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Old 06-27-2013, 12:34 PM   #1
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Lightbulb Doctor says I am not a Medical text-book case so I am dismissed

Hello, I am still searching for my diagnosis. I have had somethingís ruled out. I was given Fibromyalgia and OA. However I do not believe what I experience every day is causing this extreme pain, weakness, and fatigue I am going through. I do have some other thing wrong with me that I have under control, but there is something going on here. I donít want to step on anyoneís toes here but I need to talk to someone. I have been to see a MS specialist however I believe he was a joke. All he did was give me a neurology examine the same exact examine I had at my internal medicine visits. I feel nobody is listening to me!!! the doctors look at me and say you are not a book case so you must be lying about your symptoms. I am so tired of going to doctors and telling them all of my symptoms over and over again. I have MS symptoms. I would love for someone who has MS to talk to me about this so I could understand it better. I have asked for a MRI but have not got another one done again with contrast just without in feb. I feel this is something they should really look into. I have always got really sick in the heat; I have had depression off and on for 20 years and have had a lot of other symptoms for over 20 years. However since 2009 things have got worse than in Dec of 2012 everything went downhill and I have not been the same and have been out of work since feb of 2013 due to all of the pain fatigue and weakness. I just need for someone to help me make sense off all of this. Whether it is MS, lupus, leukemia, Fibromyalgia, Addison, RA, Sjogren you get my point. I just need someone to talk with and help me understand the process and make sure I (we) are not miss anything, that I am not forgetting to tell the doctor something. Thank you for your time and any help.

 
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Old 06-27-2013, 01:11 PM   #2
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re: Doctor says I am not a Medical text-book case so I am dismissed

2young4painiNOH,

Since you are in Ohio, might I recommend the Cleveland Clinic? I know they have MS Specialists on staff and are a reliable institution. Generally after an initial exam by an MS Specialist, if your exam has piqued the doctor's interest, an MRI would likely be ordered. Have you had an MRI?

The diagnostic process for MS follows the international standard called the Revised McDonald Criteria. You can find this online. You shared that you have seen an MS Specialist. Was MS the only specialty of his practice? What did your MS Specialist say?

I know I am asking many questions, but I want to try to understand your background a bit more before sharing ideas. Many of the other diseases you mentioned have specific tests available whereas MS does not have any specific test. It can only be diagnosed after 400 other possible causes are eliminated.

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Old 06-27-2013, 01:50 PM   #3
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re: Doctor says I am not a Medical text-book case so I am dismissed

Thank you for answer me, this is what I know so far. I am starting my journey with Cleveland clinic now, The MS doctor I seen was not at Cleveland clinic. Nor was that the only thing he did, but he supposedly specialized in MS. I however did not feel he did a good job I was in the room with him for 15 min if that. However he did say I had something going on and that I should go to Cleveland clinic because they were one of the best hospital around and not to stop looking until I found an answer. He said he could see the pain and despair in my face and he could tell there was something wrong but he was a doctor who specialized with the brain and could not help me, and that is where are appointment ended. I have been to a hip specialist, spine specialist, Rheumy, I go back to the Rheumy On July 2, 2013 for jaw pain, and eye pain I am hoping to be able to get some answer to my question on that day but I doubt it. The pain in the hip and legs is so bad but the spine doctor say it not his department and the hip doctor say it not his. SO I am as confused as to what the heck it is. What is causes all this pain. If it not the stenosis, or the OA then what?

 
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Old 06-27-2013, 02:11 PM   #4
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re: Doctor says I am not a Medical text-book case so I am dismissed

2young4painiNOH,

As you are headed for the Cleveland Clinic, I think you should come away with the answers you need. They were there for my little sister and they were outstanding for her. I do not know if your MS Specialist was truly an MS Specialist, BUT as you shared, he did think something was amiss. At the very least, he did you a genuine blessing to point you to the Cleveland Clinic.

There are, as I stated earlier, at least 400 MS mimicries. You could have one of them OR none of them. I think that you have stress built up from having to deal with the unknown nemesis in your life. Please try to relax and leave the medical worries to the doctors. My initial symptoms which sent me to the ER in 1982 were not "textbook", but to my MS Specialist who happened to be on-call that day, the symptoms spoke volumes. Stress can cause you further symptoms whether you have MS or not. If you have MS, stress can worsen your condition.

