Multiple Sclerosis Forum - Do I Or Don't I

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Q: Do I Or Don't I

asked by: radar on November 2nd, 2005

New User

I'm getting really confused and frustrated. I was having periods of joint pain for about a year. The docs said it's not arthritis. Ok what is it - we don't know. My memory is horrible. My right arm and neck started to hurt alot then I started getting needles and pins. They sent me for an mri. The mri showe a mild bulging disk in my neck. They said I need to put my neck in traction 30 minutes 3 times a day. After 6 months of this it went away. About the same time the arm thing started, I started to get pains in my left side near the bottom of my ribs. The pain moved around. Front of the ribs, the back, the right side, both sides, pressure on my chest. Also I started to notice about 3months ago that I was having trouble walking a straight line and dizzy spells. Also I get electric shocks randomly every couple days that shoot down my neck to my arms. They did a cat scan on my chest. Nothing ! They did liver, kidney, and cancer screening. They did an mri on my back. (maybe I had some bad disks- nope). Last time I saw the doc he said. You seem depressed. Yup I was. Lots of family stuff going on... But there was something else I just couldn't explain. He said he wanted me to get a cardiac stress test and he wanted me to see a specialist about depression. As I was leaving he made an off hand comment that we needed to get the depression cleared up because it could be causing this. He said the next step is to mri my brain. I thought what's that about? Then he said "you might have ms". Well i'm on effexor for depression now. Mentally I feel better now, but I still hurt I still get dizzy sometimes, I still walk funny, sometimes it feels like like i'm walking like a penguin. Sometimes my head kinda just jerks. Looking at different forums I wonder if the really bad laryngeal reflux I developed 2 years ago is associated.

I just don't know.
The wife went in for her annual physical today and mentioned to her doctor that I thought I might have ms. He said "no, ms doesn't hurt".

You're the jury
what do you think

Replies(16)

aura

replied on December 17th, 2005

New User

Mri Definitely

Some of your symptoms sound quite neurological. It also sounds like a doctor thing. Do you like them? They can be so....Ms is hardly understood by neurologists! If there are lesions they can appear and disappear anywhere in the central nervous system causing any symptom you can dream of. No 2 cases are exactly alike. There are also micro lesions that go undetected. Anyway, indeed, the mri is vital but not the only test. The best person to diagnose based upon the mri is the radiologist actually. But he should also know ms well. You don't want ms. But it is better to know. I would just go ahead and get a thorough neurological evaluation. It may mean a day in hospital. But first s/he will do a physical for visible "neurological signs". Settle down if you can. If you were before, you are not alone now.

radar

replied on December 20th, 2005

New User

Thanks For the Reply

Well, since my last posting, i've been to the cardiologist because they wanted to make sure that the problems were not related to my heart. I think also because my chest has been hurting, and I have been a lifelong smoker. I quit, by the way, about 3 weeks ago. They had me do a cardiac stress test. They seemed to think that I was ok cardiac wise. They did say, at that time, that it definitely was not parkinsons or als.
I went to the rheumatologist last week. He ran some more tests and they all came out normal. He did some basic neurological testing and strongly reccommended that I go to neurology next. He volunteered that I don't have cfs or fibromyalgia. I think that he noticed some things that were unusual, but he didn't tell me about it. I personally noted a couple strange things. When he was hitting my knee for the knee-jerk reaction, my head jerked at the same time that my knee did. I said that I thought that it was strange, the doctor said he thought it was too. I also noticed that when he ran a stick across the sole of my feet something happened. I could tell that he was looking for or at something, and double checking. He kept going back and forth between my feet probably 10 times. Not sure I understand why.
Anyway, my family doctor is reviewing the results from cardiology and rheumatology. I expect that I will be hearing from him soon. I think that they could have saved some time and money by sending me straight to neurology.

Thanks for the support, and no I don't want ms, but I don need to know what is going on.

