Aa
Feeling so Desperate
Hi All,
I am a 41 year old woman & for the past 20 years I have suffered with extreme exhaustion & weakness in my upper arms , my neck pain was so bad it felt like my neck literally couldn't support my head & I would have to lay down.. No reason was ever found I am still the same to this day. .I had vertigo on & off over the last 4 years then last Sep 09 I was dx with trigeminal neualgia . That was resolved taking Tegratol. I began to notice my memory was gone really bad, I felt fogged up in my head. Last month I had a bad headache & with it a deep throbbing ache in my underarm, the headache went but the underarm pain continued. Over the next few days I had odd sensations like freezing water being poured on my leg , a buzzing tingling feeling over my right hip area , my right upper arm and left lower leg would suddenly jerk out , twitching in my upper arms and generally all over .I began stumbling when walking , feeling dizzy & my vision was blurry but not to the point that I couldnt make things out, just slightly blurred, I now need my glasses all day instead of when just reading, I was seeing white little stars or lights in my peripheral vision.
I also had a sensation of something vibrating in my abdomen , one night I moved my head & it felt like a thousand electric shocks at the top of my spine that travelled up into my head ,that one frightened me as it was so painful. I went to my GP & he thinks it is an overload of the nervous system & put me on Lyrica 75mg twice a day . It does help with the twitches somewhat & I really thought it was going to stop all of my symptoms. But the jerking and twitching return full on after about 8 hours after I take the tablets & I missed the pills one day & it all came back with a vengeance. About a week ago I bent down and the facial pain I had last September hit like an electric shock. The next day my eye began to pain me and my vision became very blurry ,I still have the eye pain. I started looking up my symptoms and to me MS seems like something that needs to be ruled out but I was hoping for anyones opinion of what could possibly be causing all these strange things that are happening to me. I truly would appreciate anyones help as I feel like Im going crazy with all these weird sensations.
I am a 41 year old woman & for the past 20 years I have suffered with extreme exhaustion & weakness in my upper arms , my neck pain was so bad it felt like my neck literally couldn't support my head & I would have to lay down.. No reason was ever found I am still the same to this day. .I had vertigo on & off over the last 4 years then last Sep 09 I was dx with trigeminal neualgia . That was resolved taking Tegratol. I began to notice my memory was gone really bad, I felt fogged up in my head. Last month I had a bad headache & with it a deep throbbing ache in my underarm, the headache went but the underarm pain continued. Over the next few days I had odd sensations like freezing water being poured on my leg , a buzzing tingling feeling over my right hip area , my right upper arm and left lower leg would suddenly jerk out , twitching in my upper arms and generally all over .I began stumbling when walking , feeling dizzy & my vision was blurry but not to the point that I couldnt make things out, just slightly blurred, I now need my glasses all day instead of when just reading, I was seeing white little stars or lights in my peripheral vision.
I also had a sensation of something vibrating in my abdomen , one night I moved my head & it felt like a thousand electric shocks at the top of my spine that travelled up into my head ,that one frightened me as it was so painful. I went to my GP & he thinks it is an overload of the nervous system & put me on Lyrica 75mg twice a day . It does help with the twitches somewhat & I really thought it was going to stop all of my symptoms. But the jerking and twitching return full on after about 8 hours after I take the tablets & I missed the pills one day & it all came back with a vengeance. About a week ago I bent down and the facial pain I had last September hit like an electric shock. The next day my eye began to pain me and my vision became very blurry ,I still have the eye pain. I started looking up my symptoms and to me MS seems like something that needs to be ruled out but I was hoping for anyones opinion of what could possibly be causing all these strange things that are happening to me. I truly would appreciate anyones help as I feel like Im going crazy with all these weird sensations.
