Aa
Please Help, I'm sooo frustrated!!
My illness started 3 yrs ago with weakness in my legs, headaches,numbness in my feet, & overwhelming fatigue. I was sent to a neurologist & went for tests that include EMG(normal)ANA(normal) MRI w/wo contrast showed lesions in periventrical & subcortical regions, lymes (normal) B12(normal) all of these tests were done over a yr. ago. Now my sx are alot worse & include severe muscle cramps & spasms, can't walk over 100ft without falling(cane isn't helping), muscle twitches(you can see me toes ect move by themselves & watch muscles move under my skin), I can only smile on L side of my face & can only move my tongue L when DR. asked me to stick it out, Electrical shocks & vibrating feeling all over, nerve pain, bowel incontinance but bladder is retentive,dizziness, I feel like I have armour on when I breath or like I'm getting a bear hug, tremors when I use my hands ect, motion sickness, slurred speech, head tends to lean to the R., things like propping my head up on my arm cause it to shake & tremble. I The 1st neurologist said MS & sent me to MS specialist who didn't think it was MS (my symptoms were not as bad at the time over a yr ago but have significantly worsened). Now I can't work, don't have insurance & I'm in a rut as to what to do. Without a dx I can't get SS Disabiity & without the disability & medical aid I can't get a dx. My family Dr. thinks its neurological & sent me to a different neurologist who says I need another MRI & to call him when I find help with some sort of medical aid. In the meantime I've since had to go to the E/R & was basically dismissed once it was discovered that I don't have insurance. I had been watching TV when all at once I lost control of my bowels, hobbled to clean myself up then became very nauseated(not like a virus or eating bad food), then I couldn't move my L side at all (the R side had been the weakside until then) I couldn't grip my cane with my R hand either, felt like I was fighting to stay concious, my forehead started to twitch really bad then I couldn't feel anything at all. They had to carry me into the E/R , where the E/R Dr pinched me (I still couldn't move), everything sounded far away although I could faintly hear, I had a catheter & IV & didn't know it until I left. There were alot of tests ordered until the Dr. realized I don't have insurance & then all but a catscan went away & so did all nurses , Drs, ect. They wouldn't even raise the head of my bed up so I could vomit (husband was there thankfully), when the DR. came back 41/2hrs later I still couldn't move & he told me he was sending me home & that it was just anxiety. I have never had a hx of anxiety! Yes, I'm frustrated but I deal with it as best I can & am also seeing a psychologist just to take the whole anxiety dx off the table. I'm 39 almost 40 & have worked hard all my life & it literally feels like I woke up 3 yrs ago in someone elses body. I don't know & have never used drugs or drank. I do smoke but am in the process of quitting. I guess what I need to know is, could this be MS (although I didn't think it progressed this quickly) or could this be a neuro-muscular condition? ALS & PLS have been mentioned & would it make a difference in the EMG results now that the muscle twitches are so much worse. I sometimes feel I'm getting weaker by the day.I can no longer do the things I enjoy like gardening or being outdoors due to the heat. I have to have my Husband present when I shower due to weakness & falls (one incident I wasn't able to get out of the tub because my arms & legs wouldn't work). I'm afraid to ho;ld my grandbabies because my arms go dead without warning. Any advice or suggestions would be appreciated! Thank you!
Thank you again!! What you described is just how I feel! They seem to mistake frutration for anxiety!! Not eating is usually how I handle stress, most of the time I only have 1 small meal & then have dinner(veggies mostly!). There are heart conditions in my family but all heart tests came out ok as did cholesterol ect.I was told years ago that I have IBS but my stomach never looked like this( also have bouts with spastic colon). You feel herded like cattle when you see a DR. anymore, they don't listen, hand you a prescription & send you out the door. I know all drs. are not like this & I sure wish I could find one of them. I do know my MRI showed lesions (all MS mimics ruled out),I was slightly anemic but thats good now, I have kidney disease & still don't know whats causing it but I see a nephrologist every 6 mo & so far that has been stable. Whatever is going on sure has bizarre symptoms!! I feel like somethings crawling on me & it won't be. shock like feelings, vibrating feeling(almost like chills but not) & evrytime I look down or bow my head to pray it feels like a lightening bolt shoots down my spine. Everything else stays numb when I'm not having spasms or twitches so who know...only God at this point. The fatigue is just horrible & I feel like I have motion sickness alot (kinda dizzy). Again , thanks so much for our help, prayers , & your support!! God be with you!! I pray you are well!
