Aa
MS?
In March of last year my problems got really bad. I had been having problems before then, but they were easily brushed off. I was finding it difficult to walk long distances. Walking up a flight of stairs would cause my legs to shake uncontrollably. Driving a stick shift for 20 minutes would cause my legs to shake uncontrollably. I was smelling things that weren’t there (only when I am very tired). In March I got very foggy- I was having a very hard time concentrating and would zone out. I finally went to the doctor who sent me to the emergency room. I did not have insurance. They kept asking me and my husband if I was on something- if I had taken drugs. They ran a full blood panel- everything was normal. My EKG (due to heart palpitations) had a slight sinus irregularity. The doctor came in and had me do the basic neurology tests- I couldn’t walk heel to toe, I couldn’t walk on my heels, and I couldn’t walk backwards. My balance was awful. And to top it all off I was laughing even though I felt frustrated and I don’t know why. He said they couldn’t do an MRI because I didn’t have insurance , but the CT scan was normal.
I had to get on Medicaid so I didn’t get to the neurologist NP until May (I was also sent for an echocardiogram- which was normal). At that point I was dragging my right leg, had developed tremors, was slurring my speech when tired, had tingling sensations in my hands and feet at night and when standing for more than a few minutes, felt like I had a hat on half my head, I wasn’t sweating and always felt cold and was having muscle cramps. The NP is an MS specialist at a teaching hospital. She sent me for an MRI, VEP, EEG. Everything was normal (except mild slowing in left temporal lobe on EEG- I didn’t experience any olfactory hallucinations during the procedure). The NP diagnosed foot drop, right sided weakness, nystagmus, poor balance and tremors. She was very surprised when the MRI and the thyroid tests came back normal. I came back with twitching (later dx fasciculations) and more muscle cramping/ spasms. She sent me for an EMG on my right thigh. The neuro was very rude- took maybe 4 minutes- told the intern “there is a really interesting case after this, so we will get this done fast”- at one point he said “these, right here, if we see any more of these we worry”- but he only looked for a few more seconds and didn’t note what “these” were in his report.
At this point the NP sent me to the MS neurologist. He came in to the room with my file and proceeded to read my file, for the first time, for about 5 minutes in front of me. He then looked up and said “there is nothing wrong with you! Doesn’t that make you happy?” I think I looked at him like he was an idiot. My husband said- “no, there is something wrong with her you just haven’t figured out what yet.” He then went on to tell the doctor about my weakness. The doctor came over and tested both hands. He asked about 5 times if I was sure I was right handed. He then asked my husband. He kept saying- try harder. He then asked about the twitching- I didn’t even bother to answer- figuring he wasn’t going to believe me anyway. My husband told him it looks like popping under my skin and can last in one muscle for days. He seemed very concerned at that point. I later learned he wrote that he thought it could be ALS in my file. He sent me for PT and to a neuromuscular doctor and ordered more blood work.
The neuromuscular doctor told me he thought I should keep busy (I had cut nearly everything out of my life at this point- walking was so hard and I thought maybe I was just doing too much). He said I should try to do more of the things I had been doing (I had been going to school full time and my kids were all many extracurricular activities). He said he didn’t think it was BFS, but he couldn’t rule out ALS -he said it can take years to diagnose. He didn’t order another EMG, but told me to come back in 6 months. I later learned that he wrote anxiety in my chart. He never mentioned anxiety- I don’t even know why I would be anxious since I wasn't going to school any more.
I want to PT for 3 months 2x a week with little improvement. She said I have true weakness. She said we really needed to focus on stretching and range of motion. After 3 months my Medicaid ran out.
I was also sent to a movement disorder specialist who said essential tremors, right sided weakness, dragging right leg.
