it. When she had the surgery, it lasted 9 hours and the neuro made sure we were all informed what was going on every hour. She came out of it well and that surgery should have cost her thousands and thousands of dollars and that wonderful neuro did it free of charge---the entire thing---visits, tests, and the surgery. We love him! Of course he is a neuro surgeon or I would definitely be going to him. So anyway, thanks for the confidence in me and the encouragement to fight. I have lacked my fighting abilities for a long time just thinking to myself "whats the point anymore". You and the other members here have given me the spirit I need to take care of myself!

******Tracy, Thanks again! Yeah, the weight loss issue has really freaked me out but doc acted like it was no biggie. Maybe other people lose a lot of weight from diarrhea but I don't, never ever have. So yeah, it is actually a big deal. But then again, he knows I have fatty liver from taking Depakote (med for bipolar which has kept me stable for years) for so long--(actual big black box warning with Depakote that it can cause serious liver damage) and that my other docs told me I needed to take something else, I refused because I have tried everything else and nothing works like Depakote, so they told me I have about 25 years before serious damage is done such as hepatitis, cirrhosis or cancer. They actually gave me an amount of time I have left. Thats pretty scary but my doc this last time just laughed at me and told me it was probably just fatty liver from being overweight. Even though it was quite obvious to my other docs that it was NOT caused by that. I guess he does not look at a patients past records. And yes, I will do the testing for the C-Diff and the Celiac and food allergies. I will also PM you when I get results. Thanks for caring, it is really appreciated!

******Melanie, Thank you so much for all the info you have given me! My goodness I am so blessed to find friends like you and the others on this board! I wrote down every single piece of advice you gave me. I sometimes think it may be insurance. I am a medical assistant and I know about coding required for insurance purposes. Its like if you go to the doctor and you tell him I am having bad stomach cramps and diarrhea and you also tell him I am having serious migraine headaches. Well if he writes down that you have migraines and then that is coded that way and if he decides to give you meds for the diarrhea and the migraines, there will be trouble. Insurance will not pay. They will say that they coding was for migraines so why are you treating for that and for diarrhea. In other words you usually can only bring one medical issue to the office at a time. I think its completely stupid and backwards. Insurance actually ends up paying more that way because then you have to see the doc for the diarrhea and turn around a day or two later and see him for the migraines. I do not know if the docs made it that way so they benefit from extra money or if the insurance did it. I just know that is how the coding works. So when I come in with a long list of symptoms they simply do not know what to do with me.

Plus it doesnt help that I have bipolar. They all know about it and because of the horrible stigma that is on bipolar people (thanks media and hollywood) they usually think the worse. They just think I am crazy and have no idea what is wrong. It is really sad if you think about it because one of the very first things docs learn in medical school is "First do no harm". Well thats a complete joke because the ones I have seen don't seem to even care about me as a person, much less a patient needing medical attention. I really wish I could go back to the PA who first discovered my EBV and let me know I would possibly be facing a future with many autoimmune disorders including sjogrens, RA, lupus and yes, MS. He would take me seriously and he would really care. I cant see him because of my insurance. I would have to pay $100 a visit instead of $35 and there is no way we can afford that. Besides he would just have to refer me out anyway. Thanks so much for letting me know about going to UT or to Houston. Inever even thought of doing that or even that I COULD do that! I will be making phone calls tomorrow to check that out! Thanks so much for all your caring and for the time you took to write all that you did for me!

******tarabunny, Thanks so much for your sweet reply. Sometimes I wish it was as simple as finding a lump in my breast. Then I would be "respected and honored" for my sickness. I could fill my house with lovely pink things---a pink toaster, a pink coffee maker, pink sheets, pink throw pillows, special pink paint for my walls. I could wear lovely pink clothes with flowing pink ribbons, I could even drive a really cute pink car with an adorable pink ribbon on it (yes in Austin they were selling those and they sold out midday--brand new Fiats). So, all I would need to do is let my hair fall out and wear a lovely pink silk scarf and the whole of America would be falling at my feet thinking I am a super hero. Football players and the highest paying actors/actresses would bow to me. The President himself would consider me the most honorable of all Americans. I am sorry to sound off like this but it hurts me sometimes. Yes, I feel so much for breast cancer people and survivors. My best friend had breast cancer (pretty bad) and she is a 7 year survivor. But- - - -What about the children with leukemia? The children with heart disease or MD? Where are their supporters? Why dont we see toasters and special kids underwear that support them? America is very strange sometimes and sometimes I do not like it very much. I love it but I dont like it. Everything is mixed up here and priorities are really mixed up. I just hope that one day all ill people will receive the understanding and care that they deserve. No one deserves to suffer and have to face being alone in it. Sorry for the political views. I really hope you understand I just needed to vent, the bipolar stuff and now this MS stuff gets me thinking too much. Thanks so much for all you did for me. You are so sweet and caring!

