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Old 07-31-2005, 11:43 AM   #1
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shellymay HB User
Exclamation What to do about no diagnosis?

Hi,

What do the neurologist do when your MRI's are negative and your evoked potential test are negative, and bloodwork is negative, but your ENG was positive for brain not sending signals right. I'm getting kind of worried. I have been having symptoms for 8 months now and I have been to 2 neurologist and I have an appointment with a 3rd neurologist that is a specialist on MS at a highly ranked hospital. But what if he too says that all my test are negative? I can't drive, I can't work because I am too dizzy, can't do repetitious movements, can't stand or sit for long periods of time, legs always hurt especially calves, knees and ankles, toes go numb and turn blue and hands starting to do this, I also have a continuous headache. I have more symptoms but won't go into them. I'm deathly afraid that the doctor is going to say I can't find anything wrong and make me go back to work, which I can't do. When I did try to go back to work, my symptoms seemed to bother me more and I would also have panic attacks worrying about what was happening to me. Will the neurologist diagnose you with say Fibromyalgia, being he can't find so called proof of MS, so that I can apply for Disability? I can't work but we need money coming in to live. Is anyone else in this dilemna? If so, what are you doing? Why won't these doctors believe us?

Michelle

 
Old 07-31-2005, 01:10 PM   #2
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Ruth1 HB User
Re: What to do about no diagnosis?

Hi ShellyMay,

I don't have much advice to off you as I am going through the same thing right now. You are just a few steps ahead of me. I am about to go for a second opinion from another neuorolgist and if he says nothing is wrong with me then I will ask to be referred to a MS specialist. It seems to be hard for people to get diagnosed as there is no definite tests to say " Yes, you have MS". I often miss days at work and struggle to make it through the day. While in meetings I can feel the dizziness taking over and I just hope that I never actually pass out!!! I have 2 teenage daughters and I try to make sure one of them is home with me because I always feel "bad". That only works so much as they want to be out with friends, etc....

The most I could say is you are not alone. I feel exactly the same as you do! I thought I was reading my post but it was yours....

Hang in there and keep pushing!!

Ruth
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Old 07-31-2005, 02:51 PM   #3
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Re: What to do about no diagnosis?

Ruth1,

Thank you for your post. Isn't it hard to be sitting in those meetings and getting the dizzy feeling? I am the same way and just hope that I don't pass out. It is so scary!!! That's when I start having a panic attack. Do you have these? I too have a 16 year old daughter and it is not fair to make her stay home just because I don't feel well. She also wants to go shopping with me and I just haven't been able to. It's so hard!!! It helps to talk with someone that is going through the same thing you are. Have you had any test and are any positive? Thank you for the vote of confidence. I will try to hang in there and I hope that you do the same. Give us an update when you go to the second neurologist. Thanks again!!

Michelle

 
Old 07-31-2005, 07:58 PM   #4
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Re: What to do about no diagnosis?

Shelly,

I have been going through alot too in the past 10 months now. I work full time and have 5 children. I dont have the dizziness though thank goodness. Just the fatigue, ON in both eyes and bad spasms. The numbness, burning and vibrations usually dont hit till later in the day. Luckily my work day is almost over by then. I have missed alot of work but I am lucky to work for a very understanding company and they have seen me come in when I am barely able to walk.

Erin

 
Old 07-31-2005, 08:16 PM   #5
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Re: What to do about no diagnosis?

Estevens64,

So, you are continuing to work, I'm sure that is very hard to do. Not to say that the symptoms that you are going through aren't bad, but out of all of my symptoms the dizziness and lightheadedness bothers me the most. Sometimes it gets so bad I can't even move my eyes for feeling like I am going to pass out or fall over. It's horrible. Driving is absolutely out of the question. My daughter told me the other day that she can always tell when I am dizzy because when I drive I am continuously pulling to one side. I have drove maybe one time in the last 3 months. It is too scary. I am glad that you have an understanding company to work for. The place that I work for I am continuously standing and doing repetitious movements. I am a floor supervisor at a grocery store. It is tough work, especially for someone with the symptoms that we have. Do you have a standing or sitting job? The vibrations that you are talking about, what do they feel like? I have just started having these feelings in my fingers and calves where it feels like something is in them moving around it's like a rippling feeling. Is this what you are talking about? What do we do if we don't get a diagnosis? Don't we have to have some kind of diagnosis before we can apply for Social Security Disability? It's ashame that you have to continue to work feeling the way you do. There has got to be something that can be done and when I go to talk with this MS Specialist I am going to ask him. Thanks for your post and I will pray for you!!