I have started having blurred vision and pain behind my right eye. With walking- I start out okay and it just gets harder and harder the more I walk. I can’t walk up a flight of stairs without my legs shaking for hours. I have had some burning pain on my right side- the last time it was on my right leg for 4 days. I do not have atrophy. My hands and feet swell and change color if I stand for more than 5 minutes. I still have slurred speech and difficulty swallowing when I am tired. Bread is very hard to swallow. I have laughed inappropriately a couple more times. I drop things a lot. My balance is poor. It is hard to brush my hair- or do anything with my arms over my head. After walking a while my legs just start to feel like wood- they are so heavy. The other day my whole leg fell asleep while I was walking. I often wake up not able to feel my arm- and if I touch it it is like touching someone else. I get a lot of muscle pain in my arm. I do not have insurance and am at a loss. I am 35 years old and not being able to do much is killing me- I love to be going and doing. I also need some answers. The NP still thinks it is MS and just isn’t showing up yet on the MRI. How long should I wait for another MRI? Should I get another opinion? What do you all think? Does this sound like MS?
I had to get on Medicaid so I didn’t get to the neurologist NP until May (I was also sent for an echocardiogram- which was normal). At that point I was dragging my right leg, had developed tremors, was slurring my speech when tired, had tingling sensations in my hands and feet at night and when standing for more than a few minutes, felt like I had a hat on half my head, I wasn’t sweating and always felt cold and was having muscle cramps. The NP is an MS specialist at a teaching hospital. She sent me for an MRI, VEP, EEG. Everything was normal (except mild slowing in left temporal lobe on EEG- I didn’t experience any olfactory hallucinations during the procedure). The NP diagnosed foot drop, right sided weakness, nystagmus, poor balance and tremors. She was very surprised when the MRI and the thyroid tests came back normal. I came back with twitching (later dx fasciculations) and more muscle cramping/ spasms. She sent me for an EMG on my right thigh. The neuro was very rude- took maybe 4 minutes- told the intern “there is a really interesting case after this, so we will get this done fast”- at one point he said “these, right here, if we see any more of these we worry”- but he only looked for a few more seconds and didn’t note what “these” were in his report.
At this point the NP sent me to the MS neurologist. He came in to the room with my file and proceeded to read my file, for the first time, for about 5 minutes in front of me. He then looked up and said “there is nothing wrong with you! Doesn’t that make you happy?” I think I looked at him like he was an idiot. My husband said- “no, there is something wrong with her you just haven’t figured out what yet.” He then went on to tell the doctor about my weakness. The doctor came over and tested both hands. He asked about 5 times if I was sure I was right handed. He then asked my husband. He kept saying- try harder. He then asked about the twitching- I didn’t even bother to answer- figuring he wasn’t going to believe me anyway. My husband told him it looks like popping under my skin and can last in one muscle for days. He seemed very concerned at that point. I later learned he wrote that he thought it could be ALS in my file. He sent me for PT and to a neuromuscular doctor and ordered more blood work.
The neuromuscular doctor told me he thought I should keep busy (I had cut nearly everything out of my life at this point- walking was so hard and I thought maybe I was just doing too much). He said I should try to do more of the things I had been doing (I had been going to school full time and my kids were all many extracurricular activities). He said he didn’t think it was BFS, but he couldn’t rule out ALS -he said it can take years to diagnose. He didn’t order another EMG, but told me to come back in 6 months. I later learned that he wrote anxiety in my chart. He never mentioned anxiety- I don’t even know why I would be anxious since I wasn't going to school any more.
I want to PT for 3 months 2x a week with little improvement. She said I have true weakness. She said we really needed to focus on stretching and range of motion. After 3 months my Medicaid ran out.
I was also sent to a movement disorder specialist who said essential tremors, right sided weakness, dragging right leg.
I have started having blurred vision and pain behind my right eye. With walking- I start out okay and it just gets harder and harder the more I walk. I can’t walk up a flight of stairs without my legs shaking for hours. I have had some burning pain on my right side- the last time it was on my right leg for 4 days. I do not have atrophy. My hands and feet swell and change color if I stand for more than 5 minutes. I still have slurred speech and difficulty swallowing when I am tired. Bread is very hard to swallow. I have laughed inappropriately a couple more times. I drop things a lot. My balance is poor. It is hard to brush my hair- or do anything with my arms over my head. After walking a while my legs just start to feel like wood- they are so heavy. The other day my whole leg fell asleep while I was walking. I often wake up not able to feel my arm- and if I touch it it is like touching someone else. I get a lot of muscle pain in my arm. I do not have insurance and am at a loss. I am 35 years old and not being able to do much is killing me- I love to be going and doing. I also need some answers. The NP still thinks it is MS and just isn’t showing up yet on the MRI. How long should I wait for another MRI? Should I get another opinion? What do you all think? Does this sound like MS?
