Aa
possible Multiple Sclerosis?
G'day, . I am in limbo at the moment, waiting to find out what the outcome will be, firstly let me start with a bit of medical background.
Initially dx with graves disease, had the radioactive iodine treatment, then went to hypothyroid instead of hyper, which brought on similar symptoms (so I am told) of MS, ended up in Hospital even, these were my symptoms according to Hospital report. (mind you I was told to get to the Hospital asap as my GP suspected a stroke at the time): 3 week history of generalised malaise, lethargy, and bifrontal headache associated with 2-3 week history of left facial droop, right arm weakness and clumsiness and dysarthria. Found to be hypothyroid following a recent radioiodine ablation therapy.
At the hospital they began to treat my hypothyroid with thyroxine (spell check) high dose and alot of the symptoms have subsided a little, note, a very little.
At the hospital I was given a CT scan, a MRI scan and a spinal tap with the following results:
Best appreciated on the FLAIR sequence, there is periventricular high signal seen together with scattered foci of high signal within the deep white matter seen in a pericallosal distribution. This is more pronounced than what would be expected for a patient of stated age of 43 yrs
conclusion:
Best appreciated on the sagittal FLAIR, there are multiple T2 hyperintensities seen at the collosal septal interface with a perpendicular orientation. These do not demonstrate significant enhancement. the main differential for this would be that of demyelination. Progress imaging is recommended.
MRI suggestive of idiopathic demyelination but no active lesions, further invstigation once hypothyroidism resolved.
LP (spinal tap) demonstrated elevated protein but normal glucose, no xanthochromia, oligo clonal bands pending.
I have just recently gone for a CT scan on the "Circle of Willis" and yet to gain results as I am waiting for my neurologist to book another appointment (have rung her but still no call)
Since last seeing my neurologist I have experienced other things, for example, my hips in hospital were very sore, and my lower back, this subsided a little but now on my left side around my butt and hip area sometimes down the back of my legs and knees it is very sore, causing me to limp. I have also experienced tingling buzz in my left toes, and just yesterday this buzz started in my right foot and went up to half way up the shin on my left leg. I am experiencing burning in the palms of my hands and under the arch of my feet.
so I guess my question is Does this sound like M.S? I know my neuro is trying to rule out a whole lot of other things, and I am not too shocked if it IS M.S as I am the type of person who is like, well ok if that's it, lets move on and get on with it (treatment etc)
I guess I'm just looking for opinions.
sorry this is long
be well.
Lee (f 43yrs)
Initially dx with graves disease, had the radioactive iodine treatment, then went to hypothyroid instead of hyper, which brought on similar symptoms (so I am told) of MS, ended up in Hospital even, these were my symptoms according to Hospital report. (mind you I was told to get to the Hospital asap as my GP suspected a stroke at the time): 3 week history of generalised malaise, lethargy, and bifrontal headache associated with 2-3 week history of left facial droop, right arm weakness and clumsiness and dysarthria. Found to be hypothyroid following a recent radioiodine ablation therapy.
At the hospital they began to treat my hypothyroid with thyroxine (spell check) high dose and alot of the symptoms have subsided a little, note, a very little.
At the hospital I was given a CT scan, a MRI scan and a spinal tap with the following results:
Best appreciated on the FLAIR sequence, there is periventricular high signal seen together with scattered foci of high signal within the deep white matter seen in a pericallosal distribution. This is more pronounced than what would be expected for a patient of stated age of 43 yrs
conclusion:
Best appreciated on the sagittal FLAIR, there are multiple T2 hyperintensities seen at the collosal septal interface with a perpendicular orientation. These do not demonstrate significant enhancement. the main differential for this would be that of demyelination. Progress imaging is recommended.
MRI suggestive of idiopathic demyelination but no active lesions, further invstigation once hypothyroidism resolved.
LP (spinal tap) demonstrated elevated protein but normal glucose, no xanthochromia, oligo clonal bands pending.
I have just recently gone for a CT scan on the "Circle of Willis" and yet to gain results as I am waiting for my neurologist to book another appointment (have rung her but still no call)
Since last seeing my neurologist I have experienced other things, for example, my hips in hospital were very sore, and my lower back, this subsided a little but now on my left side around my butt and hip area sometimes down the back of my legs and knees it is very sore, causing me to limp. I have also experienced tingling buzz in my left toes, and just yesterday this buzz started in my right foot and went up to half way up the shin on my left leg. I am experiencing burning in the palms of my hands and under the arch of my feet.
so I guess my question is Does this sound like M.S? I know my neuro is trying to rule out a whole lot of other things, and I am not too shocked if it IS M.S as I am the type of person who is like, well ok if that's it, lets move on and get on with it (treatment etc)
I guess I'm just looking for opinions.
sorry this is long
be well.