I think since you are starting your journey at an excellent facility, you are in the best possible position. You are doing the right things and you are slowly moving ahead. I would only add that a symptom journal or diary may help. It is a first person-real time record of your symptoms. Many doctors are increasingly welcoming this information. It is also helpful because some problems cause cognitive concerns. I know that even now, after nearly 36 years, notes are good to have!

Again, I am glad you took the time to share with us. You are not alone and you are doing everything correct in my opinion. As questions or worries arise, please feel free to ask, share, and vent. We truly can empathize and I know I will not think less of you! Lastly, MS is not fatal and should you have MS, you can still have a full and rewarding life. I enjoyed 20 years of international business following my diagnosis.
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Old 06-27-2013, 03:25 PM   #5
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re: Doctor says I am not a Medical text-book case so I am dismissed

Thank you so much for your reply, it is just so frustrating. I get so fatigue I can't keep my eyes open and get this weird feeling that is it so hard to explain that comes over me when I get tried. I have also Loss balance which has been a concern of mine. They biggest problem is the muscle spasms and now the newest symptoms I am getting is foot cramps but they are right in the center of my foot. I also have tingle and numbness but I do realize this could be from the stenosis but it is constant. My vision has got so bad in my left eye and the pain is horrible. I wake up in pain with my thighs and hip that makes me cry. I also have serve neck pain. My Muscles get so tight. Then on father day my husband brought to my attention that my hand writing was changing it was getting bad. And over the weekend all my kids were together and the keep telling me I was slurring my words or mumbling and I had 2 fly on my left leg and did not even feel them on me, so I know things are getting bad; but it is as if the doctor are not listen and my PCP will not even see me and I do not know who to even call any more for this. That is why I decided to call the rheumy.SO yes I am a little stress on it. But I do try not to let it consume me; I have a 2 year old I am raising so she keep my mind a little busy

 
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Old 06-27-2013, 03:40 PM   #6
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re: Doctor says I am not a Medical text-book case so I am dismissed

2young4painiNOH,

With such a young child, fatigue can be especially difficult. When I have that fatigue, I have to rest and rest. There is little that is effective to battle this fatigue. When I am experiencing mental exhaustion, my words will slur and mumble....Again, rest is my only solace. If you can get some help, I would encourage you take a long break and allow your life to rest and recover.

When my MS worsened in 2002, my youngest son was 3. I rested in a recliner and he was content to play all day next to me. He was happy just to have me around.

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Old 06-28-2013, 05:25 AM   #7
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re: Doctor says I am not a Medical text-book case so I am dismissed

2young:
I can really relate to your post. I too have similar symptoms and have yet to be diagnosed with anything besides fibro, even though I know something else is going on. I recently experience some new symptoms that aren't in line with fibro, so my primary sent me to a neuro for further testing. No results yet. Waiting, wondering, and suffering without answers or relief is so hard. Oh, and I too have young ones . . . twin three year olds. They sure do make me smile, but I can totally relate to the fatigue and pain. It is seems so overwhelming. Please hang in there and know you are not alone!

 
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Old 06-28-2013, 06:43 AM   #8
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re: Doctor says I am not a Medical text-book case so I am dismissed

Hello
I sometimes wonder is someone with SEVERE case of fibro like I was diagnosed with could it be MS but they donít have enough medical evidence to prove it such as lesion. I have weird vision problem and I had went to the eye doctor and he said that I had inflammation and scaring on the cornea that it was a sign of MS or RA. I get double vision and pain in my eye, now I have this horrible pain from the bridge of my nose all the way down to my jaw line. I have no clue what the heck this is. I have tingling and numbness in my head since I was a teenager. Has anyone else experience this? When I tell the doctor this they look at me with a dumb founded look on their face!!! I starting to become constipated in Jan, which I have always been regular and peeing has been a rollercoaster ride but I do not have any UTI or never have, I either have to pee all the time or have the urge to go and canít. It like I donít empty my bladder all the way on those days or something I donít know. One other thing my vitamin d was very low it was 8 which we got up to 33 but I have to take vitamin D for the rest of my life. There is other thing but I will save them for another discussion.
I had a bad night with my back last night but I think it has to do with something else, I donít know and this is why I am so confuse. This is why I have so many problem, I feel that there are 2 or maybe 3 things going on with me but the doctor have not figure out the underlying problem yet so we donít even know where to