I was diagnosed with MS 30 years ago (1986) when I was 41. There were no answers, no drugs, no anything ... was told to go about with my life ... I did the best I could and It's a familiar nightmare now. That being said ....... please contact the MS Society (even if what you have does not wind up being MS). They are WONDERFUL and will help steer you in the right direction with so many things. Many years after my diagnosis I found the following article: It FINALLY put into words what MS feels like. Take it with you to any doctor appointments ... at least it will show them what you "FEEL".
What Multiple Sclerosis Feels Like
When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below---
Painful Heavy Legs... Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
Painful Feet... Put equal or unequal amounts of small pebbles in each shoe then take a walk.
Loss of Feeling in Hands and/or Arms... Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.
Loss of Feeling in Feet and/or Legs... Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.
TN (Trigeminal Neuralgia)...Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.
Uncontrollable Itching... Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling... Stick your finger in an electrical socket - preferably wet.
Tight Banded Feeling... Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day.
Shots... Fill one of our spare needles with saline solution and give yourself a shot every time we do our shot.
Side Effects From the Shot... Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms... Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity... Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears...Put a bee in each ear and then put a plug in each one...bzzzzzzzzzzzzzzzzzz
Balance and Walking Problems... Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.
Urgently Needing to Pee... We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations... Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.
Pins and Needles... Stab yourself repeatedly with needles all over your body or better yet....Get a large tattoo.
Dizziness (Vertigo)... Get on a gently rocking boat all day and all night and take several walks around the deck.
Fatigue... Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.
MS Hug (Intercostal Neurlagia)... Take a midget being held by a 300lb strongman on a recliner sitting on top of chest. Now try to breathe without passing out.
Bowel Problems... Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
Burning Feeling... Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.
Intention Tremor... Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky?
Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's)... Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis)... Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues... Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
Foot Drop... Wear one swim fin and take about a 1/2 mile walk.
Depression... Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting her/him asleep.
Fear... Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day.
Swallowing... Try swallowing the hottest chili pepper you can find finely puried.
Heat Intolerance or Feeling Hot When it's Really Not... You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.
And Finally... After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
I know this is long but I wish you all the very best .... you are among wonderful people who have "WALKED IN YOUR SHOES" GOD bless.
Dumeisterinski
What Multiple Sclerosis Feels Like
When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below---
Painful Heavy Legs... Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
Painful Feet... Put equal or unequal amounts of small pebbles in each shoe then take a walk.
Loss of Feeling in Hands and/or Arms... Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.
Loss of Feeling in Feet and/or Legs... Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.
TN (Trigeminal Neuralgia)...Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.
Uncontrollable Itching... Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling... Stick your finger in an electrical socket - preferably wet.
Tight Banded Feeling... Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day.
Shots... Fill one of our spare needles with saline solution and give yourself a shot every time we do our shot.
Side Effects From the Shot... Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms... Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity... Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears...Put a bee in each ear and then put a plug in each one...bzzzzzzzzzzzzzzzzzz
Balance and Walking Problems... Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.
Urgently Needing to Pee... We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations... Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.
Pins and Needles... Stab yourself repeatedly with needles all over your body or better yet....Get a large tattoo.
Dizziness (Vertigo)... Get on a gently rocking boat all day and all night and take several walks around the deck.
Fatigue... Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.
MS Hug (Intercostal Neurlagia)... Take a midget being held by a 300lb strongman on a recliner sitting on top of chest. Now try to breathe without passing out.
Bowel Problems... Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
Burning Feeling... Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.
Intention Tremor... Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky?
Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's)... Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis)... Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues... Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
Foot Drop... Wear one swim fin and take about a 1/2 mile walk.