Thanks again quixotic1 ,Im going to ask my GP exactly what blood tests were done as he just said all blood tests were normal no infection or inflammation anywhere in the body. Iv had a green discharge from my breasts for about 19 yrs too , no explanation. I have also had unexplained vaginal bleeding for years now , again with no explanation for it . Iv had smear tests come back abnormal once about 8 years ago and had laser treatment but since then all have been normal but the bleeding continues. My cycle had gone down to 24 days , I would have 14 days of bleeding then start all over again 12 days later . now my cycle this month since I started taking the lyrica is gone up to 36 days and I had 7 days of bleeding then it stopped for 5 days and Im now on day 8 of bleeding again. My hormone levels are normal . My Doc says it's the nervous system that regulates the hormones and cycles and that it must be to do with that, he is trying to help as he hasn't been here that long , its the other GP who owns the practice that has basically ignored me all these years. Heck my Son was in a psychosis for 2 yrs & the doc wouldnt listen to me , I was telling him how sick my son was and he would just say he seems fine to me.....until my Son ended up Catatonic and unable to function & he ended up hospitalised for a month. My main Gp ***** no doubt about it , but living in a small Irish Village there isn't much choice.Glad of your help quintox but Ill shut up now as I think I am an anomaly , with way too many things going on in my body ,I'll just poke my way round this forum and see what the story is and with the help of God ill find an answer someday . Don't worry about the medical terms Im quick on the uptake but I guess I thought I knew it all or most of it all , now I know I know nothing.......which is always good to know :-) and with all my ailments I suppose it shows one thing , you can't kill a bad thing as we say here ....
You are very welcome, I'm so pleased that the information helped - especially for someone from my ancestral home.
Your response brings up more things that you should know. And it emphasizes why we can't leap to any conclusions about a diagnosis online.
First, knowing the Family medical History is very important. Your sister has Lupus and your father has Ankylosing Spondylitis. Both of these are classic autoimmune diseases where they know which antibodies are attacking the body. We do know that it is not uncommon for the autoimmune diseases to cluster in a family, so that makes it all the more important to carefully exclude another autoimmune disease as the cause of your problems.
Your dreadful experience with the Rheumatologist is, sadly, all too common. some doctors dictate their reports late and forget what really happened in the exam, so they tend to call everything normal. There is no excuse for this and you WERE lied to. It is a soul-crushing experience for the patient who often feels they look like a fool. What a waste of time the money. In the US we have the right to place a letter of correction in the record or to ask that the doctor revise the report, though this is hard to accomplish often.
However, the morning stiffness really is a hallmark of the rheum diseases. The lab report said you had "mild levels of Lupus". This likely means that your ANA titer is a little elevated. In the US a sizeable percentage of the population has slightly high ANA levels and it is not related to an autoimmune disease. Did the Rheumatologist even send your blood for the marker for AS? This would be a test for the cell marker HLA-B27. It isn't always positive, but it can help if it is.
MS has strong autoimmune features, but it is not classified as a purely autoimmune disease. It has no arthritis associated with it and the "markers of cell activity" (like the sed rate or ESR) or cellular inflammation are not elevated. This might be a key in determining if your problem is more likely MS or one of the rheum diseases.
Your expereience with the TN - Trigeminal Neuralgia sounds like a pretty classic relapse - whether of MS or something else.
To be a little more specific about its incidence I'll give you numbers from the US.
TN occurs in the general population about 1 in 10,000 people - almost always people over 50.
In MS the studies show TN in about 9% or 10% of MS patients. My nuerologist who is brilliant and has dedicated his professional life to treating MS told me firmly that 27% of people with MS will have TN at some point in their course. I think the difference in the higher percentage is that more MS experts are accepting the atypical forms of TN (more constant pain with or without the zaps). Facial pain of all types is incredibly common in MS.
Your constant fatigue AND sleepiness (two separate things) are worrisome and I think you need a sleep study to see if you are not getting efficient sleep. It could be you never get into the deep, restorative phases or that you have some form of sleep apnea. If you tend to "nod off" right in the middle of doing things then the Neurologist should check you for a condition called narcolepsy.
Finally, no one "wants" MS or any other disease. But, we KNOW without a doubt that something is wrong and we want to give it a name. Only then can we stop wondering and suffering from the not knowing - then make a plan to do what we can to treat it. Being in Limboland is far worse than knowing a diagnosis.
When I get to typing very fast, I sometimes forget and use obscure medical terms. Always - anybody - stop me and ask. There are many people here that can help.