Lee (f 43yrs)
G'Day ess
yes, I had a big problem with my thyroid, initially I was hyper graves disease and was on neomercazole for years to bring it down but it got to the stage that when they weened me off it to see if the thyroid stabilized I would go way up again (very high levels)
Sooo.. they gave me the radioactive iodine tablet and eventually after a couple of months it got very low very quickly (was told to not go to the doctor unless I experienced my hyperthyroid symptoms ie panic attack which I only ever had one many years before never again after that one. They never told me what I would experience with a hypothyroid) I was booked into see my endo 12 weeks after the initial radioactive iodine treatment and sent on my merry way. Wasn't even told to get blood tests.
Ended up (as my endo put it) I had a severe reaction. But that is not what initially put me in hospital (although it played a part) I had a speech slurr and partial drooping of my face, weakness in limbs (couldn't raise my arms for more than 5 seconds without pain and my GP sent me straight to the hospital with a suspected stroke.
They told me "oh gee your heart rate is low" and I said no, I'm hyperthyroid, it should be quicker than normal fluttery like, but it was still low they insisted.. turns out I went from hyper to hypo in the extreme, and my endo who came to see me at the hospital said I was lucky I didn't go into a coma, and he had never seen such an extreme case since he was at med school.
Now I am on thyroxine (spell check) and have been for approx 5 and a half weeks and the symptoms (arm weakness etc) have subsided a little, though I am still experiencing pain just typing this out.
My neuro, did not think the facial weakness had anything to do with my thyroid so took MRI on brain and spine, CT scans, Spinal tap etc, found lesions (numerous) in my brain, and immediatly suspected (and told me she is leaning toward) MS.
Now I am in a waiting game.
My Thyroid levels are returning to normal but all these other symptoms, buzzing, pins n needles, slight numbness on left side of my face etc etc (am I going crazy) are still there and seem to find more and more things happening (that still make me think am I imagining this)
My neuro wants to see me once the thyroid levels get sorted (which pretty much they have) so now I am just waiting for her to ring through an appointment.
can't say I am not frustrated though, I haveto go back to work, will only do like 3 hrs a day over the easter break because my job involves typing and that is really hard to do at the moment, luckilly my job is very supportive of the time off I have had (used up all my sick leave and annual leave) and will accommodate anything I need to get back to work again, but it would be easier to have some answers, know if I need more tests etc before I go back to work so I can also inform them as to what accommodations I will exactly need from work to work with these. sigh.
Thanks for the reply, I figured one autoimmune problem could exist with another, am not sure if I have hashimoto's was only told I was once hyper now I am hypo =)
Lee
yes, I had a big problem with my thyroid, initially I was hyper graves disease and was on neomercazole for years to bring it down but it got to the stage that when they weened me off it to see if the thyroid stabilized I would go way up again (very high levels)
Sooo.. they gave me the radioactive iodine tablet and eventually after a couple of months it got very low very quickly (was told to not go to the doctor unless I experienced my hyperthyroid symptoms ie panic attack which I only ever had one many years before never again after that one. They never told me what I would experience with a hypothyroid) I was booked into see my endo 12 weeks after the initial radioactive iodine treatment and sent on my merry way. Wasn't even told to get blood tests.
Ended up (as my endo put it) I had a severe reaction. But that is not what initially put me in hospital (although it played a part) I had a speech slurr and partial drooping of my face, weakness in limbs (couldn't raise my arms for more than 5 seconds without pain and my GP sent me straight to the hospital with a suspected stroke.
They told me "oh gee your heart rate is low" and I said no, I'm hyperthyroid, it should be quicker than normal fluttery like, but it was still low they insisted.. turns out I went from hyper to hypo in the extreme, and my endo who came to see me at the hospital said I was lucky I didn't go into a coma, and he had never seen such an extreme case since he was at med school.
Now I am on thyroxine (spell check) and have been for approx 5 and a half weeks and the symptoms (arm weakness etc) have subsided a little, though I am still experiencing pain just typing this out.
