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Heather3418, Quixotic1, Super_sally888, pennst8r
Hi, I know you all are going to get really sick of me, but these last eleven months have been sure torture for me. I find a piece of mind, everytime that I log onto this site. I finally feel that I have the support of others that have and still are experiencing what I am. My loved ones, and my physicians try so hard to comfort me, but it is impossible for the to understand the seriousness of it. That is unless they have experienced it as well. I know that you all have experienced this before. I am so nervous, yet so ready to put a name to the way I have been feeling. At least I feel like I am ready, I noticed this last month, the days have been really long and unbarable. I am waiting to have tests done, as well as the results of other tests. I do not understand what is wrong with me, but I know one thing, I try to look at things positively. But, whoa, that has been impossible for me to do. Like I have mentioned before, I have been experiencing a whirlwind of symptoms, some that are bareable, and others that make me want to pull my hair out. Anymore I cannot stand to be touched by anyone, it just sends electrical impulses running through my body. Lord knows, I always said that I wanted to wait to settle down, but now who would really want me. I have been feeling much like a burden to those I love, and even though they say they love, and stand behind me, I still have trouble accepting this. With my symptoms, WHAT DO YOU THINK MY CHANCES OF HAVING MS ARE, on a scale of 1 to 10? I am a big girl, I think, I think that I can handle it, lol. I have also lost a lot of joys in my life, the things I once adored, seem to feel like chores anymore, I hate this feeling. On top of everything, I now have to wait a little over a week, to have the one test I dread having (LP). Then, with the holidays, I will have to wait even longer for the results. WHAT COPING MECHANISMS DID YOU ALL USE TO GET YOU THROUGH THOSE LONG, HARD MONTHS? HOW SERIOUS IS AN LP, IN DIAGNOSING DISEASES? AND WHAT DOES MY NEURO HOPE TO GET OUT OF THIS LP?
Tihe would stick the entirety of my body with two different objects. By doing this, he was hoping that I would be able to decipher between the two objects. Unfortunately I was unable to do this on my right side AT ALL. The headaches, I thought, and still do believe they come from my poor eyesight. However, my first Neuro, who I must say is a complete pain prescribed Pamelor twice daily for them.
Timeline of Symptoms – as they started, these are guestimates, kind of hard for me to remember the exact time things started:
January – March:
Numbness & tingling in right leg, headaches, extreme fatigue, & difficulty swallowing. During this time, the numbness & tingling was the most extreme.
April – May
Previous symptoms + numbness & tingling in right side of body, burning sensations that encompassed any & all muscle, decreased muscular control.
June – October
Muscle weakness, extreme stiffness, tingling and burning sensations start in the rest of my body, shaky right hand (intention tremor?).
August – present:
Chronic Urinary Tract Infections from retention, I started noticing a decrease in urination. I would go some days without urinating at all, and then others where I would go no more than once or a twice a day. I was put on 80 mg. of Lasix and Potassium as well. This is also when I noticed a major change in my swelling, my doctor said that my ankles and feet were three times the normal size from fluid retention.
September – present:
Extreme tingling sensations in top portion of head, extreme nausea and vomiting. When the tingling is at its peak, so is the nausea and vomiting.
As far as the depression goes, I really did not start noticing any depression until after I was put on my second anti-depressant. I do not really know if I was beforehand, but my Rheumy sure thought I was. I noticed that things I once loved to do soon became chores: shopping, walking, spending time with loved ones, watching tv. I lost all desire to do anything but sleep, in August alone I had lost nearly 20 pounds. I cannot exactly pinpoint the time when the backpain increased either. But, because I walk with a gait, and rely on my left leg for support I become overly tired and the pain sinks in (not only in my back, but in my legs as well). I now can walk only a few yards without rest, especially if I have had to stand for even a few minutes. I have never really had the best of memory, but I did notice a decline in my ability to remember even the slightest things in late March or early April. I do not know if it is because of a disease process, or if it is because I always have so much on my mind since onset of my symptoms. I worked with, and hoped to be able to return soon, with special needs children age 3 – 6. In my line of work patience, concentration, and the ability to think clearly is a virtue. I noticed in August a decreased ability to cope with the noise, the stress, the physical responsibility that was placed on me when their parents left every morning. I was unable to restrain them, to run after them when they were obviously during something they had no business. Heck, a baby could crawl faster than I could walk. So, my doctor and I finally came to a conclusion that I needed to go on medical leave. This alone almost sent me spiraling into a tunnel of doom. I found myself for the first time, truly depressed, clinically depressed even. My new, highly competent Neuro is still unsure of what could be causing my situation, but hopefully the uncertainty will soon be a thing of the past. However, after doing pretty extensive Neurological tests, he noticed that I am unable to control my muscles, I was unable to tighten or relax them. He also found that I had a positive Babinski reflex in my right leg. He then ordered an MRI of my C-Spine and Thoracic Spine with and without contrast and a Lumbar Puncture. Because of my age and situation, I feel that my Neuro was a little afraid to tell me what he was really thinking, he is one of my best & most caring physicians. He told me that he was unsure if what I was experiencing was Neurological. A few days later, I went to my normal scheduled appointment with my General Practitioner, he also agreed with the Babinski Reflex, only to read in the letter from my Neuro and his NP that they both suggested MS as a diagnosis. SO, WHERE DO I GO FROM HERE? I am so nervous about the LP that I actually cancelled it. IS IT REALLY WORTH KNOWING?
