Aa
where do I begin?
Hi there. I'm a 35 yrs old and I'm feeling quite uncertain about my health. In 2004 I was diagnosed with mild to moderate fibromyalgia by a rheumotologist (pardon my spelling). At the time I was just relieved to finally have a diagnosis because I had so much going on and it was always one thing after another. Anyhow, I had been doing really well for quite a few yrs..no major flare ups. I apologize if this post is going to sound all over the place..but that seems be how my mind is these days and I have quite a bit of confusion and tend to forget alot.
Ok for the last year I really have not been feeling well. I have suffered from migraines off and on since being a teen, but in the last year it's been a lot worse. I have had cognitive issues for the last couple yrs..or at least I have noticed it for this long, but have never really said anything. I used to be an excellent speller and I now struggle to remember how to spell simple words and have to use a dictionairy a lot of the time. I cannot remember things that were told to me just a couple hours or a day before. My balance is off..I have a hard time steadying myself.
This has been going on for awhile. Before Christmas this past yr, I finally opened up to my doctor. Told her I felt as though I was losing it. I had started having this pulsating, elsymptomsectric shock like sensation in the left side of my head. extreme left leg pain and two toes on my left foot were completely asleep/numb. My previous blood work came back ok, except for low Iron. I asked if my fibromyalgia could have progressed into this..she did not give me a clear answer..but my guess is "no"..This feels totally different from anything I felt with my supposed fibromyalgia.
Earlier in December I had this excruciating pain in my upper spine, the best way I can describe it is that it felt like there was a red hot metal rod going down vertically through my spine, from the base of my neck to just below my shoulder blades. This lasted about 2 days. Forgot to mention this to my doc..have since learned to keep a journal of symptoms and what not, as I tend to forget a lot! She booked me for MRI, based on the strange feeling on left side of head and cognitive issues..also my vision was going all wonky. MRI came back normal..a relief, of course..but still unanswered questions.
A few days before I had MRI, I started with numbness and feeling tingly on the left side of my face. First episode lasted a little over 24hrs. It has happened about 6 times since mid december. My cheek is tingly, it feels puffy..also feels like my mouth or lips are drooping, but I look normal in the mirror. Anyways, MRI came back normal, and I told her of new symptoms..she referred me to neurologist. I only see him in June. A major concern of mine is that I did my research on this neurologist and he's had alot of complaints from patients. I'm a very sensitive person and I feel like I'm losing it as it is..I don't want to wait 6 months to see a neurologist just to get there and have him make me feel like I'm stupid and crazy. I already feel that way. A lot of the complaints patients had was that he is very condescending , very impersonal, will not make eye contact, and quite frankly rude.
I need someone patient who will listen and be willing to investigate if needed. I don't open up easily, I'm always afraid of burdening people..but at this point my health has got to come first. I cannot go on like this. Just a couple weeks ago I was in a store and my left leg just went all wobbly and gave out, my speech is getting worse..I have a hard time pronouncing words, and I can't think of what I am trying to say,,forget what I was talking about mid sentence.
Can someone give me advice? I feel like this is beyond fibromyalgia..if it was ever even fibromyalgia in the first place. I'm just physically and mentally exhausted..Oh! and bladder incontinence! Doc thinks it's because I have had children..I had my first at 18 and my second at 28..I was having the incontinence and frequent urination before I had my second. Now it's just worse..heaven forbid I laugh or sneeze because it's not just a dribble. I get up to the bathroom minimum of 4 times a night. It don't seem normal to me.
I'm sorry this was just not ONE simple question..I just felt like I had to get everything out to give whoever a better idea of what was going on..I realize I may just have confused you all more..lol..I'm sorry.
My biggest concern now is if I'm likely looking at MS? My mother's best friend has ms and she seems quite concerned..she is the one who pushed me to open up to my family MD,
to whoever can make sense of this and offer advice, I thank you in advance.
Jenn
Ok for the last year I really have not been feeling well. I have suffered from migraines off and on since being a teen, but in the last year it's been a lot worse. I have had cognitive issues for the last couple yrs..or at least I have noticed it for this long, but have never really said anything. I used to be an excellent speller and I now struggle to remember how to spell simple words and have to use a dictionairy a lot of the time. I cannot remember things that were told to me just a couple hours or a day before. My balance is off..I have a hard time steadying myself.