My neuro, did not think the facial weakness had anything to do with my thyroid so took MRI on brain and spine, CT scans, Spinal tap etc, found lesions (numerous) in my brain, and immediatly suspected (and told me she is leaning toward) MS.
Now I am in a waiting game.
My Thyroid levels are returning to normal but all these other symptoms, buzzing, pins n needles, slight numbness on left side of my face etc etc (am I going crazy) are still there and seem to find more and more things happening (that still make me think am I imagining this)
My neuro wants to see me once the thyroid levels get sorted (which pretty much they have) so now I am just waiting for her to ring through an appointment.
can't say I am not frustrated though, I haveto go back to work, will only do like 3 hrs a day over the easter break because my job involves typing and that is really hard to do at the moment, luckilly my job is very supportive of the time off I have had (used up all my sick leave and annual leave) and will accommodate anything I need to get back to work again, but it would be easier to have some answers, know if I need more tests etc before I go back to work so I can also inform them as to what accommodations I will exactly need from work to work with these. sigh.
Thanks for the reply, I figured one autoimmune problem could exist with another, am not sure if I have hashimoto's was only told I was once hyper now I am hypo =)
Lee
Hi there, Aussie Lee. American ess here.
I don't know a thing about your blood test results, and have to admit I've never heard of the circle of willis or any mention of this in relation to MS. But I do know a bit or more about MS, also hypothyroidism. I'm assuming you have the Hashimoto's kind of thyroid problem, which accounts for the great majority of hypothyroid diagnoses. That is an autoimmune disease, I think the most common one, and tends to run in families.
It sure runs in my family, both hypo and hyper, as do other autoimmune diseases. I am hypo myself. To answer one of your questions, yes it is possible to be both hypothyroid and an MSer. In fact, if you have one autoimmune disease, you are more likely than average to have another. I'm working on my third right now.
If you are on a thyroid replacement med, it will take about 6 weeks for its actual results to be measured, so be patient. The med may have to be adjusted more than once to get the right levels. However, if your symptoms are actually caused by thyroid issues, which I doubt, they should abate noticeably within a few weeks.
What you describe about the buzzing starting at your head does sound like l'Hermittes. Try Googling this to see if it fits.
Good luck in the diagnostic process, and visit here often.
ess
I don't know a thing about your blood test results, and have to admit I've never heard of the circle of willis or any mention of this in relation to MS. But I do know a bit or more about MS, also hypothyroidism. I'm assuming you have the Hashimoto's kind of thyroid problem, which accounts for the great majority of hypothyroid diagnoses. That is an autoimmune disease, I think the most common one, and tends to run in families.
It sure runs in my family, both hypo and hyper, as do other autoimmune diseases. I am hypo myself. To answer one of your questions, yes it is possible to be both hypothyroid and an MSer. In fact, if you have one autoimmune disease, you are more likely than average to have another. I'm working on my third right now.
If you are on a thyroid replacement med, it will take about 6 weeks for its actual results to be measured, so be patient. The med may have to be adjusted more than once to get the right levels. However, if your symptoms are actually caused by thyroid issues, which I doubt, they should abate noticeably within a few weeks.
What you describe about the buzzing starting at your head does sound like l'Hermittes. Try Googling this to see if it fits.
Good luck in the diagnostic process, and visit here often.
ess
My blood test results, if anyone can make sense of them
Albumin was high, 49.0 g/L (36.0-48.0)
Alpha 1 Globulin 2.0 g/L (2.0-4.0)
Alpha 2 Globulin 6.0 g/L (5.0-10.0)
Beta -1 Globulin 5.0 g/L (3.0-6.0)
Beta -2 Globulin 3.0 g/L (1.0-5.0) and
Gamma Globulin 12.0 g/L (6.0-13.0)
There was a trace of an Igg Kappa paraprotein detected in the gamma region.
There was no evidence of paresis (a reduction in the level of normal immunoglobulins in the gamma region)
Immunoelectrophoresis
IEPG -Abnormal
This band was visible only by IFE
Recommend urine IFE to exclude the presence of monocolonal free light chain
Angiotensin converting enzyme ACE 26 U/L (8-52)
Antinuclear antibody ANA - Negative (an ANA excludes Lupis in 95% of cases)
ENA - Negative
Anti-dsDNA - 1.0 IU/mL ( <7.5)
Anti neutrophil cytoplasmic antibodies ANCA - negative
I do not know what all this means, tried to look up certain things on google but it did my head in so guess I just got to wait for the appointment with the neuro again.. Sigh.