Radar

aura

replied on January 13th, 2006

New User

I Can Tell It's Hard

Yah, it sounds like a real process. It's good you're observing with the Dr.'s. It can be extremely slow or wham! Your in emergency. I've had my share of both. I've learned to keep working adapting to my circumstances, however weird, and let the process flow. Neuro problems are of the most difficult to nail. You can't even depend upon the best mri's at times. But what is sometimes missed is the obvious. I used to keep symptom journals when in the heat of huge attacks. You tend to do that because you feel your brain is being eaten away, although it is not. I have a heavy form of ms and keep recovering to a new world. But with the diary you have your own personal history in your own language. Most people should keep one really. Because you end up seeing so many specialists and your gp has a million patients only scribblings get put down. So, a medical diary with dates, hours and how you were feeling at that moment is a sure way of tracing things and seeing the similarity between a symptom a few years down the line. We tend to forget - wantingly! - about the unpleasant details or can exagerate a symptom that is not dangerous. I know I can. But having made the list, man I am happy for it. I can look back to the horrors at 35 and understand why I can be so screwed up psychologically now. It isn't my fault, although "loved ones" tend to tire and get cynical. Did I mention the book "sound mind sound body" by pelletier, md (stanford prof)? Not going to bother with spelling and syntax tonight.

radar

replied on January 19th, 2006

New User

Thanks for the support,

in my last post I said that I was awaiting a call from my gp that he had reviewed my visits from rheumatology and cardiology and had a neurology appointment scheduled. I called and left messages twice, and even got a call from his assistant saying that he hadn't forgotten me, but I never got the call that my records had been reviewed and had an appointment.

I finally got frustrated and figured out a work-around. I had been to neurology about 9 months ago for (at least what they thought at the time) a pinched nerve at the c5-6. I called for a return visit with the same neuro. They said "no problem" you have been to see him before.

Went to see the neuro last week. He put me on amitriptaline to help me sleep 'cause I keep waking up around 3am and can't get back to sleep. He also put me on xanax to "help calm my brain down.

His official dx was "multiple symptoms unable to diagnose at this time". He didn't seem to want to commit to anything at the time. To be honest I was pretty nervous and really didn't think to ask too many questions. Questions like "what do you think it is?".

The amitriptaline is really rough because I feel groggy until noon. Had to stop taking it. I work in a high paced high tech job and I can't be groggy like that.
The xanax is really helpful it seems to calm things down really well, even some of the pains go way down.

The neuro scheduled me for a brain mri on jan 23. I'm nervous, but happy at the same time.

Shooting the tube on monday !

Thanks again

radar

replied on January 24th, 2006

New User

Had the brain mri last night. I know that the mri technician is not supposed to offer any information to me regarding what was seen, but before the mri I said, "i know that you are not supposed to tell me what you see, but could you let me know if you see anything." then I said, "you don't have to tell me exactly what, just if there is anything unusual."

after it was over and as I was leaving, the tech volunteered that there were several "spots" but didn't look like they were in the right place.

I'll have to wait for the radiologist report, and the neurologist. Probably next week.

radar

replied on February 9th, 2006

New User

Post Mri

Well went to neuro last night. He spent about 20 sevonds looking at my mris, then said, "you don't have ms, there is nothing I can do for you." we talked for a while afterward. Reviewing symptoms. Then told me that I need to go back to my gp. Bottom line, he felt that something had been missed, and it almost seemed as if I was wasting his time.

Back to square 1

i hope he is right, but I still have something wrong.