This has been going on for awhile. Before Christmas this past yr, I finally opened up to my doctor. Told her I felt as though I was losing it. I had started having this pulsating, elsymptomsectric shock like sensation in the left side of my head. extreme left leg pain and two toes on my left foot were completely asleep/numb. My previous blood work came back ok, except for low Iron. I asked if my fibromyalgia could have progressed into this..she did not give me a clear answer..but my guess is "no"..This feels totally different from anything I felt with my supposed fibromyalgia.
Earlier in December I had this excruciating pain in my upper spine, the best way I can describe it is that it felt like there was a red hot metal rod going down vertically through my spine, from the base of my neck to just below my shoulder blades. This lasted about 2 days. Forgot to mention this to my doc..have since learned to keep a journal of symptoms and what not, as I tend to forget a lot! She booked me for MRI, based on the strange feeling on left side of head and cognitive issues..also my vision was going all wonky. MRI came back normal..a relief, of course..but still unanswered questions.
A few days before I had MRI, I started with numbness and feeling tingly on the left side of my face. First episode lasted a little over 24hrs. It has happened about 6 times since mid december. My cheek is tingly, it feels puffy..also feels like my mouth or lips are drooping, but I look normal in the mirror. Anyways, MRI came back normal, and I told her of new symptoms..she referred me to neurologist. I only see him in June. A major concern of mine is that I did my research on this neurologist and he's had alot of complaints from patients. I'm a very sensitive person and I feel like I'm losing it as it is..I don't want to wait 6 months to see a neurologist just to get there and have him make me feel like I'm stupid and crazy. I already feel that way. A lot of the complaints patients had was that he is very condescending , very impersonal, will not make eye contact, and quite frankly rude.
I need someone patient who will listen and be willing to investigate if needed. I don't open up easily, I'm always afraid of burdening people..but at this point my health has got to come first. I cannot go on like this. Just a couple weeks ago I was in a store and my left leg just went all wobbly and gave out, my speech is getting worse..I have a hard time pronouncing words, and I can't think of what I am trying to say,,forget what I was talking about mid sentence.
Can someone give me advice? I feel like this is beyond fibromyalgia..if it was ever even fibromyalgia in the first place. I'm just physically and mentally exhausted..Oh! and bladder incontinence! Doc thinks it's because I have had children..I had my first at 18 and my second at 28..I was having the incontinence and frequent urination before I had my second. Now it's just worse..heaven forbid I laugh or sneeze because it's not just a dribble. I get up to the bathroom minimum of 4 times a night. It don't seem normal to me.
I'm sorry this was just not ONE simple question..I just felt like I had to get everything out to give whoever a better idea of what was going on..I realize I may just have confused you all more..lol..I'm sorry.
My biggest concern now is if I'm likely looking at MS? My mother's best friend has ms and she seems quite concerned..she is the one who pushed me to open up to my family MD,
to whoever can make sense of this and offer advice, I thank you in advance.
Jenn
That's what we're here for :-) Ask us lots of questions over the next six months.
Kylw
Kylw
Thank you guys for your input. It's so appreciated. I know it can be a very long process..and I am aware of what goes into testing for MS. I"m just at the beginning now. MRI of brain was normal, but I feel far from normal; therefore next step was being referred to neurology. I was diagnosed by a rheumatologist years ago with Fibromyalgia and I know it can certainly mimic some aspects of MS. I just have newer symptoms that I have never had and my cognitive issues are getting worse. Oh you are right when you say I seem to have a lot of "stress"..lol. I have also asked myself if this could be all stress related..but again, I have had stress and depression since a young teen..and have never felt like this. I know it's a waiting game and I understand that 6 months is not totally out of reason, I will see this neurologist with an open mind..I'm just very nervous. I don't want to forget anything but yet I don't want to ramble on..which I can do when I am nervous. As you have all been able to tell, I'm sure..lol This morning when I posted, I was having a slight meltdown. I was to the point where I just wanted to tear the left side of my face off..this creepy crawly feeling is driving me crazy. Again thank you for the input, the advice and for taking the time to read this crazy lady's rants.
Jenn
Jenn
Hi Jenn - Welcome to the group :-)
Some of the symptoms you describe might certainly be caused by MS. But as Sarah points out, they can also be caused by many other things. Sorting this all out can take time, and patience. There will likely be a lot more testing. The components of an MS diagnosis include some or all of the following;
* MRI of head, c-spine and t-spine
* Blood tests to rule out MS mimics
* Lumbar Puncture
* Evoked Potential studies
* Nerve conduction studies
* Thorough clinical exam
Six months is not an unreasonable waiting time to see a neurologist. I've already booked an appointment with mine for Jan. 2015! Keeping a log is a very good idea. That way you will be less likely to forget something when you do see the doc.