Lee
Albumin was high, 49.0 g/L (36.0-48.0)
Alpha 1 Globulin 2.0 g/L (2.0-4.0)
Alpha 2 Globulin 6.0 g/L (5.0-10.0)
Beta -1 Globulin 5.0 g/L (3.0-6.0)
Beta -2 Globulin 3.0 g/L (1.0-5.0) and
Gamma Globulin 12.0 g/L (6.0-13.0)
There was a trace of an Igg Kappa paraprotein detected in the gamma region.
There was no evidence of paresis (a reduction in the level of normal immunoglobulins in the gamma region)
Immunoelectrophoresis
IEPG -Abnormal
This band was visible only by IFE
Recommend urine IFE to exclude the presence of monocolonal free light chain
Angiotensin converting enzyme ACE 26 U/L (8-52)
Antinuclear antibody ANA - Negative (an ANA excludes Lupis in 95% of cases)
ENA - Negative
Anti-dsDNA - 1.0 IU/mL ( <7.5)
Anti neutrophil cytoplasmic antibodies ANCA - negative
I do not know what all this means, tried to look up certain things on google but it did my head in so guess I just got to wait for the appointment with the neuro again.. Sigh.
Lee
ok just an update, went to get the angiogram MRI of my circle of willis the other week and my neuro called me (after I rung her office twice) to tell me that results were better than normal, (if that is even possible) so there is nothing wrong with that, but she is also pretty busy doing a conference and I will haveto wait a little for an appointment to see her for the results of blood work up, though I have those results also as I got them sent to my GP as well. Granted I don't understand them though, My GP is only really treating me for my hypothyroidism, so only explained that my levels have nearly gotten to normal.
Went to the endo also and he said the same thing.
Was wondering, can one have hypothyroidism AND MS at the same time?
Lee.
oh and consider best comment in future ignored :) hehe
Went to the endo also and he said the same thing.
Was wondering, can one have hypothyroidism AND MS at the same time?
Lee.
oh and consider best comment in future ignored :) hehe
COMMUNITY LEADER
The plot thickens Watson lol okay now i get it........you could be describing the L'Hermitte's sign, it's an electrical buzzing/shock sensations that travels down your limb(s) when you bend your neck forward to your chin.
L'Hermitte's is not exclusive to MS it's also connected to arthritis, cervical spondylosis, compression injury, degenerative disc's etc but when it is, it's a clinical sign of a spinal cord lesion. I think it's specific to the cervical spine, though i'm not 100% sure on that.
Cheers.........JJ
ps feel free to ignore the best answer, most of us do :D
L'Hermitte's is not exclusive to MS it's also connected to arthritis, cervical spondylosis, compression injury, degenerative disc's etc but when it is, it's a clinical sign of a spinal cord lesion. I think it's specific to the cervical spine, though i'm not 100% sure on that.
Cheers.........JJ
ps feel free to ignore the best answer, most of us do :D
I accidently clicked on best answer thingy oops, I dont think there is a best and not so best answer, everyone is helpful and I appreciate everyones imput/help *hugs*
Lol jj @ very necessary patient self.. actually I think I'm doing reasonably well with that..erm =)
I prolly explained the whole body thing a little wrong, its almost like when you hit your funny bone and it travels down your arm to your fingers, and buzzes for a second except this starts at the head and just goes down the back then tapers off down the leg, sometimes both legs. Kind of like a non painful electric shock. I havent had too many of them though, so not too worried bout it.
I do have vertigo, alot and my blood pressure is normal, no anemia. Sometimes the room spins for no reason, and sometimes it is just my eyes moving, but this comes and goes.
was really bad for about two weeks but has tapered off to mild occasional instances now.
Thanks for the welcome to the site.
Sorry I haven't listed all the things I've experienced, half the time I wonder if I'm just imagining things so fob things off.
Is the weekend now, so hopefully I'll get a call from my neuro next week and get some more news.
You guys are great here, and I appreciate the help, thanks =)
Be well
Lee
I prolly explained the whole body thing a little wrong, its almost like when you hit your funny bone and it travels down your arm to your fingers, and buzzes for a second except this starts at the head and just goes down the back then tapers off down the leg, sometimes both legs. Kind of like a non painful electric shock. I havent had too many of them though, so not too worried bout it.