Michelle

 
Old 07-31-2005, 09:55 PM   #6
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Re: What to do about no diagnosis?

OMG i am in the same boat as u are i have not been able to work since the first of march. Though i do not have the dizziness like u do my has been dibilitating fatigue as well as aching calves and the vibrating feelings. For the last 4 days the back of my neck has constently hurt and has a burning feeling in it as well i have headaches. I have not been diagnosed with anything yet, but have been this way with other symptoms for several years they just seem to be getting worse I will be glad when the dr.s do find out what is wrong with me i know this is not all in my head. I used to be a very active person i have three kids who all are very active in sports and camping i am not as able to follow as i used to be , that is why i know i am "sick" i feel like just giving up some days and just try and live with it, but some days i feel i need medical help. Good luck with you

 
Old 07-31-2005, 11:31 PM   #7
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shellymay HB User
Re: What to do about no diagnosis?

jazamac5,

Sorry to hear that you are going through the same thing. I hope that the doctors do find out what is wrong with you. Are you on any kind of disability? Looks like to me if the doctors can't find out what is wrong with you then they should be able to diagnose you with something so that we can at least have some form of life and have some kind of income. I know that it is hard to diagnose MS, but in the meantime while we wait for a lesion to show up, they should be able to help us out. Not all of us are rich to where we don't need our income. I know that something is wrong with me also, and we are just going to have to be adament about it and persistent and let the doctor know that we aren't going to sit back and hear that we are depressed or they can't seem to find anything when we know something is wrong. Does the doctor really think that I like being couped up in my house in pain? Keep in touch and again I am sorry for the way that you are feeling. I hope that it gets better.

Michelle

 
Old 08-01-2005, 02:16 AM   #8
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Re: What to do about no diagnosis?

Hi Michelle

We spoke before, I am the one who was dx recently with CFS/ME? I am really finding it hard to come to terms with all my test's came back negative apart from a few tests ie walking straight (no chance) and the feet one (no movement) weakness in my legs and arms (no strength) I was under one Neuro who wanted me to see his friend for a second opinion as he was confinsed that although the LP came back negative that is was probable MS and that I defo had a problem with my central nervous system! I am a bit annoyed really... as all my MRI's was done without any contrast, I couldnt wait for the NHS I paid to have them done myself to get them done quicker!!! when you read the postings most people have it done with the contrast as it shows up more? When he sent me for the spine I thought he would have asked for the contrast dye but he did not? as lesions on the spine can hide (so I have read?) I have also read that the easy option is to dx with me/cfs when all tests have come back negative because they don't know what else to do or there are no other tests to do. I feel as though I have been left in the dark, they never talk to you about the blood tests or results that come back so you never know if there is a slight abnormal problem with any of them...as they don't like to discuss anything with you. I find it very hard to except as I cant see how a Neuro can say that with History and if the VEP test comes back abnormal he would dx with MS then to not look at them and just take a phone call from a secretary then change his mind within a second to " well its normal so were go with ME/CFS? I think I would excepted it better if he had said well were stick with probable and keep an eye on you and have more tests done later in the year or so?
So here I am like you not been able to get back to work, not knowing what the next day is going to be like and having the extra stress of wanting to go back to work as we need the money!! I have even brought myslef a walking stick to keep my balance which does help. I cant drive and have not sinced last November when this relaspe started, over the last 5 years things would happen but they just went away on their own accord.....but not this time!! anyway I decided a few months ago that I was just going to except my fate and not pursue anymore, but after reading some of the posts on this website I have decided that I would try and find another neuro who specializes in MS and try once more just to make sure!!
making sure I have the contrast dye will be a start!! I am sure they do it to save money. sorry enough moaning-on....keep going, and fight the good fight...so they say!

all the best Vicky

 
Old 08-01-2005, 03:55 AM   #9
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Re: What to do about no diagnosis?

Folks, even though my neuro is very responsive and we keep doing tests I have resigned myself to not having a dx in the near future. seems like MS and things that mimic it can remain elusive for years. But she IS trying to treat my symptoms. Aren't any of your drs trying to help you FEEL better?

 
Old 08-01-2005, 10:08 AM   #10
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shellymay HB User
Re: What to do about no diagnosis?

fuzzymuzzy,

Thank you for your reply. Sorry to hear about what you are going through also. With being diagnosed with CFS can you get disability? It's amazing how many of us are going through the same thing with the same symptoms. Good luck with a neurologist and yes get the MRI's with contrast. The only MRI I have had with contrast is for my brain. When I had the MRI for my neck and spine I didn't have contrast. Maybe I should try that also. You keep fighting also we are women hear us ROAR!!!