My wife is being very supportive. We are both happy that it's not ms, her more than me. Primarily because I still need to know what is going with me. I'm still not so sure that the neuro looked into it carefully enough.

willpwr

replied on February 9th, 2006

New User

Pinched Nerve At the C5-6

Radar,

i've been following your posts. How did the neuro determine a pinched nerve at the c5-6? Just wondering what test he ran to determine that or did he base that diagnosis off of the mri results? In addition, how do you know it's still not that that is causing your symptoms now that you've ruled out ms. I'm just trying to get as many opinions as possible from everyone cause still to this day, I refuse to believe I have ms. I do have something though and the symptoms are ms-like. It is very frustrating and i'm constantly in a s**tty mood. My wife thinks i'm being such a jerk lately cause I just can't snap out of it.

radar

replied on February 10th, 2006

New User

C5-6

Willpwr,

i posted a reply to answer you questions, but so i'm going to do it again. Maybe a bit shorter this time.

Anyway, they did an mri of my cervical spine and, to me at least, there didn't seem to be anything obvious there, but the neuro was very convinced that it was what was causing the pain and pins and needles in my arm.

He said that he was equally convinced that the c5-6 problem was not related to the rest of my symptoms.

Your last 2 sentences are very familiar. My wife said several times "it's all in your head. Get over it.". After a year of this she believes that there is really something wrong. A few nights ago she commented that she knew that there was really something wrong. In the evening it is the worst and she has noticed how exhausted I am and how I limp and sometimes have to pull myself up the stairs.

A few nights ago we went out to red robin for burgers and I couldn't remember where how to get there. I had to ask her.

I have a problem with daytime sleepiness, so about 6 months ago I contacted the specialist at the hmo sleep center to see if there was any help. He had me go off the effexor that I take for add because he said it was sedating (i know it's not a standard treatment for add, but it really helped) anyway he put me on ridalin which was an extremely bad experience. I got super depressed and angry at the world and even considered the big s. My wife convinced me to go to quit the ridalin and get back on effexor. I feel better now, but again back to square 1.

I go back to my family doc today. Don't know where this will lead, but maybe they will have some new ideas.

Glad to answer your questions. I don't want to have ms, but to me at least it's still the only thing that makes sense.

Aura, if you're out there, I have taken your advice and created a spreadsheet that list all of my symptoms and I grade them from 0 to 3 on a daily basis. It also has a box for comments and daily specifics.

Gotta go,
radar

willpwr

replied on February 10th, 2006

New User

Radar,

thanks for the quick response, and for clarifying.. I must have missed your earlier post. Starting a spreadsheet or somekind of diary sounds like a great idea which i'll start right after posting this. You know, all day today i've been researching stuff online and it gets so frustrating cause you can literally go in circles researching this crap and never really get anywhere.. There are so many opinions, so many different sites that tell you one thing and another. Therefore, i've been trying to find the common denominator in all of this, and it seems to point more and more towards diet. In particular the elimination of saturated fats and trans fats.
Now, i'm not at that point yet where i'm ready to make a committment like avonex, interferon or whatever it is they have out there.

There is another thing that is working against me as well.. And that's the fact that I work 3rd shift so my sleep pattern is really bad. I try to sleep during the day when I get home but we have a new born baby so you know how that goes.

Thursday I have an app. With a neuro thurs, feb 16 (never been to this one yet), so we'll see what he thinks I should do. Right now my whole right side of my body is numb, and i'm having a hard time typing. Dont mean to sound like a cry-baby, but this experience can get your mood down real quick. I know what u mean about working in a high tech job, I work in telecom and cannot afford to feel groggy either....

I dont want to have ms either, but like you said, it's the only thing that makes sense!!

Let us know how it went at the family doc.
I'll post what happens on thursday.

Take care!!

Willpwr.

radar

replied on February 13th, 2006

New User

Doctor Visit Info

Willpwr,

please forgive the typos, I feel positively miserable today!

Spent a good hour with the family doc on friday. He didn't blow me off or imply that I was a hypochondriac or over-stressed.

We came to the conclusion that there are atleast 2 and possibly 3 problems. Which is why no one has been able to figure it out.

The rib pain and associated problems are probably caused by a problem with my back. Specifically the 11th thoraic vertibra. I hurt it about 12 years ago moving rocks.