Depression... Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting her/him asleep.
Fear... Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day.
Swallowing... Try swallowing the hottest chili pepper you can find finely puried.
Heat Intolerance or Feeling Hot When it's Really Not... You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.
And Finally... After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
I know this is long but I wish you all the very best .... you are among wonderful people who have "WALKED IN YOUR SHOES" GOD bless.
Dumeisterinski
Hi, I'm very worried about you. I can't post a long one because I overdid it today in the heat and humidity and am feeling weak. It's hard to haol my arms up to the keyboard.
If you indeed have Optic Neuritis and it is needs to be treated with steroids as soon as possible. Did the Ophthalmologist say anything about this? Please call the MS NP and tell her this and see what can be done to expedite getting you coverage. This is very important to preserve your eyesight. Let us know what they say!
Think of you, a lot! Quix
If you indeed have Optic Neuritis and it is needs to be treated with steroids as soon as possible. Did the Ophthalmologist say anything about this? Please call the MS NP and tell her this and see what can be done to expedite getting you coverage. This is very important to preserve your eyesight. Let us know what they say!
Think of you, a lot! Quix
I am sorry that I didn't write back sooner. I was out of town all weekend and didn't have access to an internet connection. Thank you so much for your thoughtful replies.
I went to the Ophthalmologist today and he thinks it is Optic Neuritis. He can't see it- he thinks it is in a nerve further back than is currently visible and thinks it is in the early stages. I made an appointment to go back next week, though he said to call and come in sooner if my vision starts to go before then. He gave me some eye drops for inflamation. I left a message with my NP letting her know.
My eye pain right now is pretty bad- so I may have to write some now and some later. I hope that is okay.
My legs start out relatively fine- they definitely get worse the more I use them (I forgot to mention that I am now having weakness on both sides- though it is still worse on the right side). The right leg is slightly smaller and shaped different- but it hasn't really changed in the past 9 months. After a while they just feel heavy and unsteady. My balance is off, too, so I start looking drunk- it is embarrassing.
I still have trouble walking on my heels, other than that I am much better than I was last year. Yes, the laughing inappropriately makes me feel very off- it is hard to explain almost- I absolutely hate it but have no control over it. It is usually in high anxiety situations. As far as laughing in the ER- I actually had an awesome doctor- when I started laughing he turned to my husband and said "you need to get her to a neurologist as quick as possible. This could be MS." Then he wrote MS in my chart. When I went to the first doctor after the ER without my records they said anxiety and prescribed a massive dose of inderal. So I went to a different doctor and brought copies of my records- when she saw MS she called and made the appointment herself with the NP. I must have gotten lucky that time.
My MRI was of my brain and C-spine with and without contrast. Since it has been a year I know I need to go for another one. I am also going to ask the NP about a Lumbar Puncture. The NP is the one who has ordered almost everything, so I think she would be willing to order it if I can get back on medicaid. I will call tomorrow and find out about starting the process.
I am lucky that my husband is able to go to my appointments with me- he has been wonderful, not only does he stand up for me he is also able to tell the doctors how I am at the end of a day or after I have done too much.
I will work on a timeline- it is so intimidating to think about- but I know it would be well worth it in the end.
Thank you again and I hope you are doing well.
I went to the Ophthalmologist today and he thinks it is Optic Neuritis. He can't see it- he thinks it is in a nerve further back than is currently visible and thinks it is in the early stages. I made an appointment to go back next week, though he said to call and come in sooner if my vision starts to go before then. He gave me some eye drops for inflamation. I left a message with my NP letting her know.
My eye pain right now is pretty bad- so I may have to write some now and some later. I hope that is okay.
My legs start out relatively fine- they definitely get worse the more I use them (I forgot to mention that I am now having weakness on both sides- though it is still worse on the right side). The right leg is slightly smaller and shaped different- but it hasn't really changed in the past 9 months. After a while they just feel heavy and unsteady. My balance is off, too, so I start looking drunk- it is embarrassing.