Tihe would stick the entirety of my body with two different objects. By doing this, he was hoping that I would be able to decipher between the two objects. Unfortunately I was unable to do this on my right side AT ALL. The headaches, I thought, and still do believe they come from my poor eyesight. However, my first Neuro, who I must say is a complete pain prescribed Pamelor twice daily for them.
Timeline of Symptoms – as they started, these are guestimates, kind of hard for me to remember the exact time things started:
January – March:
Numbness & tingling in right leg, headaches, extreme fatigue, & difficulty swallowing. During this time, the numbness & tingling was the most extreme.
April – May
Previous symptoms + numbness & tingling in right side of body, burning sensations that encompassed any & all muscle, decreased muscular control.
June – October
Muscle weakness, extreme stiffness, tingling and burning sensations start in the rest of my body, shaky right hand (intention tremor?).
August – present:
Chronic Urinary Tract Infections from retention, I started noticing a decrease in urination. I would go some days without urinating at all, and then others where I would go no more than once or a twice a day. I was put on 80 mg. of Lasix and Potassium as well. This is also when I noticed a major change in my swelling, my doctor said that my ankles and feet were three times the normal size from fluid retention.
September – present:
Extreme tingling sensations in top portion of head, extreme nausea and vomiting. When the tingling is at its peak, so is the nausea and vomiting.
As far as the depression goes, I really did not start noticing any depression until after I was put on my second anti-depressant. I do not really know if I was beforehand, but my Rheumy sure thought I was. I noticed that things I once loved to do soon became chores: shopping, walking, spending time with loved ones, watching tv. I lost all desire to do anything but sleep, in August alone I had lost nearly 20 pounds. I cannot exactly pinpoint the time when the backpain increased either. But, because I walk with a gait, and rely on my left leg for support I become overly tired and the pain sinks in (not only in my back, but in my legs as well). I now can walk only a few yards without rest, especially if I have had to stand for even a few minutes. I have never really had the best of memory, but I did notice a decline in my ability to remember even the slightest things in late March or early April. I do not know if it is because of a disease process, or if it is because I always have so much on my mind since onset of my symptoms. I worked with, and hoped to be able to return soon, with special needs children age 3 – 6. In my line of work patience, concentration, and the ability to think clearly is a virtue. I noticed in August a decreased ability to cope with the noise, the stress, the physical responsibility that was placed on me when their parents left every morning. I was unable to restrain them, to run after them when they were obviously during something they had no business. Heck, a baby could crawl faster than I could walk. So, my doctor and I finally came to a conclusion that I needed to go on medical leave. This alone almost sent me spiraling into a tunnel of doom. I found myself for the first time, truly depressed, clinically depressed even. My new, highly competent Neuro is still unsure of what could be causing my situation, but hopefully the uncertainty will soon be a thing of the past. However, after doing pretty extensive Neurological tests, he noticed that I am unable to control my muscles, I was unable to tighten or relax them. He also found that I had a positive Babinski reflex in my right leg. He then ordered an MRI of my C-Spine and Thoracic Spine with and without contrast and a Lumbar Puncture. Because of my age and situation, I feel that my Neuro was a little afraid to tell me what he was really thinking, he is one of my best & most caring physicians. He told me that he was unsure if what I was experiencing was Neurological. A few days later, I went to my normal scheduled appointment with my General Practitioner, he also agreed with the Babinski Reflex, only to read in the letter from my Neuro and his NP that they both suggested MS as a diagnosis. SO, WHERE DO I GO FROM HERE? I am so nervous about the LP that I actually cancelled it. IS IT REALLY WORTH KNOWING?