A great resource for definitions and discussions of medical conditions is The Merck Manual of Medical Information
http://www.merck.com/mmhe/index.html
Quix
Your response brings up more things that you should know. And it emphasizes why we can't leap to any conclusions about a diagnosis online.
First, knowing the Family medical History is very important. Your sister has Lupus and your father has Ankylosing Spondylitis. Both of these are classic autoimmune diseases where they know which antibodies are attacking the body. We do know that it is not uncommon for the autoimmune diseases to cluster in a family, so that makes it all the more important to carefully exclude another autoimmune disease as the cause of your problems.
Your dreadful experience with the Rheumatologist is, sadly, all too common. some doctors dictate their reports late and forget what really happened in the exam, so they tend to call everything normal. There is no excuse for this and you WERE lied to. It is a soul-crushing experience for the patient who often feels they look like a fool. What a waste of time the money. In the US we have the right to place a letter of correction in the record or to ask that the doctor revise the report, though this is hard to accomplish often.
However, the morning stiffness really is a hallmark of the rheum diseases. The lab report said you had "mild levels of Lupus". This likely means that your ANA titer is a little elevated. In the US a sizeable percentage of the population has slightly high ANA levels and it is not related to an autoimmune disease. Did the Rheumatologist even send your blood for the marker for AS? This would be a test for the cell marker HLA-B27. It isn't always positive, but it can help if it is.
MS has strong autoimmune features, but it is not classified as a purely autoimmune disease. It has no arthritis associated with it and the "markers of cell activity" (like the sed rate or ESR) or cellular inflammation are not elevated. This might be a key in determining if your problem is more likely MS or one of the rheum diseases.
Your expereience with the TN - Trigeminal Neuralgia sounds like a pretty classic relapse - whether of MS or something else.
To be a little more specific about its incidence I'll give you numbers from the US.
TN occurs in the general population about 1 in 10,000 people - almost always people over 50.
In MS the studies show TN in about 9% or 10% of MS patients. My nuerologist who is brilliant and has dedicated his professional life to treating MS told me firmly that 27% of people with MS will have TN at some point in their course. I think the difference in the higher percentage is that more MS experts are accepting the atypical forms of TN (more constant pain with or without the zaps). Facial pain of all types is incredibly common in MS.
Your constant fatigue AND sleepiness (two separate things) are worrisome and I think you need a sleep study to see if you are not getting efficient sleep. It could be you never get into the deep, restorative phases or that you have some form of sleep apnea. If you tend to "nod off" right in the middle of doing things then the Neurologist should check you for a condition called narcolepsy.
Finally, no one "wants" MS or any other disease. But, we KNOW without a doubt that something is wrong and we want to give it a name. Only then can we stop wondering and suffering from the not knowing - then make a plan to do what we can to treat it. Being in Limboland is far worse than knowing a diagnosis.
When I get to typing very fast, I sometimes forget and use obscure medical terms. Always - anybody - stop me and ask. There are many people here that can help.
A great resource for definitions and discussions of medical conditions is The Merck Manual of Medical Information
http://www.merck.com/mmhe/index.html
Quix
Forgot to add that I have so many different little symptoms that it would take forever , like low grade temp throughout the day very much helped with the lyrica, heat intolerance , if heating is on that means Im in more pain & total fatigue,never could take a hot summer. but neither can I take a cold winter I seize up .Headaches ... stumbling... many of the things Iv been reading on here apart from falling down thats never happened. Cramps in my feet lately also. The part of my neck that pains me is right at the top of the spine the ball joint as I call it .. thats where all the electric type pain came from that one night that scared me. Anyway thankyou all .
Quixotic1 I can't thank you enough for your response to me. You are brilliant in your understanding of my symtoms I had no idea that Trigeminal Neuralgia is uncommon in the under 50's. I took the Tegratol for 6 weeks and then decided to stop it and see what happened as I was putting on alot of weight . The pain wasn't bad enough at that point to make me go back on it and after another week or so the pain disappeared altogether.. I didn't have it again until last week. Even though it came back it wasn't constant, an odd stab of electric here and there , I was coping with it , but the eye pain began the following day.