I still have trouble walking on my heels, other than that I am much better than I was last year. Yes, the laughing inappropriately makes me feel very off- it is hard to explain almost- I absolutely hate it but have no control over it. It is usually in high anxiety situations. As far as laughing in the ER- I actually had an awesome doctor- when I started laughing he turned to my husband and said "you need to get her to a neurologist as quick as possible. This could be MS." Then he wrote MS in my chart. When I went to the first doctor after the ER without my records they said anxiety and prescribed a massive dose of inderal. So I went to a different doctor and brought copies of my records- when she saw MS she called and made the appointment herself with the NP. I must have gotten lucky that time.
My MRI was of my brain and C-spine with and without contrast. Since it has been a year I know I need to go for another one. I am also going to ask the NP about a Lumbar Puncture. The NP is the one who has ordered almost everything, so I think she would be willing to order it if I can get back on medicaid. I will call tomorrow and find out about starting the process.
I am lucky that my husband is able to go to my appointments with me- he has been wonderful, not only does he stand up for me he is also able to tell the doctors how I am at the end of a day or after I have done too much.
I will work on a timeline- it is so intimidating to think about- but I know it would be well worth it in the end.
Thank you again and I hope you are doing well.
Hi, I spent yesterday asleep until almost 5pm and today had family over. I reread your post. I'm going to repeat quite a bit of what you wrote to make sure I under stand it. If I misstate something make sure you let me know. As I said before, you have been treated shamelfully by several of the doctors you went to for help. I am so sorry about that. It sounds like the NP from the MS clinic is securely on your side. That is wonderful. It remains to be seen, though if you can get anywhere in that clinic given the closed mind (perhaps) of the head neuro guy. I'm so glad you husband was along to insist that he had dismissed you without a thorough exam. The neuromuscular doc dismissed you outright. "Keeping busy" is not a prescription for an undiagnosed neuro disorder. The Physical Therapist and her report will be an important piece in your file of "positive findings," along with the NP's various clinic notes.
Weakness and twitching always bring up ALS. What makes me think it in NOT ALS is that you also have quite a bit of sensory defect (tingling and burning) the cranial nerve involvement (smelling and vision), the mental fogginess, and the dizziness, which is a brainstem dysfunction. I do need to ask if the right leg with the twitches has become very weak all the time or if it starts out okay (for example the first step or two on the stairs is okay) but then with use, the right leg fatigues quickly and begins shaking. You say there is no atrophy. You don't see the thighs and calves getting smaller in size?
In ALS, the twitches occur LATE in the illness after the muscles involved have become very weak and atrophied.
When you were in the ER, it is clear that your neurological exam was grossly abnormal. Do you still have trouble walking on toes or heels or backwards? Your comment about inappropriate laughter I felt was very interesting. In MS one of the neurologic symptoms, called the "pseudo-bulbar effect" is sudden, inappropriate laughter or weepiness. Though it occurs in other illnesses and in psychiatric disorders, it is very often seen in MS. It's a disruption of the part of the brain which affects mood, like the higher incidence of depression and suicide in MS. It looks to an outsider as if you are on drugs or are psychotic. And it feels totally weird. I have this problem, but it manifests itself on the suddenly hysterically weepy side. (I find myself feeling horribly sad and desperate, yet also aware that what triggered it wasn't that big a deal????)
Several doc's have said you were anxious. I would imagine so!!! So would they be. But I strongly suspect you have anxiety because you feel very ill and are very frightened. Do not let anyone in the medical profession convince you that these symptoms are from anxiety, but rather the other way around! The anxiety is caused by the disabling symptoms! Because of the emotional response that you are having (appropriate or not) I think you need an advocate with you at doctors appointments to speak out for you like your husband did with the neurologist.
You had a MRI. I assume it was of the brain. Did it include the C-spine and T-spine? And was it done with and without contrast. You need all of these. Yes, initial MRI's can be negative early in the disease or you can have lesions too small to be picked up right now. This also happened to me and to others here in this forum. The MRI's should be repeated in 1 to 3 months following the first and done on the best MRI machine available, and with contrast. The CT is almost useless in the diagnosis of MS. I can't say you have MS, but you have something very definitely, and MS is a real possibility.