Nausea and Vomiting are NOT symptoms of MS. You CAN have nausea so severe as to result in vomiting, from the dizziness of MS, the balance problems and the like; but nausea and vomiting as a primary symptom are not related to MS. They are secondary, for some people.
Please read the symptoms below. This was taken directly from the MS Society Website:
Bladder Dysfunction
Bowel Dysfunction
Changes in Cognitive Function, including problems with memory, attention, and problem-solving
Dizziness and Vertigo
Depression and other Emotional Changes
Fatigue (also called MS lassitude)
Difficulty in Walking and/or Balance or Coordination Problems
Abnormal sensations such as Numbness or “pins and needles” Numbness
Pain
Optic Neuritis
Less Common Symptoms
Headache
Hearing Loss
Itching
Seizures
Speech and Swallowing Disorders
Dysphagia (Swallowing Problems)
Tremor
Please read the symptoms below. This was taken directly from the MS Society Website:
Bladder Dysfunction
Bowel Dysfunction
Changes in Cognitive Function, including problems with memory, attention, and problem-solving
Dizziness and Vertigo
Depression and other Emotional Changes
Fatigue (also called MS lassitude)
Difficulty in Walking and/or Balance or Coordination Problems
Abnormal sensations such as Numbness or “pins and needles” Numbness
Pain
Optic Neuritis
Less Common Symptoms
Headache
Hearing Loss
Itching
Seizures
Speech and Swallowing Disorders
Dysphagia (Swallowing Problems)
Tremor
Forgot to add this......It takes a few days for the Prilosec to work, it has to build up in your system to get maximum results. Also "Please" read the package, warnings, side effects and such, and do not take for longer than the recommended amount of days. I have never experienced any side effects from the medication.
Hi Thester,
Sally and Heather are right. You do have to wait, and it's not an easy do, but try to distract yourself. Not in a stressful way, but just do some things that give you peace, and keep you calm, while re-focusing on something else. The symptoms will still rear themselves, but it may make them more manageable, or bearable.
Remember, even when you find out for sure what it is, or is not going on, there may not be a magic pill you can take to make it go away. With MS, even the DMT's do not make symptoms clear.
I'd reschedule that LP. Your Neuro seems to be working toward some answers. If he/she is handling you with kit gloves, and you'd rather them not. Just say so, I'm sure he/she can appreciate. Just know that there might not be an answer yet.
We're here for you,
Be well,
SL
Sally and Heather are right. You do have to wait, and it's not an easy do, but try to distract yourself. Not in a stressful way, but just do some things that give you peace, and keep you calm, while re-focusing on something else. The symptoms will still rear themselves, but it may make them more manageable, or bearable.
Remember, even when you find out for sure what it is, or is not going on, there may not be a magic pill you can take to make it go away. With MS, even the DMT's do not make symptoms clear.
I'd reschedule that LP. Your Neuro seems to be working toward some answers. If he/she is handling you with kit gloves, and you'd rather them not. Just say so, I'm sure he/she can appreciate. Just know that there might not be an answer yet.
We're here for you,
Be well,
SL
Just wanted to add something to the already wonderful information Heather has given you, from my own experience. The nausea and vomiting may not be a direct symptom of MS, but if you have a sensitive stomach like myself, then it very well could be caused from the MS in two different ways that I have experienced.
1) Nausea and Vomiting brought on by the anxiety of not knowing and the constant waiting.
2) Muscle Spasms in the stomach, especially if you experience muscle spasms else where.
From my experience the last several months, i have had the nausea and vomiting from both of these reasons. Comes on suddenly and last several days. But!!! I have also had the muscle spasms in my stomach for about 20 years, comes and goes at will, usually occuring several times a year, and lasting for a week or more. I can actually feel the spasms, which causes an over production of stomach acid, which causes the nausea. The spasms can also be triggered by anxiety. I have been tested for ulcers with negative results, doctors say its just an over active stomach. The last two months I have also been asking myself if this could be a symptom of MS since it is another spastic muscle? I have found that the over the counter Prilosec works wonders to control the spasms, along with Extra strength Rolaids when needed.
1) Nausea and Vomiting brought on by the anxiety of not knowing and the constant waiting.
2) Muscle Spasms in the stomach, especially if you experience muscle spasms else where.
From my experience the last several months, i have had the nausea and vomiting from both of these reasons. Comes on suddenly and last several days. But!!! I have also had the muscle spasms in my stomach for about 20 years, comes and goes at will, usually occuring several times a year, and lasting for a week or more. I can actually feel the spasms, which causes an over production of stomach acid, which causes the nausea. The spasms can also be triggered by anxiety. I have been tested for ulcers with negative results, doctors say its just an over active stomach. The last two months I have also been asking myself if this could be a symptom of MS since it is another spastic muscle? I have found that the over the counter Prilosec works wonders to control the spasms, along with Extra strength Rolaids when needed.