You're so welcome. It breaks my heart to hear people, like yourself, going through this process of not knowing. My MDA doctor told me that people who hear they have cancer deal with it better than those who the doctors know (from scientific proof) that they are truly sick, but don't know what it is. If you don't know what you have, then you can't grieve over it; thus, you cannot get to the acceptance stage. It's a vicious cycle and one that, I feel, doctors need to be more informed and empathetic over.
I have had two doctors tell me, 'You are not sick because you are depressed. You are depressed because you are sick.' Chronic illness can do so very much to you emotionally and mentally. When some are depressed or stressed out, they will either not eat enough or eat too much OR MOST IMPORTANTLY, sometimes when stressed over something, the body will metabolize food differently. This can cause weight gain or weight loss.
Like I said, and I must stress, I am by no means a doctor of any kind - I can just relate to what you are feeling now and what you are going through. It's like you just seek out, trying to find any type of answer, any type of direction to go into, so you can start researching and perhaps relate to someone, somebody, or something.
With that being said...the weight you have put on could be from stress. Sometimes when the body is under stress, it will not metabolize certain sugars or carbohydrates normally. You could also be retaining a lot of water because you mentioned bladder problems. Another reason, could be that because your stomach is muscle, you could be suffering from IBS or Stomach Dysmotility, which would give you that extended, bloated belly (look like you're pregnant) and just that alone will make it appear (on the scale) that you are heavier than you really are. Since you are having muscle problems, it seems that the latter explanation would make the most sense. I ALWAYS know I am going to have a REALLY bad muscle day when I wake up bloated and gassy. I know that my stomach muscles are not working properly; therefore, the rest of my muscles are going to cooperate as well.
I used to have long hair and have cut it ALLLL off due to not being able to hold my arms up to dry my hair properly. So to answer your question. Yes, muscle disease can most definitely affect the muscles in your arms AND hands. As far as your breathing ~ your lungs are also muscle. A lot of muscle disease patients have respiratory problems because of this fact. I know exactly what you mean about that 'short of breath' feeling. I have never had asthma, but I can just imagine that that is probably what it feels like. It's like you just can't get a full breath, no matter what you do. When I get like that, I grab the back of a chair and put my arms around it and lean over it. Then I try to breath as deeply as I can. That seems to help. You can also get on your bed; get on all fours; put your head down and kind of lift your stomach up and breathe as slowly and deeply as you can. This should help you - it does for me.
In reading more of your symptoms, they almost sound 'stroke-like'. Do strokes run in your family? I did some research on your MRI results and came up with these links on a syndrome / disease called Cadasil. Has any doctor ever mentioned this to you?:
http://en.wikipedia.org/wiki/CADASIL_syndrome
http://www.articlesbase.com/diseases-and-conditions-articles/cadasil-symptoms-causes-and-treatment-428370.html
This is a TOTAL long shot and I can't stress it enough, that I am in no way a doctor or trying to diagnose you...it's just that my heart grieves so for you and that I know exactly how you feel.
You mentioned that you have no insurance. Is there any teaching hospitals in your area that you can go to?
Like I said before ~ DON'T GIVE UP. Push and push and call around. Take out a loan and go to another state to a doctor that WILL accept you for free. Make your voice heard. There ARE doctors and hospitals out there that DO care and have excellent treatment services that don't require insurance. Just never lose hope and don't stop! You have rights - use them. Start researching different doctors, write letters, call them, whatever you have to do to get your dx and to get the validation that you need.
It would also be nice if a doctor would come on here and perhaps give you some insight on this. Isn't this site supposed to be a tool for a doctor to come on and give insight, support or to tell the patient what direction they need to go to next?
COME ON DOCTORS...COME ON HERE AND GIVE THIS WOMAN SOME HELP, please....
You are in my prayers - God bless you.
I have had two doctors tell me, 'You are not sick because you are depressed. You are depressed because you are sick.' Chronic illness can do so very much to you emotionally and mentally. When some are depressed or stressed out, they will either not eat enough or eat too much OR MOST IMPORTANTLY, sometimes when stressed over something, the body will metabolize food differently. This can cause weight gain or weight loss.
