Aa
In Limbo
I also found this forum by accident but it may be just waht I am looking for!
I have a lot of MS symptoms which I know can be other things. This stuff has been going on for about 3 years with no answers and I am fed up. I’m 2007 I was diagnosed after a sleep clinic with "restless leg syndrome" and told that I never enter into the REM sleep but that they clinic did not know why so that explains why I have "Chronic Fatigue syndrome" even though I really am always so tired I almost fall asleep sitting at my desk, everytime I get in a car, the minute I try to watch a movie... you name it. I could easily sleep 16-18 hours a day. No joke!....I was diagnosed in 2009 with Fibromyalgia, and Chronic Headaches....
I see the following drs....
A Neurologist that I do not like
A Rheumatologist
Family Dr...
Gyno...had a full total abdominal hysterectomy a year ago June 1st due to extreme abdominal pain....
Now a Urologist for a new development where I cannot urinate and they decided after a CT scan of bladder and kidneys with dye, and a cystoscope and a urodynamic study that I have a void dysfunction, stress incontinence, a cystocele (which they now need to do a sling procedure to strap my bladder back in), and I also have a Detrusor instability. They tell me that my bladder muscles and my sphincter muscles are working against each other and as my bladder is trying to squeeze my urine out that my sphincter is squeezing to keep it in....how does this happen?
I did finally get my family Dr to order a MRI on my lower spine due to the numbness and tingling that I have in my toes 90% of every day and while I was in there I made them do my head it was a open MRI machine and they did not use contrast and I do have the MRI pictures in my possession, but according to the radiologist they are "normal"...when I seen my Neuro. and asked him if he ever looked at it he said" you had those done?" good guy huh? he is only treating headaches....he could care less.....I am so sick of feeling like a cow that is shoved through a chute that is branded for my insurance payment and co-pay and no one pays attention to what goes on to me!
I feel like crap almost daily! My quality of life *****! I am depressed! It just gets old! I am seriously thinking about just spending the money out of my pocket and going to the mayo clinic and getting evaluated. I am not looking for MS but I am just looking for answers....
BTW....this is only a partial list of my symptoms!
The following is the meds they have me on.....
600 mg of Neurontin 3 times a day
150 mgs of Topamax (for headaches)
10 mgs of Ambien (Sleep)
1 mg Reqip (restless legs)
2000 IU of Vitamin D3 (due to low levels)
0.625/1.25 Estrogen/Testosterone HRT
I have a lot of MS symptoms which I know can be other things. This stuff has been going on for about 3 years with no answers and I am fed up. I’m 2007 I was diagnosed after a sleep clinic with "restless leg syndrome" and told that I never enter into the REM sleep but that they clinic did not know why so that explains why I have "Chronic Fatigue syndrome" even though I really am always so tired I almost fall asleep sitting at my desk, everytime I get in a car, the minute I try to watch a movie... you name it. I could easily sleep 16-18 hours a day. No joke!....I was diagnosed in 2009 with Fibromyalgia, and Chronic Headaches....
I see the following drs....
A Neurologist that I do not like
A Rheumatologist
Family Dr...
Gyno...had a full total abdominal hysterectomy a year ago June 1st due to extreme abdominal pain....
Now a Urologist for a new development where I cannot urinate and they decided after a CT scan of bladder and kidneys with dye, and a cystoscope and a urodynamic study that I have a void dysfunction, stress incontinence, a cystocele (which they now need to do a sling procedure to strap my bladder back in), and I also have a Detrusor instability. They tell me that my bladder muscles and my sphincter muscles are working against each other and as my bladder is trying to squeeze my urine out that my sphincter is squeezing to keep it in....how does this happen?
I did finally get my family Dr to order a MRI on my lower spine due to the numbness and tingling that I have in my toes 90% of every day and while I was in there I made them do my head it was a open MRI machine and they did not use contrast and I do have the MRI pictures in my possession, but according to the radiologist they are "normal"...when I seen my Neuro. and asked him if he ever looked at it he said" you had those done?" good guy huh? he is only treating headaches....he could care less.....I am so sick of feeling like a cow that is shoved through a chute that is branded for my insurance payment and co-pay and no one pays attention to what goes on to me!