I do have vertigo, alot and my blood pressure is normal, no anemia. Sometimes the room spins for no reason, and sometimes it is just my eyes moving, but this comes and goes.
was really bad for about two weeks but has tapered off to mild occasional instances now.
Thanks for the welcome to the site.
Sorry I haven't listed all the things I've experienced, half the time I wonder if I'm just imagining things so fob things off.
Is the weekend now, so hopefully I'll get a call from my neuro next week and get some more news.
You guys are great here, and I appreciate the help, thanks =)
Be well
Lee
COMMUNITY LEADER
hmmmmm not sure what's going on with the "full body tingles that go through from head to toe" because of how lesions cause the sx's in MS, MS cant actually cause any sx's to be all over the body or spread etc. I suppose it could possibly be related to the thyroid still but thats a complete guess, though its definitely not something MS can typically do.
MS isn't the only demyelinating disease, most common though for your age group and gender, though i think the report is basically saying you have lesions that do 'not' indicate active demyelination, so further testing is recommended. Honestly you probably would not get dx with MS in Aust yet, i'd expect you'll not know for sure until you have a second recorded attack and or some more test evidence eg Visual field tests, Obands in your LP, changes in your next MRI etc
White matter lesions are not unusual in people 65+ but generally the lesions are silent and not thought to cause the types of sx's you get in MS, so when your younger than that age group, and experiencing sx's, conditions like MS, Migraine, heart conditions, TIA's etc need to be considered and investigated. It can take a long time to work out exactly what's going on, so take a breath and dig deep to find that very necessary patient self :D
Ask any question that comes to mind and we'll do our collective best to provide you with the correct answers.
Cheers...........JJ
MS isn't the only demyelinating disease, most common though for your age group and gender, though i think the report is basically saying you have lesions that do 'not' indicate active demyelination, so further testing is recommended. Honestly you probably would not get dx with MS in Aust yet, i'd expect you'll not know for sure until you have a second recorded attack and or some more test evidence eg Visual field tests, Obands in your LP, changes in your next MRI etc
White matter lesions are not unusual in people 65+ but generally the lesions are silent and not thought to cause the types of sx's you get in MS, so when your younger than that age group, and experiencing sx's, conditions like MS, Migraine, heart conditions, TIA's etc need to be considered and investigated. It can take a long time to work out exactly what's going on, so take a breath and dig deep to find that very necessary patient self :D
Ask any question that comes to mind and we'll do our collective best to provide you with the correct answers.
Cheers...........JJ
p.s
one thing I was concerned about is the white spots the neurologist found on my brain, when she told me they were there my partner and I thought well ok I may have one or two, but when she showed us the spots and the size of them we were kind of shocked, she said normally if I were older she would not be too worried about this but because of my age (43) it seemed more than what she would expect. She said normally she would see that in people over the age or 50-60yrs and it was a concern for her, which now has become a concern for my partner and I also.
one thing I was concerned about is the white spots the neurologist found on my brain, when she told me they were there my partner and I thought well ok I may have one or two, but when she showed us the spots and the size of them we were kind of shocked, she said normally if I were older she would not be too worried about this but because of my age (43) it seemed more than what she would expect. She said normally she would see that in people over the age or 50-60yrs and it was a concern for her, which now has become a concern for my partner and I also.
G'Day JJ
thanks for the reply, and yes I figure aussie medical 'system' would be alot different to anywhere else, am currently seeing a neurologist who is part of St George Hospital in Sydney and comes highly recommended by my GP and also by my endocronologist, she did say if it looks like the dx is MS she will be moving me over to the MS neurologist a colleague of hers and it seemed at the last time I met with her that will be the case.
I prolly didn't make it clear that all this has happened in the last few weeks, so I do not know alot of the technical clinical signs etc my initial symptoms were3 week history of generalised malaise, lethargy, and bifrontal headache and 3 week history of left facial droop, right arm weakness, clumsiness and dysarthria. (getting this from my discharge referral note) My issues were left upper motor neuron facial droop and redused strenght in right arm, slurring dysarthria with uvula deviated to left, pathological reflexes in bilateral upper limbs with spread to fingers, normal neurological examination in lower limbs, CTB demonstrated no subacute stroke, MRI brain with gadolinium contrasted demonstrated multiple hyperintensities at the collosal spetal interface with perpendicular orientation without significant enhancement suggestive of demyelination. MRI spine demonstrated no demyelinating lesions (formal report pending)
Thought to have idiopathic demyelination which requires ongoing followup and further investigation.