You also need an LP (spinal tap). Can you get this far in the work up with the NP? Yes, you need to get back on Medicaid. One source of help which might be available to you is to contact your chapter of the MS Society. They have advocates to help people with obtaining work up and care. Here is the site to go to to get in touch with the chapter nearest you:
http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage
You need to get you hands on copies of the reports from the MS NP, the Physical Therapist and the MS Neurologist. You also need hard copies of the reports from the MRI, EEG, EMG. EEG's are often abnormal in MS. I hope by now you have had your eyes checked. You'll need another Visual Evoked Potential to rule out Optic Neuritis.
I want you to stay close with us here. This is a really scary time for you and your family. Several people here are going through exactly the same thing and some of us have already been through it. You are not and will not go crazy and you are not alone!
One more thing (Isn't there always?) In the ER the laughing counted against you by making you look suspicious for drugs. You need to "use" it as part of your complaints when you talk to people. If you bring it up first as a prolem you change their whole perception. Tell the doctors up front that this happens to you - the inappropriate laughter and tears if that happens, too. Tell them it's not like you and is worrisome. Here is a link to the MS Society site and it's discussion of some of the emotional aspects of MS. Scroll down the page until you come to the paragraph labled "Emotional lability" (which discusses why people with MS often have wide and severe swings in mood), and the next paragraph "Pseudobulbar effect" which discusses the inappropriate laughter seen in MS. I know you don't want MS and I cannot diagnose it in you, but you do want answers and a name for your problem if you are normal (like us). I hope it is reassuring to find that there could be a reason for your emotions.
I hope you're doing well today. I'd love to see you read the posts about the usefulness of an Illness TimeLine, and consider writing one up. Also I'll be looking for the answers to my questions.
Quix
Weakness and twitching always bring up ALS. What makes me think it in NOT ALS is that you also have quite a bit of sensory defect (tingling and burning) the cranial nerve involvement (smelling and vision), the mental fogginess, and the dizziness, which is a brainstem dysfunction. I do need to ask if the right leg with the twitches has become very weak all the time or if it starts out okay (for example the first step or two on the stairs is okay) but then with use, the right leg fatigues quickly and begins shaking. You say there is no atrophy. You don't see the thighs and calves getting smaller in size?
In ALS, the twitches occur LATE in the illness after the muscles involved have become very weak and atrophied.
When you were in the ER, it is clear that your neurological exam was grossly abnormal. Do you still have trouble walking on toes or heels or backwards? Your comment about inappropriate laughter I felt was very interesting. In MS one of the neurologic symptoms, called the "pseudo-bulbar effect" is sudden, inappropriate laughter or weepiness. Though it occurs in other illnesses and in psychiatric disorders, it is very often seen in MS. It's a disruption of the part of the brain which affects mood, like the higher incidence of depression and suicide in MS. It looks to an outsider as if you are on drugs or are psychotic. And it feels totally weird. I have this problem, but it manifests itself on the suddenly hysterically weepy side. (I find myself feeling horribly sad and desperate, yet also aware that what triggered it wasn't that big a deal????)
Several doc's have said you were anxious. I would imagine so!!! So would they be. But I strongly suspect you have anxiety because you feel very ill and are very frightened. Do not let anyone in the medical profession convince you that these symptoms are from anxiety, but rather the other way around! The anxiety is caused by the disabling symptoms! Because of the emotional response that you are having (appropriate or not) I think you need an advocate with you at doctors appointments to speak out for you like your husband did with the neurologist.
You had a MRI. I assume it was of the brain. Did it include the C-spine and T-spine? And was it done with and without contrast. You need all of these. Yes, initial MRI's can be negative early in the disease or you can have lesions too small to be picked up right now. This also happened to me and to others here in this forum. The MRI's should be repeated in 1 to 3 months following the first and done on the best MRI machine available, and with contrast. The CT is almost useless in the diagnosis of MS. I can't say you have MS, but you have something very definitely, and MS is a real possibility.