 
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Old 06-28-2013, 08:36 AM   #9
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re: Doctor says I am not a Medical text-book case so I am dismissed

2young4painiNOH,

When a new disease or a new revelation about an existing disease is made known, sometimes that disease can become like the "soup of the day". There are MSers who also have fibro, but there are also MSers who had once been diagnosed with fibro. For the MSers I have met who had been misdiagnosed with fibro, they were never satisfied that it was fibro and sought the consult of an MS Specialist. If you start with an MS Specialist, you could be directed back to see a specialist regarding fibro should the path towards MS become non-existent due to specific test results. Most doctors try to resolve their patient's problems with a diagnosis. I think it is in part human nature. A good doctor will know their limits and respond by referring you to a Specialist. Some doctors feel that they must heal you. While the intention is good, the result can be more time wandering in limbo land with lingering doubts.

TN could explain the pain in your jawline. There is a board for TN on this site. You might read a few threads over there. TN can be a standalone affliction or it can be part of MS. Due to your other symptoms, I would venture to guess that if it is TN, it is bu oone part of your "package deal". No it is not fun. Of all the known symptoms of MS, I have not had to deal with TN.

Constipation and bladder problems can affect MSers. For me, when my stress builds, I have bowel and bladder frequency increases. I now use this as signs that I have some stress building and if I do not take care of it, the frequency will increase and a cascade of additional symptoms will follow. As to how your problems may or may not be related to life stress events, a symptom journal can help you track these things and the sage advice of a doctor can also help. My doctor found nothing wrong "physically" and at first thought it to be my diet. In the end, however, it was determined that it was my body's reaction to stress.

If your Vitamin D was 8, many of the symptoms you have shared could very well be linked to the deficiency. 33 is still on the low end of the scale. Has there been any reason given for your deficiency?
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Old 06-29-2013, 08:35 AM   #10
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello, Good morning I had another rough night between my back and my face I am not sure what hurts the worse. I was in pain all day yesterday and we were having company come over because my son is home from the army for the week, so everyone was coming over to see him. We were going to have it at my sister-in-law house but it was storming so bad that we had to have it here because we have the biggest house (yah for us LOL). Let just say 7 kids running though the house ages 4 and under was not the best feeling in the world for me after 2 hours. Which I find a little weird because before it would have never had bothered me. I was feeling a little over stimulated if that makes any sense. It was as if my nerves were going haywire and electric feeling was running through my veins. Anyway My head really hurts today alone with my checks and my ears feel like the are under water. My eyes socket feels like someone punch me in it and it feels watery but it's not. I have a question to ask you? MS lesion how long does it usually take them to show up after a flare up. I just have a gut feeling that this is what I have. I know I have to keep a open MIND, but for over a year different things that have been going on all keep coming back to MS. Thanks for all your help and being there for me.

 
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Old 06-29-2013, 09:12 AM   #11
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4painiNOH,

Joyous and rambunctious events are good, but they can still overwhelm you if your CNS is compromised because your emotional centers are all "wired" into your CNS. For me, when we have a holiday gathering of immediate family and their children, the house is packed with over 60 people. I have found that I cannot last long and need to withdraw from the festivities. If I can rest, I can then enjoy additional activities before resting again. An alternative is to start building a reserve of energy 2-3 days prior to the occasion and then plan on rest afterwards. The alternative is something I use when I will be traveling or if I have to travel to my neuro appointment. After my neuro appointment, I am fortunate that my sister lives nearby and I can rest at her house for a couple of hours, otherwise, I might need to pull off at rest in my vehicle before driving home.

I am glad you could welcome your son home, and I also hope you can recover soon too!
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Old 06-30-2013, 07:13 AM   #12
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,
Hello. I have just caught up on your thread. I think Jayhawk made excellent points in reminding you that even though you have what you consider "classic MS" symptoms, those same symptoms could be one of 400+ things...