You asked about the weakness and neck pain , well the weakness is an almost constant in my arm's , its only lately that my leg's have begun to feel weak since I had this episode start in January. I do remember about 2 years ago that the tiredness went away for about a month and I thought my God is this real, it was the first time I could ever recall not having tiredness everyday . But it came back . Everyday is different , some days I can go shopping but will have to go to bed for a few hours when I get home, I gave up alcohol 6 years ago as I can't tolerate it at all, we're talking fatigue like Mike Tyson has beat the living daylights out of me, and thats only having a couple of drinks.. I have 6 Children and getting up to get the youngest two out the door for school is a monumental effort. It has always been a problem for me even when my adult kids were small.. I can sleep forever and it makes no difference, I roughly calculate I have spent most of my adult life either asleep or wanting to sleep.
The neck pain began in my 20's , I had been to my Doctor so many time's I gave up. Then 2 year's ago I couldn't take anymore , I said to my GP how I remembered it was 7 year's before that that I had left his practice crying because I had got no where, so he had bloods done which he said showed " significant cell activity" and I was sent to see a Rheumatologist, he twisted me every which way, he said there was resistance on one side of my neck ( whatever that meant ) and said he felt that as my Father has Ankylosing Spondylitis that he thought I probably had a mild form of something Arthritic in the same family as my Dad's illness , maybe a distant cousin of AS he said . I was laid up for 2 days after he examined me I was so sore everywhere.
6 months later no sign of the report from Rheumatologist to my GP so I had to ring his office, the Secretary got my report and said down the phone to me " yes it says trace's of lupus from your bloods that were done" ( my sister has Lupus since her 20's)
She then apologised for the delay and sent it to my GP. One week later My GP reads out the report to me and it said that I had no problems with my neck from the Rheu Dr's physical exam of me, also that I had stated I had no morning stiffness. I just burst into tear's I couldn't believe what he was reading , after everything the rheu dr had said to me , he was now stating the opposite in his write up. I had absolutely stated to him that I had severe morning stiffness in my neck and feet .So I was back to square one. I felt like I was being lied to it affected me that much at the time. This thing whatever it is has taken my life quality for 20 + year's.
After I read your post to me today I felt so encouraged I got on the phone to my GP who had given me the Lyrica, this guy is a new Dr at the practice and only for him I wouldn't even have the Lyrica to help with the twitches , tremors and jerks. I told him I had been in bed all week exhausted and that my eye was uncomfortable with stabbing pains at times.I wanted to see what he would say so I said "shall I just up the Lyrica "( I was planning on jumping down his throat if he didn't offer me some real help:-)... He said no no, Im sending you to see a specialist,
that he wanted to make sure there was no pressure behind the eye and that he wanted to rule SOMETHING else out !
I have to go see him on wednesday & the app for the Specialist will be organised so maybe something will come of it .I don't want MS or anything else, my sister cariies the gene for MS , she was told this when testing was done at the time she was dx with SLE, I don't know if it make's any difference to know that my Dad's first cousin has MS and is now in a wheel chair, I think maybe he is not a close enough relative for it to make any difference to my problem, I just feel if I know what's causing this I can start to manage it better and maybe improve my quality of life for me and also my children. You told me more in one post than any doctor has ever tried to explain to me in 20 year's . I can't thank you enough . Now I just have to try to learn what all the different medical terms mean. Thankyou also grannyhotwheels ( love the name ) and to michelleric for your lovely kind word's.
You asked about the weakness and neck pain , well the weakness is an almost constant in my arm's , its only lately that my leg's have begun to feel weak since I had this episode start in January. I do remember about 2 years ago that the tiredness went away for about a month and I thought my God is this real, it was the first time I could ever recall not having tiredness everyday . But it came back . Everyday is different , some days I can go shopping but will have to go to bed for a few hours when I get home, I gave up alcohol 6 years ago as I can't tolerate it at all, we're talking fatigue like Mike Tyson has beat the living daylights out of me, and thats only having a couple of drinks.. I have 6 Children and getting up to get the youngest two out the door for school is a monumental effort. It has always been a problem for me even when my adult kids were small.. I can sleep forever and it makes no difference, I roughly calculate I have spent most of my adult life either asleep or wanting to sleep.