Well, thats it guys! Gotta go answer on the "really long one". Then I am going to read the posts from all of you guys and see if I can answer back. I will keep my commitment to you and be your friend as you have been mine.

WOW, you have a LOT going on!!!

Generally speaking, most people can't understand what it's like to walk in our shoes, no matter how hard they try. And that's WITH a dx to back us up. Without one, it's damn near impossible to be taken seriously by freinds/family. Don't let it get to you. They mean well, but it's hard for them to understand.

As for the other stuff. You NEED a good doctor who can help you. What does your PCP say about all this? Ask for a referal to another neuro or MS center. Ask for an MRI with and without contrast. Don't accept no for an answer. If they say it's in your head, go see another doctor.

BUT, be careful not to self dx yourself to a doctor and say "I think I have MS" - that always puts the docs on the defensive. Just write down a list of your symptoms, and ask the doctor what they think it could be. Ask if MS could be in the picture but don't push too hard. Also, be careful about emphasisng pain. Unfortunately, doctors tend to see pain-suffers as drug-seekers first and patients second, so just be careful how you come off in that area.

please please please, get some help for yourself. You sound like you are suffering!

i agree with shellytab......dont tell any docs you think you have m.s......let them come to conclusion by testing and examining you.....they dont like when we tell them what we think we have and only mention pain as the last symptom on your list,,,,


ill keep you in my prayers and i hope you get the care you need....hugs to you and im sorry you suffer..i have all the nuero symptoms you have and its discouraging...but i try to be positive as much as i can.

amy

Hi Shelley and Amy,

Thank you for your replies and your very good advice. Yes, it is very sound advice because I know I have not been taken seriously many times before because I usually go in with an idea of what could be going on with me. It is so frustrating though because if you guys read Tippy's letter from yesterday----she was just diagnosed then-----she said she told her doc about fatigue and pain and he told her that fatigue and pain are NOT associated with MS. I almost keeled over right then and there! I was shocked that a neuro would have that little training in the area of MS to actually tell her that. Of course there is major fatigue and oftentimes pain associated with MS.

You see, my problem is I LOVE to do research. I research everything. I found out about the Holocaust at 10 yo and have read probably 40-50 books on it through my years and have done research on it just for my own self. Same thing with reincarnation, dung beetles, Salem Witch Trials, Yellow Fever in Colonial America in the 1700's, The Black Death in the 1400's and 1500's in Europe, and the Death Penalty in the US (which I am very much opposed to but before research was actually for). I spend hours upon hours doing research of all kinds for all kinds of material. I was in Debate in school and always the leader cuz no one wanted to do research and I did. *******Ok My point being.....It is very, very hard for me to go to the docs and basically act like I know nothing about what I am there for. My Internal med doc who is my PCP understands the research thing since he is just like me. He actually asks my opinion sometimes. My pdoc who sees me for my bipolar is a very strict man when it comes to drugs but he tells me he has respect for me because I do so much research on bipolar and instinctively know my body so well as to know 100% of the time when I am becoming hypo---which leads to manic; or sad---which leads to depression. So when I see him I just tell him what I think I am needing to take as far as meds and he approves it. I can call him on the phone and without getting an appt. I can get a sleeping med. This is because of his respect for me. He knows I absolutely do not abuse any drugs (I will actually just take the sleeping med for about a week until my sleep cycle is evened out and then toss the rest )

So anyway, I would like to have that kind of relationship with this MS Specialist since I figure we will be seeing each other for awhile anyway just to go through the aggravatingly long process of either getting a dx or being told to "hit the road and dont look back". I will say this much, I will not say I have done "research". I will not mention the internet. I will have a list of every single one of the symptoms that bother me, even if it seems like it has absolutely nothing to do with MS. I am really hoping in a very sicko strange way that I actually DO have MS. The other alternatives are not very nice at all. Especially since I had a very bad head injury in 2/11. Fell and bounced 2 times on the back of my head (docs said that was a "death blow" I suffered) and 1 time on the left side of my face and head. Rushed to ER where my scalp was stapled and had CT scan. Said head was good. They were very busy that day and did not take time to look at my feet which were also messed up. Found out later that my left foot had two really long and bad fractures in it. So now docs think there could be an issue with that head wound especially since I had another one about 4 years before where I fell flat on my face and broke my nose and broke out top 3 teeth. Both times had bad concussions but stayed at home for them.

I wont dx myself. I wont talk about stats. It will be hard. but I promise you guys I will restrain myself. Who knows maybe Im nothing more than a hypochondriac. I mean arent those people supposed to actually have real pain? That would suk if I did. More therapy. But at least I would not suffer any more. I am just so ready for anything to make this all better! Thank you!!!! Irish