I have forgotten, how old are you? Forgive me if you have said so before. As you know there are so many posters, I have trouble keeping up sometimes.
Sweetheart, your timeline is suggestive (as I said in my previous post to you) of one continuous "attack." I see no remissions. This is not typical of MS, unless it is a progressive course from the start. In that case, you almost always have worsening of symptoms.
The nasuea and vomiting are NOT signs of MS. Do you have signs of MS, yes you do? do you have MS? I can't diagnosis you. Only your doctors can. Diagnosing MS has many variables. Sign, symptoms, relapses, remissions, positive testing of some kind whether on exam or MRI, LP's...and so on.
Alot of people find when they are going through their period of diagnosis that they become depressed. One thing I am sure of, it's that you are depressed. I strongly suggest medication and some form of professional counseling, just like I received. So I am not suggesting something that I have not already been through myself.
When we become totally forcued on our bodies, we become aware of every twinge, ache or pain and if MS is of our mindset, that's what we attirbute it all too. Are you the only one that has done this? Heck no. I have done it myself. Where the danger comes in, is blaming everything we are experiencing on MS or our disease. If we do that, we will miss inportant things things that we need immediate care for. Bad infections and the like.
How do we all manage to get through all this waiting? In my case, I lean on my friends, I talk to anyone who will listen and I pray. Without God in my life, I cannot stand alone. This is always a personal preference, so I do not shove my religion done anyone's throat. I am not here to alienate you, I am here to offer you support, caring and comfort.
I can give you MY experiences with this disease, but I cannot diagnose you. None of us can. Have faith and trust in your doctor's. I feel that they are doing the appropriate testing. You have to trust them, until they give you reason not to.
In the meantime, you have to wait. While you do that you have the support and caring of those on this forum. Lean on us...we have big shoulders. Most of all, know that you are not alone.
Heather
Sweetheart, your timeline is suggestive (as I said in my previous post to you) of one continuous "attack." I see no remissions. This is not typical of MS, unless it is a progressive course from the start. In that case, you almost always have worsening of symptoms.
The nasuea and vomiting are NOT signs of MS. Do you have signs of MS, yes you do? do you have MS? I can't diagnosis you. Only your doctors can. Diagnosing MS has many variables. Sign, symptoms, relapses, remissions, positive testing of some kind whether on exam or MRI, LP's...and so on.
Alot of people find when they are going through their period of diagnosis that they become depressed. One thing I am sure of, it's that you are depressed. I strongly suggest medication and some form of professional counseling, just like I received. So I am not suggesting something that I have not already been through myself.
When we become totally forcued on our bodies, we become aware of every twinge, ache or pain and if MS is of our mindset, that's what we attirbute it all too. Are you the only one that has done this? Heck no. I have done it myself. Where the danger comes in, is blaming everything we are experiencing on MS or our disease. If we do that, we will miss inportant things things that we need immediate care for. Bad infections and the like.
How do we all manage to get through all this waiting? In my case, I lean on my friends, I talk to anyone who will listen and I pray. Without God in my life, I cannot stand alone. This is always a personal preference, so I do not shove my religion done anyone's throat. I am not here to alienate you, I am here to offer you support, caring and comfort.
I can give you MY experiences with this disease, but I cannot diagnose you. None of us can. Have faith and trust in your doctor's. I feel that they are doing the appropriate testing. You have to trust them, until they give you reason not to.
In the meantime, you have to wait. While you do that you have the support and caring of those on this forum. Lean on us...we have big shoulders. Most of all, know that you are not alone.
Heather
Girl,
one thing you need to know is that anticipation of something you are dreading is usually way worse that that thing actually is.
You get out there and rebook the LP. Given everything else you need to know the results of this. Hopefully this will seal the picture and you can start treatment.
Yes. You are having a really tough time now. Well, way more than tough, but you need to see this through and that will involve something unpleasant (the LP), but that will be over quickly.
Hey you take care and keep us informed of how things are going.
Sally
one thing you need to know is that anticipation of something you are dreading is usually way worse that that thing actually is.
You get out there and rebook the LP. Given everything else you need to know the results of this. Hopefully this will seal the picture and you can start treatment.
Yes. You are having a really tough time now. Well, way more than tough, but you need to see this through and that will involve something unpleasant (the LP), but that will be over quickly.
Hey you take care and keep us informed of how things are going.
Sally
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