The neck pain began in my 20's , I had been to my Doctor so many time's I gave up. Then 2 year's ago I couldn't take anymore , I said to my GP how I remembered it was 7 year's before that that I had left his practice crying because I had got no where, so he had bloods done which he said showed " significant cell activity" and I was sent to see a Rheumatologist, he twisted me every which way, he said there was resistance on one side of my neck ( whatever that meant ) and said he felt that as my Father has Ankylosing Spondylitis that he thought I probably had a mild form of something Arthritic in the same family as my Dad's illness , maybe a distant cousin of AS he said . I was laid up for 2 days after he examined me I was so sore everywhere.
6 months later no sign of the report from Rheumatologist to my GP so I had to ring his office, the Secretary got my report and said down the phone to me " yes it says trace's of lupus from your bloods that were done" ( my sister has Lupus since her 20's)
She then apologised for the delay and sent it to my GP. One week later My GP reads out the report to me and it said that I had no problems with my neck from the Rheu Dr's physical exam of me, also that I had stated I had no morning stiffness. I just burst into tear's I couldn't believe what he was reading , after everything the rheu dr had said to me , he was now stating the opposite in his write up. I had absolutely stated to him that I had severe morning stiffness in my neck and feet .So I was back to square one. I felt like I was being lied to it affected me that much at the time. This thing whatever it is has taken my life quality for 20 + year's.
After I read your post to me today I felt so encouraged I got on the phone to my GP who had given me the Lyrica, this guy is a new Dr at the practice and only for him I wouldn't even have the Lyrica to help with the twitches , tremors and jerks. I told him I had been in bed all week exhausted and that my eye was uncomfortable with stabbing pains at times.I wanted to see what he would say so I said "shall I just up the Lyrica "( I was planning on jumping down his throat if he didn't offer me some real help:-)... He said no no, Im sending you to see a specialist,
that he wanted to make sure there was no pressure behind the eye and that he wanted to rule SOMETHING else out !
I have to go see him on wednesday & the app for the Specialist will be organised so maybe something will come of it .I don't want MS or anything else, my sister cariies the gene for MS , she was told this when testing was done at the time she was dx with SLE, I don't know if it make's any difference to know that my Dad's first cousin has MS and is now in a wheel chair, I think maybe he is not a close enough relative for it to make any difference to my problem, I just feel if I know what's causing this I can start to manage it better and maybe improve my quality of life for me and also my children. You told me more in one post than any doctor has ever tried to explain to me in 20 year's . I can't thank you enough . Now I just have to try to learn what all the different medical terms mean. Thankyou also grannyhotwheels ( love the name ) and to michelleric for your lovely kind word's.
I just want to say that I am truly sorry for all that you have gone through and all that you are going through.
I hope you are able to get some further testing done, and are able to get some answers already. You have suffered enough.
Thinking of you,
Michelle
I hope you are able to get some further testing done, and are able to get some answers already. You have suffered enough.
Thinking of you,
Michelle
Hi, Erin, I'm sorry the answers have been slow in coming - both from your doctors and here. Personally I have been feeling too wierd in my head to answer much and have also been glued to the Winter Olympics - a passion I picked up as a child. They are now over, and I will try to be a better presence here on the forum.
It is inconceivable to me that you have gone twenty years with these complaints and have not been sent to a neurologist nor had any MRIs. Your symptoms scream for this to be done. Since they started in your early twenties, I can only imagine that your doctors dismissed them as a "woman's emotional stress or imaginings".
While no one here can diagnose MS I can certainly talk about your problems in the context of MS.
Your first and worst symptom is the weakness and exhaustion in your arms. This can be seen with MS, but generally the legs develop more problems first. This is NOT a rule. MS will follow NO rules religiously. How long do these episodes of weakness and neck pain last? For this symptom alone you should have received an MRI of the cervical spine. I'm surious, are the tendon reflexes in your arms normal? Or are they absent or hyperactive?