To maximize the time spent with the doc, try and focus on the top 3-4 things in terms of quality of life impact. If you try and mention every sneeze or twitch you risk the possibility of losing his attention. Doctors are human after all :-)
Most importantly of all, try to go into the appointment with an open mind. If you go in under the notion that he may "very condescending , very impersonal, will not make eye contact, and quite frankly rude" he is more likely to be all of the above.
Ask us lots of questions :-)
Kyle
Some of the symptoms you describe might certainly be caused by MS. But as Sarah points out, they can also be caused by many other things. Sorting this all out can take time, and patience. There will likely be a lot more testing. The components of an MS diagnosis include some or all of the following;
* MRI of head, c-spine and t-spine
* Blood tests to rule out MS mimics
* Lumbar Puncture
* Evoked Potential studies
* Nerve conduction studies
* Thorough clinical exam
Six months is not an unreasonable waiting time to see a neurologist. I've already booked an appointment with mine for Jan. 2015! Keeping a log is a very good idea. That way you will be less likely to forget something when you do see the doc.
To maximize the time spent with the doc, try and focus on the top 3-4 things in terms of quality of life impact. If you try and mention every sneeze or twitch you risk the possibility of losing his attention. Doctors are human after all :-)
Most importantly of all, try to go into the appointment with an open mind. If you go in under the notion that he may "very condescending , very impersonal, will not make eye contact, and quite frankly rude" he is more likely to be all of the above.
Ask us lots of questions :-)
Kyle
You have wound up in a MS chat room for patients who share information with each other. You are certainly welcome.
It is not unusual to have to "wait" on a neuro. Many of us have had to go to several before we get anywhere. Some of your symptoms come with motherhood and if they think you have fibro, then you need a rheumatologist.
A normal MRI, well no lesions, will not get your a Dx of MS. I will tell you that there are over 20 other diseases that mimic MS and you will have to go thru a lot of testing and waiting as the doctor(s) rule them out. It will take time.
Just be reassured that MS is almost always listed on Dr. Google as a possible because our symptoms are so varied from one person to another.
Keeping a journal log is a good idea, it will help down the road. Take a deep breathe, MS is a slow moving train, if that's what it is,
I see a lot of "stress" in your life and wondering if anyone has sent you for a cardiac work up? I'd definitely rule that out first off. If you don't hear anything good about this doctor, find another one, since you have 6 months to wait anyway.
I will tell you that I see my neuro twice a year (I've been thru 4 of them) and when I make my next appt for the next visit, he's already almost booked up (6 monhts) so I don't dare cancel, and he's 3 states away from me but I adore him.
You will have to open up, if you want them to help you, and you may have to go thru several doctors, so be patient. I am trying not to preach but have "been there, done that" as have many other of us.
Hang in there, and we are here if you need someone to listen
Sarah
It is not unusual to have to "wait" on a neuro. Many of us have had to go to several before we get anywhere. Some of your symptoms come with motherhood and if they think you have fibro, then you need a rheumatologist.
A normal MRI, well no lesions, will not get your a Dx of MS. I will tell you that there are over 20 other diseases that mimic MS and you will have to go thru a lot of testing and waiting as the doctor(s) rule them out. It will take time.
Just be reassured that MS is almost always listed on Dr. Google as a possible because our symptoms are so varied from one person to another.
Keeping a journal log is a good idea, it will help down the road. Take a deep breathe, MS is a slow moving train, if that's what it is,
I see a lot of "stress" in your life and wondering if anyone has sent you for a cardiac work up? I'd definitely rule that out first off. If you don't hear anything good about this doctor, find another one, since you have 6 months to wait anyway.
I will tell you that I see my neuro twice a year (I've been thru 4 of them) and when I make my next appt for the next visit, he's already almost booked up (6 monhts) so I don't dare cancel, and he's 3 states away from me but I adore him.
You will have to open up, if you want them to help you, and you may have to go thru several doctors, so be patient. I am trying not to preach but have "been there, done that" as have many other of us.
Hang in there, and we are here if you need someone to listen
Sarah
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