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Possible MS??
Hello everyone. I have been in possible MS hell with testings the last month. I am a 45 year old female with a autoimmune history. I have rheumatoid arthritis and Sjogren’s. About 2 months ago I started slurring my words at the end of my shift, I ignored it cause I thought I was just fatigued. Then I started having difficulty urinating (like the hose was kinked), takes me forever to go. No Urine infection, I checked. Then I started tripping over my feet. I even fell walking up the stairs at work and splatted on the floor in front of everyone!!! Then the electric shocks started, first my knees for about a minute at a time a few times a day. Then my arm neck to shoulder. Hurt so bad I was sweating and nauseous. That pain has gotten a bit better and more burning and cramping then electric since then, but pain still present. I have great muscle fatigue, cramping spasms, intermittent facial and body numbness, and slowed thinking. I haven’t been able to work (I have a very mentally demanding job) and am scared to drive cause things change from one minute to the next. I even have had the shocks go down my spine x3.
I have had 4 CT, 3 MRI, multiple labs draws, and a LP. It seems my MRI’s negative except extensive arthritis in my neck and spine without cord compression. There was “multiple small nonspecific T2 weighted highlighted areas on both sides of brain but they thought this was caused by hypertension. LP showed 11 o bands with only one in serum. Negative infections, cancers, lymes, TB, Syphillus, and HIV (thank god wasn’t worried but still) lol. So if I don’t have MS what the heck?? Has anyone else had like symptoms and negative MRI? How long did it take for them to turn positive? Could those nonspecific spots be MS. Is there anyone else here with both MS and RA. I’m terrified. I don’t think I can work like this but not sure how to surve without work? Will the symptoms calm down??
Sorry for the barrage of questions but I don’t know where else to seek answers.
Christina
I have had 4 CT, 3 MRI, multiple labs draws, and a LP. It seems my MRI’s negative except extensive arthritis in my neck and spine without cord compression. There was “multiple small nonspecific T2 weighted highlighted areas on both sides of brain but they thought this was caused by hypertension. LP showed 11 o bands with only one in serum. Negative infections, cancers, lymes, TB, Syphillus, and HIV (thank god wasn’t worried but still) lol. So if I don’t have MS what the heck?? Has anyone else had like symptoms and negative MRI? How long did it take for them to turn positive? Could those nonspecific spots be MS. Is there anyone else here with both MS and RA. I’m terrified. I don’t think I can work like this but not sure how to surve without work? Will the symptoms calm down??
Sorry for the barrage of questions but I don’t know where else to seek answers.
Christina
COMMUNITY LEADER
Hi Christina,
*IF* what has been happening to you is because of MS relapses, physio will probably have to wait until it's remitted......unfortunately with you now being dx with ON and having periventricular lesions (1 out of the 3 MS specific diagnostic criteria brain locations, the 4th is the spinal cord) neurological conditions like MS are a lot higher on your potential causes list, the dx of ON puts a big question mark over the interpretation of the subcortical and periventricular lesions being related to common small vascular lesions and caused by hypertension....
"The three brain areas in the McDonald criteria are juxtacortical, periventricular and infratentorial. Juxtacortical means next to / into the cortex, i.e. a lesion that lies right at the border of the gray and white matter close to the outer edge of the cerebrum.
Periventricular means next to the ventricles. Lesions next to the lateral ventricles are very common in MS. They often form at right angles to the ventricles which, when looked at side on, look a bit like fingers poking up over a wall. These are called Dawson’s fingers and are a classic sign of MS. Infratentorial means the brain stem and cerebellum; the areas under the cerebrum."
http://multiple-sclerosis-research.blogspot.com/2015/01/education-whats-mri.html
"I have periods of mental/ physical “heaviness”. I can’t really explain better than that. Like everything slows down, my thinking seems to slow, my body gets heavy. Can last 5 minutes to a few hours." when this type of situation is to do with MS, because it is only short lived it could be what's called a pseudo relapse, which is not a true relapse but the temporary return or worsening of their symptoms which resolves with sufficient rest and or cooling down.