Elevated CK on admission trending down prior to discharge
Left eye problem thought to be epimacular membrane with potential need for surgery in future
blurry vision in right eye
No known allergies
previous surgeries left rotator cuff repair.
so that's pretty much what started all this, the thing with my eye (left) I noticed a grey blurry spot in the center of my eye around the same time all the other symptoms started before I went to hospital. Have only been out of hospital like 4 weeks, and the pins n needles, pain in toes, limping and also full body tingles that go through from head to toe seemed to happen after I come out of hospital these seem to be new to me. even experienced a tingling down my left side of my face all around that went down across my jaw bone area.
I just read alot of the symptoms on here and alot of them seem very familiar but I don't really wish to jump the gun and say it is MS, I am just curious about it.
and yes you made sense =)
thanks again for your reply
Lee
thanks for the reply, and yes I figure aussie medical 'system' would be alot different to anywhere else, am currently seeing a neurologist who is part of St George Hospital in Sydney and comes highly recommended by my GP and also by my endocronologist, she did say if it looks like the dx is MS she will be moving me over to the MS neurologist a colleague of hers and it seemed at the last time I met with her that will be the case.
I prolly didn't make it clear that all this has happened in the last few weeks, so I do not know alot of the technical clinical signs etc my initial symptoms were3 week history of generalised malaise, lethargy, and bifrontal headache and 3 week history of left facial droop, right arm weakness, clumsiness and dysarthria. (getting this from my discharge referral note) My issues were left upper motor neuron facial droop and redused strenght in right arm, slurring dysarthria with uvula deviated to left, pathological reflexes in bilateral upper limbs with spread to fingers, normal neurological examination in lower limbs, CTB demonstrated no subacute stroke, MRI brain with gadolinium contrasted demonstrated multiple hyperintensities at the collosal spetal interface with perpendicular orientation without significant enhancement suggestive of demyelination. MRI spine demonstrated no demyelinating lesions (formal report pending)
Thought to have idiopathic demyelination which requires ongoing followup and further investigation.
Elevated CK on admission trending down prior to discharge
Left eye problem thought to be epimacular membrane with potential need for surgery in future
blurry vision in right eye
No known allergies
previous surgeries left rotator cuff repair.
so that's pretty much what started all this, the thing with my eye (left) I noticed a grey blurry spot in the center of my eye around the same time all the other symptoms started before I went to hospital. Have only been out of hospital like 4 weeks, and the pins n needles, pain in toes, limping and also full body tingles that go through from head to toe seemed to happen after I come out of hospital these seem to be new to me. even experienced a tingling down my left side of my face all around that went down across my jaw bone area.
I just read alot of the symptoms on here and alot of them seem very familiar but I don't really wish to jump the gun and say it is MS, I am just curious about it.
and yes you made sense =)
thanks again for your reply
Lee
COMMUNITY LEADER
Hi fellow Ozzie and welcome to our little MS community.
Most of our community is in a different health system than ours and you will probably notice the differences along you the way but i'm still going to recommend you seriously consider, contacting your states MS society and ask for a list of their recommended MS neurologists. The simple truth is that many of our 'general' neurologists don't have the experience of dxing and treating pwMS, and the more untypical you are, the longer it could potentially take to be dxed with the correct condition.
MS is not a simplistic dx because there are many many mimics, so the more experience your neurologist has in identifying MS vs it's mimics, the better off you will be, not only in the short term but for the potential long journey that's yet to come. And on that note........you will find a very long list of symptoms connected to MS but the sx's are also associated to many other conditions, so your 'clinical signs' of neurological causation are often more significant and should be heavily weighted to make MS sit higher or lower on your list of possible causes. Do you know your clinical signs?
A few examples of clinical signs suggestive of MS: Visual - Optic Neuritis, Nystagmus, Diplopia etc Physical - unilateral hyper-reflex, Clonus, foot drop, patches of desensitisation, Romberg etc
The MS hug is caused by spinal cord lesions, but i have actually seen similar experiences described by people with thyroid dysfunction and by people with anxiety issues (eg panic attacks). To me what you've described doesn't quite sound right for the MS hug, which is typically experienced as a banding/squeezing feeling, fully or partially going around the torso, though it does sound like the intercostal muscles were not allowing your ribcage to flex........so whilst i do think its probably an issue with your intercostal muscles, i'm not at all sure it was enough to of been the MS hug.