Michelle

 
Old 08-01-2005, 10:12 AM   #11
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Re: What to do about no diagnosis?

lilc,
Sounds like you have a good neurologist. I take it she is a woman being you said she is trying to treat your symptoms. Make sense women are so much more thorough and listen more attentively. I wish that I could find a woman neurologist. As for the answer to your question, No, they are not trying to treat my symptoms with anything. I have been going through this for almost 9 months now. Sounds like you have a great neurologist, keep her. Thanks for your post and keep in touch!!

Michelle

 
Old 08-01-2005, 10:45 AM   #12
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Re: What to do about no diagnosis?

Quote:
Originally Posted by shellymay
Estevens64, So, you are continuing to work, I'm sure that is very hard to do. Not to say that the symptoms that you are going through aren't bad, but out of all of my symptoms the dizziness and lightheadedness bothers me the most. Sometimes it gets so bad I can't even move my eyes for feeling like I am going to pass out or fall over. It's horrible. Driving is absolutely out of the question. My daughter told me the other day that she can always tell when I am dizzy because when I drive I am continuously pulling to one side. I have drove maybe one time in the last 3 months. It is too scary. I am glad that you have an understanding company to work for. The place that I work for I am continuously standing and doing repetitious movements. I am a floor supervisor at a grocery store. It is tough work, especially for someone with the symptoms that we have. Do you have a standing or sitting job? The vibrations that you are talking about, what do they feel like? I have just started having these feelings in my fingers and calves where it feels like something is in them moving around it's like a rippling feeling. Is this what you are talking about? What do we do if we don't get a diagnosis? Don't we have to have some kind of diagnosis before we can apply for Social Security Disability? It's ashame that you have to continue to work feeling the way you do. There has got to be something that can be done and when I go to talk with this MS Specialist I am going to ask him. Thanks for your post and I will pray for you!!

Michelle
I am working full time. I have to.. not working just isnt an option. Plus I WANT to. So I push myself to the brink but it is the one thing that makes me continue to feel whole if that makes any sense. I would be miserable if I couldnt come to work. I work sitting down. My coworkers are aware of my problems. It would be hard for them not to be. On really bad days they give me a runner to get my faxes and mail and such. My job is sitting down. I am an insurance underwriter.

The vibrations dont feel like rippling...they feel just like vibrations. It feels like my leg is vibrating. Sometimes I am not sure if it is me when it is in my feet and will ask if anyone else can feel the floor vibrate. I finally stopped since it was always just me felling it.

I have felt the rippling too...but that is only when I am laying in bed.

Erin

 
Old 08-01-2005, 12:29 PM   #13
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fuzzymuzzy HB User
Re: What to do about no diagnosis?

Hi Michelle, I only get incapacity Benefit which is something better then nothing. I was told that I could go for Disability Living Allowance but I really don't think I would get it so I did not apply for it.. plus I thought I would be back to work a lot quicker then I thought, silly me!! I have only just got some tablets from my neuro "selegilene" not much change...just a little less buzzing in the legs etc and not so many electric shocks!!

 
Old 08-01-2005, 02:53 PM   #14
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Re: What to do about no diagnosis?

I'm feeling a little weird today, but I'd bet you all can understand. I'm actually HAPPY that my neuro informed me she (yes, female neuro, I am blessed) is convinced my symptoms are due to demyelinating disease. It's funny, it was at least 3/4 through our conversation before she actually said "MS", even after talking about starting medication and all. I guess some of them would prefer to wait as long as possible before saying such dreaded words, but I found it to be a relief!
She had apparently called the lab and ordered an additional test on my CSF after my LP and that test was positive. My MRI has small lesions. My EVPs were perfect. So she's just looking for a relapsing/remitting pattern for the clinical piece of a dx.
I am grateful that she has been so agressive with the tests, and that she never dismissed my reported symptoms. She wants to do another MRI in a few months, and I'm to see her again in 4 weeks, sooner if other symptoms come up. She says it is "mild", and I certainly agree as I am still working and doing most of what I was doing when this hit (at a slower pace).
Next time I see her I will ask what that additional test was and will let you know. And I'll keep praying for you all!

 
Old 08-01-2005, 04:17 PM   #15
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Re: What to do about no diagnosis?

Lilc.... it isnt strange at all. I would feel relief too...just to KNOW what is going on and to be able to finally get treatment.

Erin

 
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