This type of thing happens to people with MS (pwMS) when they over heat from either external and or internal temperatures rising, heat sensitivity or heat intolerance which is also called Uhtoff's phenomenon is a recognised symptom of MS. Many pwMS experience a temporary worsening of symptoms when they have an increase in their core body temperature, even by as little as 0.5 Degrees Celsius can be a problem and why air conditioners, cooling vests etc are often an MSers best friend...
The amount of physically activity your doing may be too much for you to, Lupus has a great fatigue explanation about spoons that works well to explain MS fatigue as well, it's called spoon theory, and it very easily explains how we can run out of energy and crash.....when it happens to me i think of it as toasting my self, lol i'm sure that will explain nothing hmmm what i mean is when i've been too physically active i've over cooked my energy toast so i'm 'burnt toast' and i can't do anything else, i can't cook my energy toast anymore it's done and dusted...
Often neurologist have their own way of doing things, a specific set of clinical tests they do and specific questions they ask and in a specific order for the first time they see a patient, a lot won't deviate from what they always do even when they're seeing a new patient with a pre-existing MS dx....often it genuinely doesn't matter if you prepare a list of your symptoms, diagnosis's, history and have a some questions you'd like answered, the neuro has his/her schedule to get through to get an idea on IF a neurological condition like MS is a likely causation or not and what tests you need etc. So the advice i'd recommend is that you take someone in to the appointment with you, there are often things going on that you are not aware of but are being picked up by partners, close friends, parents etc and the other thing is to try to keep open minded, you've got a lot of medical issues going on that complicates things so it might still take some time to work it all out.
I hope that helps.......JJ
*IF* what has been happening to you is because of MS relapses, physio will probably have to wait until it's remitted......unfortunately with you now being dx with ON and having periventricular lesions (1 out of the 3 MS specific diagnostic criteria brain locations, the 4th is the spinal cord) neurological conditions like MS are a lot higher on your potential causes list, the dx of ON puts a big question mark over the interpretation of the subcortical and periventricular lesions being related to common small vascular lesions and caused by hypertension....
"The three brain areas in the McDonald criteria are juxtacortical, periventricular and infratentorial. Juxtacortical means next to / into the cortex, i.e. a lesion that lies right at the border of the gray and white matter close to the outer edge of the cerebrum.
Periventricular means next to the ventricles. Lesions next to the lateral ventricles are very common in MS. They often form at right angles to the ventricles which, when looked at side on, look a bit like fingers poking up over a wall. These are called Dawson’s fingers and are a classic sign of MS. Infratentorial means the brain stem and cerebellum; the areas under the cerebrum."
http://multiple-sclerosis-research.blogspot.com/2015/01/education-whats-mri.html
"I have periods of mental/ physical “heaviness”. I can’t really explain better than that. Like everything slows down, my thinking seems to slow, my body gets heavy. Can last 5 minutes to a few hours." when this type of situation is to do with MS, because it is only short lived it could be what's called a pseudo relapse, which is not a true relapse but the temporary return or worsening of their symptoms which resolves with sufficient rest and or cooling down.
This type of thing happens to people with MS (pwMS) when they over heat from either external and or internal temperatures rising, heat sensitivity or heat intolerance which is also called Uhtoff's phenomenon is a recognised symptom of MS. Many pwMS experience a temporary worsening of symptoms when they have an increase in their core body temperature, even by as little as 0.5 Degrees Celsius can be a problem and why air conditioners, cooling vests etc are often an MSers best friend...
The amount of physically activity your doing may be too much for you to, Lupus has a great fatigue explanation about spoons that works well to explain MS fatigue as well, it's called spoon theory, and it very easily explains how we can run out of energy and crash.....when it happens to me i think of it as toasting my self, lol i'm sure that will explain nothing hmmm what i mean is when i've been too physically active i've over cooked my energy toast so i'm 'burnt toast' and i can't do anything else, i can't cook my energy toast anymore it's done and dusted...