Cheers.............JJ
ps hope that made sense!
Most of our community is in a different health system than ours and you will probably notice the differences along you the way but i'm still going to recommend you seriously consider, contacting your states MS society and ask for a list of their recommended MS neurologists. The simple truth is that many of our 'general' neurologists don't have the experience of dxing and treating pwMS, and the more untypical you are, the longer it could potentially take to be dxed with the correct condition.
MS is not a simplistic dx because there are many many mimics, so the more experience your neurologist has in identifying MS vs it's mimics, the better off you will be, not only in the short term but for the potential long journey that's yet to come. And on that note........you will find a very long list of symptoms connected to MS but the sx's are also associated to many other conditions, so your 'clinical signs' of neurological causation are often more significant and should be heavily weighted to make MS sit higher or lower on your list of possible causes. Do you know your clinical signs?
A few examples of clinical signs suggestive of MS: Visual - Optic Neuritis, Nystagmus, Diplopia etc Physical - unilateral hyper-reflex, Clonus, foot drop, patches of desensitisation, Romberg etc
The MS hug is caused by spinal cord lesions, but i have actually seen similar experiences described by people with thyroid dysfunction and by people with anxiety issues (eg panic attacks). To me what you've described doesn't quite sound right for the MS hug, which is typically experienced as a banding/squeezing feeling, fully or partially going around the torso, though it does sound like the intercostal muscles were not allowing your ribcage to flex........so whilst i do think its probably an issue with your intercostal muscles, i'm not at all sure it was enough to of been the MS hug.
Cheers.............JJ
ps hope that made sense!
Thanks for the reply Alex.
I am really happy with my neuro, she has run a gauntlet of tests, says she is leaning toward M.S but does not wish to commit to a dx yet as some people when getting any diagnosis that they may not understand can go off the deep end and even knock themselves (suicide) she says she wishes to be sure she has ruled everything else out first. It's just the waiting game I'm not too good with, I haveto go back to work soon and not sure if any of the things that put me into hospital will happen again, under stress if you know what I mean.
another symptom I forgot to add was that a few times I have woken up with very painful ribs, I know it's not the way I am sleeping as I have slept the same way for years with no problem, sometimes the pain starts on one side of my ribs, not the side I am sleeping on, then goes right across the whole rib cage, it's like someone has taken a knife and stabbed me between each rib bone when I move, it doesn't last too long, usually about 20mins or less but it is excruciating. I have never experienced this ever before and makes it very hard to even take a breath. I am wondering if this is similar to an M.S Hug?
I guess with the waiting game I should learn a little patience, though it's not really my strong suit lol.
As soon as I see my neurologist again (hopefully next week) I will address the things I am experiencing with her =)
Lee.
I am really happy with my neuro, she has run a gauntlet of tests, says she is leaning toward M.S but does not wish to commit to a dx yet as some people when getting any diagnosis that they may not understand can go off the deep end and even knock themselves (suicide) she says she wishes to be sure she has ruled everything else out first. It's just the waiting game I'm not too good with, I haveto go back to work soon and not sure if any of the things that put me into hospital will happen again, under stress if you know what I mean.
another symptom I forgot to add was that a few times I have woken up with very painful ribs, I know it's not the way I am sleeping as I have slept the same way for years with no problem, sometimes the pain starts on one side of my ribs, not the side I am sleeping on, then goes right across the whole rib cage, it's like someone has taken a knife and stabbed me between each rib bone when I move, it doesn't last too long, usually about 20mins or less but it is excruciating. I have never experienced this ever before and makes it very hard to even take a breath. I am wondering if this is similar to an M.S Hug?
I guess with the waiting game I should learn a little patience, though it's not really my strong suit lol.
As soon as I see my neurologist again (hopefully next week) I will address the things I am experiencing with her =)
Lee.
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At least get the symptoms addressed. For any illness that is the key. Not having to suffer while the Grown Ups decide what to call it.
I found a great pain clinic. The quibble if my pain is MS or Cancer but they treat the pain. I see my MS Specialist once a year he does an exam and then I go on my merry way.
I thought I would be diagnosed with MS and then a team of specialist would jump on fixing it. I have seen too much house.
Even Oncologists are not very exciting in treating you. I thought mortality gave street cred. No they are even caught in their systems.
Care for yourself and have a good PCP to run most things by. When you have to see the Specialists cut them some slack they are often time clueless.
Alex