He thinks that the other problems are either associated with a reaction to the blood pressure and cholesterol medication and/or a problem with adrenal insufficiency.

He had me go off the meds for a week to see if anything gets better. This is the 3rd day without the meds, and to tell the truth I think that i'm actually getting worse now. Feel like dirt today.

I guess that would imply that it is adrenal insufficiency.

Will keepo you posted.

He also supported the neuro in his diagnosis, saying that even though he spent a very small time looking at the mri, he had most probably already read the radiologist report and was just doing a quick verification.

To whoever reads this, if my family doc is right, I would strongly suggest that you do as I am doing and follow up back with your original doctor. Make them look at the issues in a different light (look outside the box is what my own doctor said).

I would also like to emphasize the symptom diary, or spreadsheet. When I showed my spreadsheet to my doc he wasvery interested and and suggested changes that would help him in diagnosing the problem.

In the end our health is in our hands!

P.S if my doc is right I will probably be dropping out of this forum soon.

Thanks for the support
radar

aura

replied on February 14th, 2006

New User

Re: C5-6

radar wrote:

willpwr,

i posted a reply to answer you questions, but so i'm going to do it again. Maybe a bit shorter this time.

Anyway, they did an mri of my cervical spine and, to me at least, there didn't seem to be anything obvious there, but the neuro was very convinced that it was what was causing the pain and pins and needles in my arm.

He said that he was equally convinced that the c5-6 problem was not related to the rest of my symptoms.

Your last 2 sentences are very familiar. My wife said several times "it's all in your head. Get over it.". After a year of this she believes that there is really something wrong. A few nights ago she commented that she knew that there was really something wrong. In the evening it is the worst and she has noticed how exhausted I am and how I limp and sometimes have to pull myself up the stairs.

A few nights ago we went out to red robin for burgers and I couldn't remember where how to get there. I had to ask her.

I have a problem with daytime sleepiness, so about 6 months ago I contacted the specialist at the hmo sleep center to see if there was any help. He had me go off the effexor that I take for add because he said it was sedating (i know it's not a standard treatment for add, but it really helped) anyway he put me on ridalin which was an extremely bad experience. I got super depressed and angry at the world and even considered the big s. My wife convinced me to go to quit the ridalin and get back on effexor. I feel better now, but again back to square 1.

I go back to my family doc today. Don't know where this will lead, but maybe they will have some new ideas.

Glad to answer your questions. I don't want to have ms, but to me at least it's still the only thing that makes sense.

Aura, if you're out there, I have taken your advice and created a spreadsheet that list all of my symptoms and I grade them from 0 to 3 on a daily basis. It also has a box for comments and daily specifics.

Gotta go,
radar

hi. Thanks. I've been in a neurological clinic and recovering from that because it was really traumatic. Anyway, indeed I agree about being conscious and objective, to take control of your own life. But it is also necessary to listen and read so that I don't confuse symptoms and can judge between the big and the small. While in hospital I learned more than I could have any other way, and went beyond the current symptom-otology, reaching back to early childhood. I realized my strengths and weakness with the background of their revalidation program which was not really suited to me. But that made it all the better to know more about who I am. I found out that my biggest problem physically was sensorial, especially involving the eyes. That is why I could not stand large gatherings and even eating with others. Too much input, and that was leading to sleeplessness which would lead to provoking other symptoms. I knew more about myself than the doctors did. But they knew more about symptomotology, having dealt personally and closely with thousands of patients. Although their natural tendency toward skepticism was sometimes unnerving - they have their own lingo in the neuro community, so always watch what terms you use! - I tried to profit from the whole experience and learned too much to express. I also realized that they genuinely wanted to succeed and not fail in making me better.

I think if a gp is so out of touch as you describe it might not be a bad a idea to interview a few others and make a choice. Whose the client? My current one is ultra nice and does not know a lot about neuro problems. But she said I could call her day or night, and that alone is good enough for me.

radar

replied on February 22nd, 2006

New User

Update

Well, went back to the gp again today, he wanted to draw some blood for aditional tests. I had done some more research since I saw him last week when he said that it might be an adrenal problem.