The vertigo is a very common symptom in MS. However, it is also one of the most common symptoms that all primary care physicians, ENT specialists and neurologists see. When the episodes became recurrent it should have prompted an evaluation by either an ENT specialist or a neurologist.
The Trigeminal Neuralgia is also very common in MS. However, it is relatively uncommon under the age of 50 in the normal population. It's appearance in a woman in her 30's should have brought up the concern regarding MS, and should have sparked the desire for an MRI of the brainstem (which is done at the same time as one for the brain). Tegretol is the firstline drug recommended for it. You say it helped. That's good. Have you needed to keep taking it or were you able to stop it eventually?
The next flurry of symptoms is looking more and more like a central nervous system demyelinating disease - of which MS is by far the most common - especially in your ethnicity, which I presume is Irish. One of the risk factors for MS is young adults of Northern European heritage.
The mind fog and poor memory is common to many of the autoimmune disorders, MS, Firbromyalgia, ME - plus anemia and thyroid problems. You have had some of the work up for these.
The sudden arm and leg jerking sounds like either Myoclonus or Hemi-Ballism. Both of these are movement disorders. Movement disorders of all types are common in MS. For more info on these you can look at my favorite site for discussion of all the major movement disorders:
wemove.org
Hmmm, we are seeing a pattern here. Apparently your doctors are not. :((
The pain and odd sensations felt here and there, like the sensation of cold water being splashed on your hip are classic paresthesias. These are "wrong" signals being sent from sensory nerves. The pain under your arm sounds like nerve pain. Nerve pain is a wrong signal telling the brain there is pain somewhere, but that area is not damaged and shouldn't be hurting. We have two Health Pages on these topics that you can read:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Paresthesias---Things-That-Go-BUZZ-in-the-Night/show/378?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
You eye pain and blurred vision again should spark concern in your doctor. Our vision is precious and not to be ignored when there are problems. You should see at least an ophthalmologist and preferably a neuro-ophthalmologist to be checked for optic neuritis, one of the most common symptoms in MS. One of the tests that should be done for this is an MRI of the brain with MS Protocol and focus on the optic nerves. Optic neuritis can occur alone, but should bring the need to rule-out MS to the doctor's mind. Be aware that the physical exam (where they look into the back of the eye) can be normal in over 60% of people whith confirmed optic neuritis. The diagnosis is then made using other tests than just the physical exam.
Okay, I'm sure you are getting the drift here. You have had multiple episodes of neurologic symptoms pointing to a very wide range of areas of the central nervous system. The diagnosis of MS - the most common kind, Relapsing Remitting MS - starts by requiring two or more attacks and damage to the nervous system in two or more areas. You have that as a "slam dunk." Basketball slang for easy answer.
It also requires that you be given a thorough, head-to-toe neurologic exam to see if there is visible evidence of damage. This usually requires a referral to a neurologist.
The third most important part to the diagnosis is that you need a thorough look for all the more reasonable "other" answers to why you have these symptoms, like autoimmune diseases, infections, deficiencies, thyroid problems, and others. This must be done before ANYONE can get an MS diagnosis.
The MRIs of your brain and full spinal cord should have been done long ago, and if they didn't show lesions should have been repeated and repeated.
If all the stuff above didn't give an answer then you need a spinal tap to look for MS evidence there.
It sounds to me like each symptom you have had was looked at - or not - as a separate problem and that no doctor ever put all the pieces together. This has now become mandatory.
If you have a good relationship with your doctor then you might have him/her read this whole thread, including your posts which put all of the problems through the years in one place.
Right now you need a referral to a Neurology Consultant, preferably one very skilled in MS. And you need MRIs of your brain, and full spinal cord on the most powerful MRI machine in your region. You also need an ophthalmologic eval NOW!
I hope this helps. Keeps asking questions. I see that you are in Ireland, and I fear you might be the victim of health care rationing, but you need to be proactive, get the concern of your GP behind you and move on this.