Like I said, and I must stress, I am by no means a doctor of any kind - I can just relate to what you are feeling now and what you are going through. It's like you just seek out, trying to find any type of answer, any type of direction to go into, so you can start researching and perhaps relate to someone, somebody, or something.
With that being said...the weight you have put on could be from stress. Sometimes when the body is under stress, it will not metabolize certain sugars or carbohydrates normally. You could also be retaining a lot of water because you mentioned bladder problems. Another reason, could be that because your stomach is muscle, you could be suffering from IBS or Stomach Dysmotility, which would give you that extended, bloated belly (look like you're pregnant) and just that alone will make it appear (on the scale) that you are heavier than you really are. Since you are having muscle problems, it seems that the latter explanation would make the most sense. I ALWAYS know I am going to have a REALLY bad muscle day when I wake up bloated and gassy. I know that my stomach muscles are not working properly; therefore, the rest of my muscles are going to cooperate as well.
I used to have long hair and have cut it ALLLL off due to not being able to hold my arms up to dry my hair properly. So to answer your question. Yes, muscle disease can most definitely affect the muscles in your arms AND hands. As far as your breathing ~ your lungs are also muscle. A lot of muscle disease patients have respiratory problems because of this fact. I know exactly what you mean about that 'short of breath' feeling. I have never had asthma, but I can just imagine that that is probably what it feels like. It's like you just can't get a full breath, no matter what you do. When I get like that, I grab the back of a chair and put my arms around it and lean over it. Then I try to breath as deeply as I can. That seems to help. You can also get on your bed; get on all fours; put your head down and kind of lift your stomach up and breathe as slowly and deeply as you can. This should help you - it does for me.
In reading more of your symptoms, they almost sound 'stroke-like'. Do strokes run in your family? I did some research on your MRI results and came up with these links on a syndrome / disease called Cadasil. Has any doctor ever mentioned this to you?:
http://en.wikipedia.org/wiki/CADASIL_syndrome
http://www.articlesbase.com/diseases-and-conditions-articles/cadasil-symptoms-causes-and-treatment-428370.html
This is a TOTAL long shot and I can't stress it enough, that I am in no way a doctor or trying to diagnose you...it's just that my heart grieves so for you and that I know exactly how you feel.
You mentioned that you have no insurance. Is there any teaching hospitals in your area that you can go to?
Like I said before ~ DON'T GIVE UP. Push and push and call around. Take out a loan and go to another state to a doctor that WILL accept you for free. Make your voice heard. There ARE doctors and hospitals out there that DO care and have excellent treatment services that don't require insurance. Just never lose hope and don't stop! You have rights - use them. Start researching different doctors, write letters, call them, whatever you have to do to get your dx and to get the validation that you need.
It would also be nice if a doctor would come on here and perhaps give you some insight on this. Isn't this site supposed to be a tool for a doctor to come on and give insight, support or to tell the patient what direction they need to go to next?
COME ON DOCTORS...COME ON HERE AND GIVE THIS WOMAN SOME HELP, please....
You are in my prayers - God bless you.
Thank you for your response! It has surely been a ride & the not knowing is the hard part right now. I have also gained like 45 lbs in 6 mos. & had to cut all my hair off due to the inability to take care of it(holding blowdryer ect. wears my arms out!). Does this affect your hands as well? My abdomen stays distended too ( I look pregnant). Sometimes feel as though someones giving me a bear hug which makes me short of breath. Thank you for your help! God bless you!!
First of all...good heavens, I am so very very sorry that you are going through this. You have had quite a roller coaster ride. When this ill, it can be pure hell not only on one's physical self but emotionally, mentally and spiritually as well. My heart goes out to you.
I don't have or experience what you do; however, I have just been diagnosed with an unspecified myopathy / muscular dystrophy. There is a form of Dystrophy that is called: Facioscapulohumeral Muscular Dystrophy. Here are a couple of links: http://www.fshsociety.org/ and http://www.mda.org/disease/fshd.html
I do know that this form (FSH) does affect the tongue and face. At first, it may not affect the legs; however, over time it will. I am by no means a doctor; however, because I have muscle disease, I know that the twitching is indicative of muscle. Of course, the cramping, spasms, and falling are as well. Your bladder and colon are also muscles. I have encountered lose of bladder and bowel control as dystrophy does affect the muscles. A lot of people think that MD only affects children. It does not. There are A LOT of dystrophies out there; some of which affect adults. I am proof of that.