I came up with a strong possibility of cushings syndrome. When they drew the blood today I asked what they were testing for and the nurse said cortisol. That confirmed to me that my gp was also thinking cushings.

Anyway, when I talked with him today he also confirmed that it was a good possibility. We had a good long talk and he is very much on board with me now.

He also reviewed the previous tests done by cardiology, rheumatology, and neurology. I think that tis was because I told him that I was seeing these specialist and they weren't telling me anything, except that there are no apparent problems in their area of specialization.

He does seem to understand what the issues are and seems to be commited to making sure that a correct diagnosis is made.

Anyway, it's a step forward.

Thanks
radar

sandyallen

replied on February 22nd, 2006

Extremely eHealthy

Hi there! I am very sorry to hear about all of your problems, I understand what you are going through, I have been their and done that! My problem 1st started out with carpal tunnel syndrome in both hands and they did surgery on both to release the pressure then the problem went to my neck disc problems, pinched neves, etc., they fused c5&c6, a year later they fused c6&c7 then I started having trouble with c4&c5 but the Dr. Did not want to do anymore surgeries on me, later my dr swore up & down that I had ms test after test, then I was diagnosed with fibrmyalgia and chronic fatigue syndrome,then I fell, injuring my foot and they found out that I had rsd but after it was too late to do anything with it, so, now I fall a lot, unable to work, full body pain, go blind part of the time or my vision becomes blurry a lot, my dr still feels I have ms. A friend of mine went through 13 head mri's before they found her ms. Thei are a lot of drs that will not touch me with all of my problems and I believe now adays it has alot to do with money. I feel that I will just have to live with what I have and accept it and move on, they alsso ffound ddd and djd and rls.
The best to you and yours!

sandyallen

replied on February 22nd, 2006

Extremely eHealthy

Radar

Their are so many ssituations out that resemble ms this day and age. Their are sooo many times that I do not think no one knows, I think they just guess as we set unfortunately and wait for some answers. I do realize that this was a post from last year, I am glad that you are finding out some answers! I do hope that their is something that they can do to help you as I realize what suffering and not being able to be yourself caan be especially being young and with a family!

radar

replied on March 6th, 2006

New User

Next Guess ?

Well, the labs came in last friday. I don't have cushings disease/syndrome. The labs came back normal.

My pcp told me on friday that he was going to have a consult with an internal medicine specialist (i gather he is supposed to be some kind of great diagnostician) to see if they can come up with a plan of action.

I'm feel completely lost at this point. I'm not giving up, but I don't have a clue about what to do next.

I guess all I can do now is just wait.

It's getting hard though.

Whatever this is thats got me is not letting go. I bought a cane 3 weeks ago because my right knee was hurting so bad. Wouldn't you know it, my knee stopped hurting about that time and now its more my feet, arm and leg muscles. There is still the usual. Rib pain, upper abdominal pain, brain fog, physical and mental exhaustion, eyelids that are so swollen in the morning that they touch my glasses. I can't do anthing physical or I suffer for days.

It's like i've been out doing hard physical labor all the time without having done anything. I wake up in the morning like that, so if ido anything physical i'm wiped out for days.

I'll write again when I learn anything......

radar

replied on March 16th, 2006

New User

Finally An Answer

Well, this is my last post. It turns out that I have 2 large cysts in my left kidney. The implication is that not only is it causing problems with blood pressure, but appears to be affecting my parathyroid. This is what is causing all of my problems. I don't have a final determination yet as to what is going to be done for it, but at least I know.

To all, thank you for your support.

I strongly urge the undiagnosed to not allow yourselves to be locked into a self diagnosis. You need to keep pushing though. You need to push until there is a reasonable verifiable explaination.

Good bye
radar

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