Welcome again,
Quix, MD
It is inconceivable to me that you have gone twenty years with these complaints and have not been sent to a neurologist nor had any MRIs. Your symptoms scream for this to be done. Since they started in your early twenties, I can only imagine that your doctors dismissed them as a "woman's emotional stress or imaginings".
While no one here can diagnose MS I can certainly talk about your problems in the context of MS.
Your first and worst symptom is the weakness and exhaustion in your arms. This can be seen with MS, but generally the legs develop more problems first. This is NOT a rule. MS will follow NO rules religiously. How long do these episodes of weakness and neck pain last? For this symptom alone you should have received an MRI of the cervical spine. I'm surious, are the tendon reflexes in your arms normal? Or are they absent or hyperactive?
The vertigo is a very common symptom in MS. However, it is also one of the most common symptoms that all primary care physicians, ENT specialists and neurologists see. When the episodes became recurrent it should have prompted an evaluation by either an ENT specialist or a neurologist.
The Trigeminal Neuralgia is also very common in MS. However, it is relatively uncommon under the age of 50 in the normal population. It's appearance in a woman in her 30's should have brought up the concern regarding MS, and should have sparked the desire for an MRI of the brainstem (which is done at the same time as one for the brain). Tegretol is the firstline drug recommended for it. You say it helped. That's good. Have you needed to keep taking it or were you able to stop it eventually?
The next flurry of symptoms is looking more and more like a central nervous system demyelinating disease - of which MS is by far the most common - especially in your ethnicity, which I presume is Irish. One of the risk factors for MS is young adults of Northern European heritage.
The mind fog and poor memory is common to many of the autoimmune disorders, MS, Firbromyalgia, ME - plus anemia and thyroid problems. You have had some of the work up for these.
The sudden arm and leg jerking sounds like either Myoclonus or Hemi-Ballism. Both of these are movement disorders. Movement disorders of all types are common in MS. For more info on these you can look at my favorite site for discussion of all the major movement disorders:
wemove.org
Hmmm, we are seeing a pattern here. Apparently your doctors are not. :((
The pain and odd sensations felt here and there, like the sensation of cold water being splashed on your hip are classic paresthesias. These are "wrong" signals being sent from sensory nerves. The pain under your arm sounds like nerve pain. Nerve pain is a wrong signal telling the brain there is pain somewhere, but that area is not damaged and shouldn't be hurting. We have two Health Pages on these topics that you can read:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Paresthesias---Things-That-Go-BUZZ-in-the-Night/show/378?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
You eye pain and blurred vision again should spark concern in your doctor. Our vision is precious and not to be ignored when there are problems. You should see at least an ophthalmologist and preferably a neuro-ophthalmologist to be checked for optic neuritis, one of the most common symptoms in MS. One of the tests that should be done for this is an MRI of the brain with MS Protocol and focus on the optic nerves. Optic neuritis can occur alone, but should bring the need to rule-out MS to the doctor's mind. Be aware that the physical exam (where they look into the back of the eye) can be normal in over 60% of people whith confirmed optic neuritis. The diagnosis is then made using other tests than just the physical exam.
Okay, I'm sure you are getting the drift here. You have had multiple episodes of neurologic symptoms pointing to a very wide range of areas of the central nervous system. The diagnosis of MS - the most common kind, Relapsing Remitting MS - starts by requiring two or more attacks and damage to the nervous system in two or more areas. You have that as a "slam dunk." Basketball slang for easy answer.
It also requires that you be given a thorough, head-to-toe neurologic exam to see if there is visible evidence of damage. This usually requires a referral to a neurologist.
The third most important part to the diagnosis is that you need a thorough look for all the more reasonable "other" answers to why you have these symptoms, like autoimmune diseases, infections, deficiencies, thyroid problems, and others. This must be done before ANYONE can get an MS diagnosis.
The MRIs of your brain and full spinal cord should have been done long ago, and if they didn't show lesions should have been repeated and repeated.
If all the stuff above didn't give an answer then you need a spinal tap to look for MS evidence there.
It sounds to me like each symptom you have had was looked at - or not - as a separate problem and that no doctor ever put all the pieces together. This has now become mandatory.
If you have a good relationship with your doctor then you might have him/her read this whole thread, including your posts which put all of the problems through the years in one place.