My MD also affects my stomach muscles causing me to not be able to digest my food properly causing a great deal of nausea and vomiting - this condition is called Gastroparesis or Stomach Dysmotility. People don't realize how many organs are actually muscle related. Dystrophy can also cause tremors and shaking.
There are other forms of Dystrophy that affect both nerve and muscle. I would perhaps bring up to your Neurologist or Rheumatologist this. Receiving a normal EMG is not abnormal as an EMG is not a good diagnostic tool. There are a lot of doctors who are not properly qualified or certified in doing this diagnostic testing; therefore, making the results unreliable. It wasn't until I had a Muscle Biopsy that anybody knew anything that was going on with me. This was the final tool in getting my diagnosis.
Unfortunately, you must be referred to an MDA clinic by another doctor ... and ... the clinics are far and few between. I live in the heart of the largest medical center in the world and there is only one MDA clinic.
I don't know if this helps you any, but I will pray for you to get the help that you need and deserve. I, myself, have had times when I had no insurance and I know how hard it is to get the help you need. I tell people that if you are going to get anything, MD would be it as they are EXTREMELY supportive and privately funded, so getting help a lot of times is free.
My dear, my heart grieves for you. I feel in my spirit that you will have answers soon. Keep pushing - don't stop trying to get what you deserve - be vocal and demand to be taken seriously. I learned that myself through all of this. You have rights as a patient...don't ever forget that. When you feel like giving up...just pick yourself up and keep pushing harder.
You're in my thoughts and prayers ~~ please keep me / us updated.
Kay
I don't have or experience what you do; however, I have just been diagnosed with an unspecified myopathy / muscular dystrophy. There is a form of Dystrophy that is called: Facioscapulohumeral Muscular Dystrophy. Here are a couple of links: http://www.fshsociety.org/ and http://www.mda.org/disease/fshd.html
I do know that this form (FSH) does affect the tongue and face. At first, it may not affect the legs; however, over time it will. I am by no means a doctor; however, because I have muscle disease, I know that the twitching is indicative of muscle. Of course, the cramping, spasms, and falling are as well. Your bladder and colon are also muscles. I have encountered lose of bladder and bowel control as dystrophy does affect the muscles. A lot of people think that MD only affects children. It does not. There are A LOT of dystrophies out there; some of which affect adults. I am proof of that.
My MD also affects my stomach muscles causing me to not be able to digest my food properly causing a great deal of nausea and vomiting - this condition is called Gastroparesis or Stomach Dysmotility. People don't realize how many organs are actually muscle related. Dystrophy can also cause tremors and shaking.
There are other forms of Dystrophy that affect both nerve and muscle. I would perhaps bring up to your Neurologist or Rheumatologist this. Receiving a normal EMG is not abnormal as an EMG is not a good diagnostic tool. There are a lot of doctors who are not properly qualified or certified in doing this diagnostic testing; therefore, making the results unreliable. It wasn't until I had a Muscle Biopsy that anybody knew anything that was going on with me. This was the final tool in getting my diagnosis.
Unfortunately, you must be referred to an MDA clinic by another doctor ... and ... the clinics are far and few between. I live in the heart of the largest medical center in the world and there is only one MDA clinic.
I don't know if this helps you any, but I will pray for you to get the help that you need and deserve. I, myself, have had times when I had no insurance and I know how hard it is to get the help you need. I tell people that if you are going to get anything, MD would be it as they are EXTREMELY supportive and privately funded, so getting help a lot of times is free.
My dear, my heart grieves for you. I feel in my spirit that you will have answers soon. Keep pushing - don't stop trying to get what you deserve - be vocal and demand to be taken seriously. I learned that myself through all of this. You have rights as a patient...don't ever forget that. When you feel like giving up...just pick yourself up and keep pushing harder.
You're in my thoughts and prayers ~~ please keep me / us updated.
Kay
Have an Answer?
You are reading content posted in the Rare Diseases Community
New study links cell phones to slightly increased cancer risk. Should you be concerned?
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