Often neurologist have their own way of doing things, a specific set of clinical tests they do and specific questions they ask and in a specific order for the first time they see a patient, a lot won't deviate from what they always do even when they're seeing a new patient with a pre-existing MS dx....often it genuinely doesn't matter if you prepare a list of your symptoms, diagnosis's, history and have a some questions you'd like answered, the neuro has his/her schedule to get through to get an idea on IF a neurological condition like MS is a likely causation or not and what tests you need etc. So the advice i'd recommend is that you take someone in to the appointment with you, there are often things going on that you are not aware of but are being picked up by partners, close friends, parents etc and the other thing is to try to keep open minded, you've got a lot of medical issues going on that complicates things so it might still take some time to work it all out.
I hope that helps.......JJ
Hello again,
Just a quick update... all my testing for everything other than MS returned negative. I have also now been diagnosed with optic neuritis. My symptoms are improving but still pretty aweful. I have been scheduled to see the MS specialist at Mayo for possible treatment diagnosis.
I just wanted to ask if there are any specific questions, tips, or other things I should bring up to the MS specialist that you all have found helpful when I meet with him/her?
I also am going to start rehab... any helpful tips for this??
I have periods of mental/ physical “heaviness”. I can’t really explain better than that. Like everything slows down, my thinking seems to slow, my body gets heavy. Can last 5 minutes to a few hours. Has anyone else experienced this? If so does anyone have any thoughts on coping or dealing with it??
Thanks for your insite. This site has been very helpful.
Christina
Just a quick update... all my testing for everything other than MS returned negative. I have also now been diagnosed with optic neuritis. My symptoms are improving but still pretty aweful. I have been scheduled to see the MS specialist at Mayo for possible treatment diagnosis.
I just wanted to ask if there are any specific questions, tips, or other things I should bring up to the MS specialist that you all have found helpful when I meet with him/her?
I also am going to start rehab... any helpful tips for this??
I have periods of mental/ physical “heaviness”. I can’t really explain better than that. Like everything slows down, my thinking seems to slow, my body gets heavy. Can last 5 minutes to a few hours. Has anyone else experienced this? If so does anyone have any thoughts on coping or dealing with it??
Thanks for your insite. This site has been very helpful.
Christina
Have a Dr check for MBP (Myelin Basic Protein) in your spinal fluid. If elevated, it is an indicator your body is TRYing to repair MS nerve damage. It was new when I went thru MS testing/workup. In my case I did not need it for my RRMS Dx. I have enough classic Dawson's Fingers (MS lesions) to Dx 5 or 6+ MS cases.ha ha. plus other tests, such as EVP etc.
2 Comments
Ok thank you. I searched through my results and didn’t see that so I’ll have them add it. I think the neuro doc was sure it was either lymes or vasculitis but both are negative in my serum and CSF. I think the EVP will be th
The next step. Sorry for the error m. The other message was sent before I finished. My hand eye coordination is messed up as well. Takes me forever to type.
Hi,
Both the Rhuemy and the neuro doc. do not think it related to the Sjögrens as all of the symptoms do not for. I still am waiting for 2 tests from the LP to return this week and then I go back to neuro for a review. Yesterday my vision in my right eye became blurry. Can’t read well now. I’ll update the post with his thoughts then as maybe it will help someone else in the future. Thanks for your thoughts!!
Both the Rhuemy and the neuro doc. do not think it related to the Sjögrens as all of the symptoms do not for. I still am waiting for 2 tests from the LP to return this week and then I go back to neuro for a review. Yesterday my vision in my right eye became blurry. Can’t read well now. I’ll update the post with his thoughts then as maybe it will help someone else in the future. Thanks for your thoughts!!
COMMUNITY LEADER
Hi and welcome,
Leukoaraiosis is also small vessel chronic ischaemia, microvascular ischaemia, ischaemic microangiopathy, age-related white matter changes and unidentified bright objects.....because your 45 your likely way under for it to be classed as normal 65+ age related white matter changes 'but' bilateral subcortical and periventricular are the most common locations for tiny micro vascular lesions 1-3mm in size to show up on an MRI, Hypertension is one of the common causes so what was found on your brain MRI is likely to be consistent with your medical history....