You also need an LP (spinal tap). Can you get this far in the work up with the NP? Yes, you need to get back on Medicaid. One source of help which might be available to you is to contact your chapter of the MS Society. They have advocates to help people with obtaining work up and care. Here is the site to go to to get in touch with the chapter nearest you:
http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage
You need to get you hands on copies of the reports from the MS NP, the Physical Therapist and the MS Neurologist. You also need hard copies of the reports from the MRI, EEG, EMG. EEG's are often abnormal in MS. I hope by now you have had your eyes checked. You'll need another Visual Evoked Potential to rule out Optic Neuritis.
I want you to stay close with us here. This is a really scary time for you and your family. Several people here are going through exactly the same thing and some of us have already been through it. You are not and will not go crazy and you are not alone!
One more thing (Isn't there always?) In the ER the laughing counted against you by making you look suspicious for drugs. You need to "use" it as part of your complaints when you talk to people. If you bring it up first as a prolem you change their whole perception. Tell the doctors up front that this happens to you - the inappropriate laughter and tears if that happens, too. Tell them it's not like you and is worrisome. Here is a link to the MS Society site and it's discussion of some of the emotional aspects of MS. Scroll down the page until you come to the paragraph labled "Emotional lability" (which discusses why people with MS often have wide and severe swings in mood), and the next paragraph "Pseudobulbar effect" which discusses the inappropriate laughter seen in MS. I know you don't want MS and I cannot diagnose it in you, but you do want answers and a name for your problem if you are normal (like us). I hope it is reassuring to find that there could be a reason for your emotions.
I hope you're doing well today. I'd love to see you read the posts about the usefulness of an Illness TimeLine, and consider writing one up. Also I'll be looking for the answers to my questions.
Quix
Hi, giventhat I've let some people down by not getting to them I want to write and tell you that I still intend to answer you. I hope this weekend. I reread your posts. Are you still able to work? I can't believe that in our country we still leave people like you out in the cold without health care.
I want you to begin working on a timeline. There is so much going on. If you would look at Timeline 101 and talk to Want to feel well!!! She'll hlep you. The reports from the PT and from the neuromuscualr doc give you real credibility, and YES you need a 2nd opinion! I'll write more tomorrow. Currently I am worried about your eye pain and the possibility of optic neuritis. If theis is ON and is MS you need treatment now (IV steroids) to help preserve your vision. It's 3 days since you reported that. If the pain is still there you need to be seen in the ER. I'm sorry, I know you don't have insurance, but your eyesight is precious.
Talk to you in the am. Quix
I want you to begin working on a timeline. There is so much going on. If you would look at Timeline 101 and talk to Want to feel well!!! She'll hlep you. The reports from the PT and from the neuromuscualr doc give you real credibility, and YES you need a 2nd opinion! I'll write more tomorrow. Currently I am worried about your eye pain and the possibility of optic neuritis. If theis is ON and is MS you need treatment now (IV steroids) to help preserve your vision. It's 3 days since you reported that. If the pain is still there you need to be seen in the ER. I'm sorry, I know you don't have insurance, but your eyesight is precious.
Talk to you in the am. Quix
Thank you both for the warm welcome. I don't think that many of these doctors realize how much these symptoms change our lives. I have struggled so much to come to terms with my new limits. I know I should go back to the NP and have some tests redone- but I hate walking away feeling crazy.
jenn- I am trying to figure out what to do about insurance. I need to get life insurance before I go back too. Maybe I should do that this weekend.
Quix-thank you for all the time and effort you give to everyone here. You cannot know how much it means to us when we are scared and feeling alone.
jenn- I am trying to figure out what to do about insurance. I need to get life insurance before I go back too. Maybe I should do that this weekend.
Quix-thank you for all the time and effort you give to everyone here. You cannot know how much it means to us when we are scared and feeling alone.
Hi, I'm glad you found our forum. We seem to specialize in people who have many strange, MS-like symptoms and a negative initial workup, so you're in the right place. We also have a huge number who have been treated shamefully by the medical profession, especially neurologists. I cringe for my profession, though I am quite aware of some of the cruel, self-centered egos that it holds. I'm sorry you have encountered such nasty ones. We call them "evil neuros" here.