I wanted to ask you. Where are you getting your information about MS from? You listed so many different symptoms, most of which a MSer might have, but in most cases, a MSer wouldnt have ALL of them...it appears you do. This strikes me as odd- and makes me wonder if you dont have more than one autoimmune thing going on at once.

I do know people with Fibro who have such severe cases, that they mimic MS most of the time; however they do not meet the McDonald criteria- they do not have the lesions or the separate attacks required to meet the MS dx. Instead, they have continuous pain and fatigue.

I also know of several of our posters who have utilized the Cleveland clinic successfully, I agree, this is a good place to start. I think you need to put your past medical experiences in the past- and leave them there and go into this new path with an open mind, ready to accept whatever they say and do whatever they want- to lead you to answers.

I hear a ton of anxiety in your post and I imagine it is well deserved, however, I need to remind you that anxiety and stress make symptoms worse- and big house or not- there comes a time when you just have to say no to hosting events such as this. Its probably going on now and too late for you to change plans, but in the future, you need to put YOU first- and tell your family to rent a hall or plan an outdoor picnic, because you honestly do not need all those little ones running around and you dont need the extra work which hosting an event like this incurs.

Please let us know how youre doing....and take the next few days to recover.
I hope you start feeling better soon.
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Old 07-05-2013, 09:36 AM   #13
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Smile Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello everyone, just sending a little update I went to Cleveland Clinic and seen my Rheum Doctor and she said I had TMJ I need to call my dentist and get a mouth guard and probably injection . she also informed me that he might send me to a surgeon. I sure hope not because that is not the route I am looking to take, I think I probably will wait until I know longer can talk or eat before I have that done. anyway she also said all my blood work came back ok and that I do not have lupus. or any other thing. she however said she does not deal with MS and is sending me to there Neuro and want him to check me for MS, She also is sending me to a head Neuro for my migraines because they are get worse again.( and could not believe no one has sent me to see one since I have had these migraines for 4 years) I am suppose to start water therapy. and relaxation techniques, such as yoga or Tai-Chi. She is sending me for a sleep study and also want me to try taking Coenzyme Q 10 100 mg one a day for 2 weeks then 2 x a day for muscle pain. She told me I have severe fibromyalgia and I needed to accept it and learn all about it. That this can be very disabling and that I need to learn some of the tools to deal with it. She is a wonderful lady and is so helpful. She also thinks there is something else going on to though. She believe something with my muscle and nerves however I already am schedule to see a Neuromuscular doctor on the 15th. So I guess I will be moving to the fibro board and become a fibro member, thank you for being so nice to me however if I find that I have MS later on I will be back because you are the nicest people I have meant. Thank you again...

 
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Old 07-05-2013, 09:53 AM   #14
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4painiNOH,

Thank you for sharing your update. Surgery may or may not help with your pain, but you might want to wait for surgery until you have learned about where you are with the possibility of MS. I am glad you are making progress. In fact, from that which you shared, you appear to have made giant leaps! You tone is good, I think, and you are getting feedback from the doctors. For this, I am quite happy for you. Fibro is difficult too, but I am sure you can tackle this as well. I truly hope you do not have to add MS to your repertoire. Stay strong, we are still here for you!
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Old 07-05-2013, 06:53 PM   #15
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Thank you, Jayhawk, I am a little more up- beat, still very much in pain and tried and wore out all the time but I feel like I am getting some where finally. Your family is very lucky to have someone like you to be there in there corner and to understand there needs. You, your self are going through so much and still are so compassionate and caring for other. I hope they take care of you also.
It makes me realizes that I can still keep pushing myself forward and finish what I started, (school) it is just going to take a little longer. I know I have been sick for a long time but I guess this last flare up just came and decided to stay and has not left. So now I have to learn how to live my life around it, and it is a big adjustment. I have lost some friend and even family members over this, however I am starting to realize that they really were not friends and those family member must not really loved me like they said they did. I am sitting here typing this and I am getting this tingling feeling around my head. I no this is not normal but it reminds me of when I was younger in high school I use to get it. So I have been writing things down like this to tell the doctor. Not sure if they want to know back that far, but I was never one to go to the doctor when I was younger. If I was sick or in pain I just dealt with it. So I have no medical records to go back on to. except for my headache from 2009. Well thanks again and good luck to you and your family..

 
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