Sjogren’s is one of the conditions that can also cause obands, both RA and Sjogren's can also cause some similar-same symptoms as MS, MS mimics though do not have the same causation, because MS is a disease of the central nervous system the majority of symptoms associated with MS are also associated with many other medical conditions too eg "banding around abdomen and a tightening in ribs" when related to MS it's caused by spinal cord lesions but it's also related to other conditions eg Gallbladder disease, Stomach or intestinal, infection, Lung disease, Hypertension, Inflammation of the cartilage between the ribs (called costochondritis), Panic attack, Structural spinal issues etc etc
We do have an inactive community member who had a life long history of being dx with juvenile RA and in her mid-late forties she was additional dx with MS but whilst her brain MRI was only slightly suggestive with neurological conditions like MS, she additionally was found to have spinal cord lesions that showed up on her spinal MRI's so her MS dx was based on all her suggestive-consistent diagnostic evidence that was inconsistent with her known medical history.....you may be interested to know that some RA medication is now used as an MS disease modifying drug as well eg rituximab, and i don't recall her DMD treatment plan altered with the her dx of MS.
Sjogren's Syndrome can actually be one of the closest mimics to MS, just a thought but did anyone consider the potential of neuroSjogren's sorry i can't help with specific information about what diagnostic evidence would be required but it's something you might consider asking your treating physician about.
I hope that helps.......JJ
Leukoaraiosis is also small vessel chronic ischaemia, microvascular ischaemia, ischaemic microangiopathy, age-related white matter changes and unidentified bright objects.....because your 45 your likely way under for it to be classed as normal 65+ age related white matter changes 'but' bilateral subcortical and periventricular are the most common locations for tiny micro vascular lesions 1-3mm in size to show up on an MRI, Hypertension is one of the common causes so what was found on your brain MRI is likely to be consistent with your medical history....
Sjogren’s is one of the conditions that can also cause obands, both RA and Sjogren's can also cause some similar-same symptoms as MS, MS mimics though do not have the same causation, because MS is a disease of the central nervous system the majority of symptoms associated with MS are also associated with many other medical conditions too eg "banding around abdomen and a tightening in ribs" when related to MS it's caused by spinal cord lesions but it's also related to other conditions eg Gallbladder disease, Stomach or intestinal, infection, Lung disease, Hypertension, Inflammation of the cartilage between the ribs (called costochondritis), Panic attack, Structural spinal issues etc etc
We do have an inactive community member who had a life long history of being dx with juvenile RA and in her mid-late forties she was additional dx with MS but whilst her brain MRI was only slightly suggestive with neurological conditions like MS, she additionally was found to have spinal cord lesions that showed up on her spinal MRI's so her MS dx was based on all her suggestive-consistent diagnostic evidence that was inconsistent with her known medical history.....you may be interested to know that some RA medication is now used as an MS disease modifying drug as well eg rituximab, and i don't recall her DMD treatment plan altered with the her dx of MS.
Sjogren's Syndrome can actually be one of the closest mimics to MS, just a thought but did anyone consider the potential of neuroSjogren's sorry i can't help with specific information about what diagnostic evidence would be required but it's something you might consider asking your treating physician about.
I hope that helps.......JJ
I just wanted to add, I also tested negative to lupus, and vasculitis. The MRI showed multiple lesions in periventricular both hemispheres and subcortical both hemispheres. Said maybe leukoariosis cause HTN.
Symptoms I also have are banding around abdomen and a tightening in ribs left side (EKG completed not cardiac related). Right sided pain constant x 2 weeks now. Wakes me up. Weakness in arm and hand. I have had RA for 5 years on daily prednisone and Humaria weekly injections, as well as leufinamide daily. My RA has been stable no flairs have ever caused muscle, nerve, weakness or numbness.
Thanks again for any input or thoughts.
Symptoms I also have are banding around abdomen and a tightening in ribs left side (EKG completed not cardiac related). Right sided pain constant x 2 weeks now. Wakes me up. Weakness in arm and hand. I have had RA for 5 years on daily prednisone and Humaria weekly injections, as well as leufinamide daily. My RA has been stable no flairs have ever caused muscle, nerve, weakness or numbness.
Thanks again for any input or thoughts.
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