I want to give an in depth answer to you, because you have so much going on. I disagree that it sounds like ALS. You have too much sensory stuff going on. ALS is purely motor. I can't do it now, but I've read your post twice, I need to take some notes and put together a good reply. Your episodes of in appropriate laughter may very well be a part of your disease process. Docs may well misread them and misdiagnosis psychiatric disorders or even suspect drug use. It's a well known part of MS (and maybe of other disorders, I'm not sure) but I'll talk about it later.
But, you have entered with an honary membership to our Greek House Hypo Gamma Chondria - because you've already been treated like you were crazy. Join the club, ask questions and stick around. We have good people here.
Quix
I want to give an in depth answer to you, because you have so much going on. I disagree that it sounds like ALS. You have too much sensory stuff going on. ALS is purely motor. I can't do it now, but I've read your post twice, I need to take some notes and put together a good reply. Your episodes of in appropriate laughter may very well be a part of your disease process. Docs may well misread them and misdiagnosis psychiatric disorders or even suspect drug use. It's a well known part of MS (and maybe of other disorders, I'm not sure) but I'll talk about it later.
But, you have entered with an honary membership to our Greek House Hypo Gamma Chondria - because you've already been treated like you were crazy. Join the club, ask questions and stick around. We have good people here.
Quix
I am so sorry to hear about what you are going through. I am not a doctor, nor have I been diagnosed with MS. I am a 29 year old nursing student who is having many of the same symptoms as you and struggling to get a diagnosis. I do know that MS is not as clear cut a disease to diagnose as some neuro's might make you think. I have had two MRI's in the past four years and am now seeing my third neuro. The neuro I am seeing now is an MS specialist. I have enough of the classic symptoms of MS for her to want to repeat my MRI a third time and do an EEG. She is even talking about doing a lumbar puncture.
Many of your symptoms do sound very characteristic of MS to me. The hard thing is that most MRI machines just aren't sensitive enough to pick up the lesions. If I were you, I would push for a lumbar puncture. I understand your predicament with not having insurance, though. Can you not get back on Medicaid? It would really be to your advantage to find some way to obtain health insurance or government assistance before you are diagnosed with something serious. Otherwise, your condition will be considered pre-existing and will not be covered in the future even when you do get insurance. It sounds to me like you have something pretty serious going on, and that is going to entail a lot of tests, treatments, and medications. I am getting frustrated for you just thinking about your situation!
Whatever you do, do not let them tell you that it is anxiety! I swear I get so angry when I hear about yet another doctor throwing the word anxiety out there just because they don't instantly know what is wrong with you! Anyway, off of my soap box. I truly hope that you get the help and attention you need. Hopefully Quixotic will be able to respond to your post with some words of wisdom. She is very knowledgeable, but i know she hasn't been feeling well lately. Give her a couple of days to resond. Let me know if you need anything!
Jenn
Many of your symptoms do sound very characteristic of MS to me. The hard thing is that most MRI machines just aren't sensitive enough to pick up the lesions. If I were you, I would push for a lumbar puncture. I understand your predicament with not having insurance, though. Can you not get back on Medicaid? It would really be to your advantage to find some way to obtain health insurance or government assistance before you are diagnosed with something serious. Otherwise, your condition will be considered pre-existing and will not be covered in the future even when you do get insurance. It sounds to me like you have something pretty serious going on, and that is going to entail a lot of tests, treatments, and medications. I am getting frustrated for you just thinking about your situation!
Whatever you do, do not let them tell you that it is anxiety! I swear I get so angry when I hear about yet another doctor throwing the word anxiety out there just because they don't instantly know what is wrong with you! Anyway, off of my soap box. I truly hope that you get the help and attention you need. Hopefully Quixotic will be able to respond to your post with some words of wisdom. She is very knowledgeable, but i know she hasn't been feeling well lately. Give her a couple of days to resond. Let me know if you need anything!
Jenn
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