I feel like crap almost daily! My quality of life *****! I am depressed! It just gets old! I am seriously thinking about just spending the money out of my pocket and going to the mayo clinic and getting evaluated. I am not looking for MS but I am just looking for answers....
BTW....this is only a partial list of my symptoms!
The following is the meds they have me on.....
600 mg of Neurontin 3 times a day
150 mgs of Topamax (for headaches)
10 mgs of Ambien (Sleep)
1 mg Reqip (restless legs)
2000 IU of Vitamin D3 (due to low levels)
0.625/1.25 Estrogen/Testosterone HRT
hi jodi,
welcome to the forum, jodi. i am sorry you are having such a difficult time, but i hope you will find the support you need here, amongst friends.
have you had a c-spine MRI? i have heard that the open MRI machines do not produce very high quality images, so the next time you have one, you may want to investigate a center that has closed, 3T scanners.
best wishes to you and be well.
binx
welcome to the forum, jodi. i am sorry you are having such a difficult time, but i hope you will find the support you need here, amongst friends.
have you had a c-spine MRI? i have heard that the open MRI machines do not produce very high quality images, so the next time you have one, you may want to investigate a center that has closed, 3T scanners.
best wishes to you and be well.
binx
Welcome, and I'm sorry you are stuck in Limboland. You aren't alone, and this is a good place to come and find people who understand.
You say you have chronic fatigue syndrome-I've been doing my own research on this because I have neuro symptoms, massive fatigue (what an inadequate word), post exertion problems and brain fog. There is a disease called myalgic encephalomyelitis (ME) that can create chronic fatigue. They are just publishing papers now on a retrovirus called XMRV that is associated.
I don't know if this picture fits for you, but hang in there. We understand the difficult hunt for answers
You say you have chronic fatigue syndrome-I've been doing my own research on this because I have neuro symptoms, massive fatigue (what an inadequate word), post exertion problems and brain fog. There is a disease called myalgic encephalomyelitis (ME) that can create chronic fatigue. They are just publishing papers now on a retrovirus called XMRV that is associated.
I don't know if this picture fits for you, but hang in there. We understand the difficult hunt for answers
Hi Jodi,
I feel your frustration. That feeling that I am just part of the payment on the alimony for wife3 or the vacation house can make my blood boil. I'm really sorry you are going through this, both physically and emotionally.
You mentioned getting a second opinion from the Mayo Clinic or some group, but that you would have to spring for it out of your own pocket. Have you checked your insurance benefits to see if it covers second opinions? Just a thought. I'm just wondering if you really have to incur the expense or if your benefits will help you out. Personally, I'm still trying to decide if/when/where I want to go, and thinking I'll need to save up to pay my part after the insurance. Sometimes I think I'll just wait for next time I'm in too much pain to function or the next "big" event and go to the emergency room at the other hospital in my town.
In the meantime, welcome, albeit reluctantly, to the limboland forum. Hang in there!
--faithHGL
I feel your frustration. That feeling that I am just part of the payment on the alimony for wife3 or the vacation house can make my blood boil. I'm really sorry you are going through this, both physically and emotionally.
You mentioned getting a second opinion from the Mayo Clinic or some group, but that you would have to spring for it out of your own pocket. Have you checked your insurance benefits to see if it covers second opinions? Just a thought. I'm just wondering if you really have to incur the expense or if your benefits will help you out. Personally, I'm still trying to decide if/when/where I want to go, and thinking I'll need to save up to pay my part after the insurance. Sometimes I think I'll just wait for next time I'm in too much pain to function or the next "big" event and go to the emergency room at the other hospital in my town.
In the meantime, welcome, albeit reluctantly, to the limboland forum. Hang in there!
--faithHGL
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