Right now you need a referral to a Neurology Consultant, preferably one very skilled in MS. And you need MRIs of your brain, and full spinal cord on the most powerful MRI machine in your region. You also need an ophthalmologic eval NOW!
I hope this helps. Keeps asking questions. I see that you are in Ireland, and I fear you might be the victim of health care rationing, but you need to be proactive, get the concern of your GP behind you and move on this.
Welcome again,
Quix, MD
I agree that you need more testing done. Your symptoms could be MS but they could also be a host of other Autoimmune disorders. As for the jerking and twitching you described, I also have this problem and I take Baclofen for it. You should ask your doctor about it. It does a very good job keeping mine under control. I wish you the best and keep us informed as to what is going on.
I'll be praying,
Carol
I'll be praying,
Carol
Thankyou for taking the time to reply to me and Im sorry for the delay in getting back to thank you all who replied. Im trying to work my way round the site as Im not used to the forum thingy just yet :-)
( I actually didn't know I could reply in this box) I did have some blood work done a month ago and it all came back ok , hormone levels , thyroid, & to be honest I don't even know what else was tested for.
I have spent most of the last week in bed with exhaustion & weakness in my arm's & legs plus the eye thing is still going on stabbing pains & general discomfort in my eye. vision is not improved either. . I have been amazed reading some of the post's on here to do with heat adversely affecting symptoms & so much more, I feel like Iv come home for want of a better word.
I'v cried reading some of the post's on here it feel's like I could have written them myself some are so accurate to my symptoms and how Doctors have treated people so poorly when all anyone want's is to be taken seriously .
Im going to ask my Dr tomorrow to refer me for an MRI , my daughter's partner said yesterday he couldn't look at me seriously anymore as my speech is slurred & he didn't know how to be around me. I wasn't even aware I was slurring my speech.
Again thankyou Mary, LATW &summerluvr,
( I actually didn't know I could reply in this box) I did have some blood work done a month ago and it all came back ok , hormone levels , thyroid, & to be honest I don't even know what else was tested for.
I have spent most of the last week in bed with exhaustion & weakness in my arm's & legs plus the eye thing is still going on stabbing pains & general discomfort in my eye. vision is not improved either. . I have been amazed reading some of the post's on here to do with heat adversely affecting symptoms & so much more, I feel like Iv come home for want of a better word.
I'v cried reading some of the post's on here it feel's like I could have written them myself some are so accurate to my symptoms and how Doctors have treated people so poorly when all anyone want's is to be taken seriously .
Im going to ask my Dr tomorrow to refer me for an MRI , my daughter's partner said yesterday he couldn't look at me seriously anymore as my speech is slurred & he didn't know how to be around me. I wasn't even aware I was slurring my speech.
Again thankyou Mary, LATW &summerluvr,
I agre you need to keep pushing your doctor for answers. Testing not just pushing drugs for symptoms. You need an MRI.
Sounds like you need to get some testing done! I agree with Mary. Call your PCP and start looking for answers.
LA
LA
Many of us here have had a host of strange symptoms for years without a firm diagnosis. We understand your desperate longing for an explanation and relief.
Have you had any testing done (MRI, nerve conduction, blood work, etc) by your family physician or a neurologist? Many of your symptoms can be caused by MS. They could also be caused by another disease or combination of problems.
I'd be looking for a referral from your primary doctor. In the meantime, try to pull together a timeline of the problems you have had, when they occured, and any possible triggers. There is help for doing this in the Health Pages. You can get there by clicking on the yellow icon at the top left of the page.
Let us know as you start to unravel your Mystery.
Mary
Have you had any testing done (MRI, nerve conduction, blood work, etc) by your family physician or a neurologist? Many of your symptoms can be caused by MS. They could also be caused by another disease or combination of problems.
I'd be looking for a referral from your primary doctor. In the meantime, try to pull together a timeline of the problems you have had, when they occured, and any possible triggers. There is help for doing this in the Health Pages. You can get there by clicking on the yellow icon at the top left of the page.
Let us know as you start to unravel your Mystery.
Mary
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