Aa
I'm new but I don't know what to do next...
Hello all!
I'm new here so I hope i'm doing this correctly! I've been having weird symptoms for over a year now and nobody can tell me anything about it! It's so frustrating and I was hoping for maybe some advice on my next step!
I've been having vertigo for the past year. Not really me moving, more of a room shifting and a general feeling of unsteadiness. I've noticed that this has subsided slightly, but gets a lot worse in heat, such as when I take a shower or get in a hot tub, etc. It subsides quickly once I get cooled back down. I've also been having pain in the joints, lower back, knees, hips. Which now feels like someone is sticking a sharp object into my joints. I've experienced blurred vision, and problems seeing at night. Numbness and tingling in my legs and feet, a weird cell phone vibrating sensation in the tops of my thighs, and muscle weakness in my arms and legs, which again gets worse when I'm in the shower. I also have a lot of fatigue. When I wake up in the morning I feel fine, but after I get ready I feel like I could go right back to sleep. I feel this way on and off all day long. I have these weird jerking/muscle twitching sensations multiple times a day. Lastly, I have some bowel problems. I have diarrhea everyday, and occasionally I will feel like I need to urinate but will have problems actually starting the flow. Recently (the last week or so) i've noticed that everytime I have vertigo, the bottom of my tongue and lower part of my jaw get this numb feeling.
I've had an MRI which came back relatively normal, showing a few place of white matter on the peripheral part of my brain. I had an EMG and an EEG and they both came back normal. I've also had a lumbar puncture which came back normal. I've had blood tests for lupus, RA, and a ton of other autoimmune diseases which all came back fine, except my B12 and vitamin D were low. I've since been treated for this, but my symptoms continue. I've had balance testing done, and my ENT said I had some sort of balance issue however it was not vestibular in nature. My neurologist said at first he thought the vertigo was migraine variant and began treating me with topomax. I was on it for several months but it did not help, in fact it made some of my symptoms worse. He took me off of the topomax.
Migraine variant and sleep apnea are in the differential, as well as MS. I went to the Mayo Clinic for a second opinion, and the dr. There said the vertigo was migraine variant, but he had no idea what was causing the rest of my symptoms, but it definitely was not MS because my MRI and LP came back normal. I want to blindly take this as truth, but I can't help wonder what is causing the rest of my symptoms. Is it possible for it to still be MS if all my tests were normal? I'm just at a loss on what to do! I'm starting to feel like it's all in my head and I'm just crazy or something! I just need help on what my next step is! I'm only 24 years old and would like to get this fixed ASAP, whatever it is!
Thanks so much for reading this! It was really long and I'm really sorry but I really appreciate it! Any help or advice anyone could give me would be amazingly helpful! Thanks again!
Laura
I'm new here so I hope i'm doing this correctly! I've been having weird symptoms for over a year now and nobody can tell me anything about it! It's so frustrating and I was hoping for maybe some advice on my next step!
I've been having vertigo for the past year. Not really me moving, more of a room shifting and a general feeling of unsteadiness. I've noticed that this has subsided slightly, but gets a lot worse in heat, such as when I take a shower or get in a hot tub, etc. It subsides quickly once I get cooled back down. I've also been having pain in the joints, lower back, knees, hips. Which now feels like someone is sticking a sharp object into my joints. I've experienced blurred vision, and problems seeing at night. Numbness and tingling in my legs and feet, a weird cell phone vibrating sensation in the tops of my thighs, and muscle weakness in my arms and legs, which again gets worse when I'm in the shower. I also have a lot of fatigue. When I wake up in the morning I feel fine, but after I get ready I feel like I could go right back to sleep. I feel this way on and off all day long. I have these weird jerking/muscle twitching sensations multiple times a day. Lastly, I have some bowel problems. I have diarrhea everyday, and occasionally I will feel like I need to urinate but will have problems actually starting the flow. Recently (the last week or so) i've noticed that everytime I have vertigo, the bottom of my tongue and lower part of my jaw get this numb feeling.
I've had an MRI which came back relatively normal, showing a few place of white matter on the peripheral part of my brain. I had an EMG and an EEG and they both came back normal. I've also had a lumbar puncture which came back normal. I've had blood tests for lupus, RA, and a ton of other autoimmune diseases which all came back fine, except my B12 and vitamin D were low. I've since been treated for this, but my symptoms continue. I've had balance testing done, and my ENT said I had some sort of balance issue however it was not vestibular in nature. My neurologist said at first he thought the vertigo was migraine variant and began treating me with topomax. I was on it for several months but it did not help, in fact it made some of my symptoms worse. He took me off of the topomax.
Migraine variant and sleep apnea are in the differential, as well as MS. I went to the Mayo Clinic for a second opinion, and the dr. There said the vertigo was migraine variant, but he had no idea what was causing the rest of my symptoms, but it definitely was not MS because my MRI and LP came back normal. I want to blindly take this as truth, but I can't help wonder what is causing the rest of my symptoms. Is it possible for it to still be MS if all my tests were normal? I'm just at a loss on what to do! I'm starting to feel like it's all in my head and I'm just crazy or something! I just need help on what my next step is! I'm only 24 years old and would like to get this fixed ASAP, whatever it is!
Thanks so much for reading this! It was really long and I'm really sorry but I really appreciate it! Any help or advice anyone could give me would be amazingly helpful! Thanks again!
Laura
just want to say..i am in the exact same bat as you...i hope you get some answers. my PCP is in the same boat as your doctor as well. everytime i mention a symptom like "what can cause (blank)" her first answer is usually "MS can cause that"...although i have never been diagnosed (negative testing here too except for positive rhomberg test for the last 3 years and some numbness) she tries to treat my symptoms...i have horrible "vertigo" too although its not really vertigo becasue the room doesnt spin but i feel like i am going to fall at any moment...all the time, and have fallen, but i have never been able to get a neurologist to keep me as a patient becasue without any positive test confirmation it is like they just dont need to do anything else. well, just wanted to add the sentiment that you are definatly not alone. i hope for your sake you are in a cool environment...i am in virginia and it is scortching here lately and i am having a very difficult time with the heat...i can hardly see, breath or stay on my feet...praying things are better for you :) good luck.
COMMUNITY LEADER
Hey Laura,
I think your PCP is a keeper, playing it straight even when things are still not clear cut, its also really good that you have confidence in your medical team, which you seem to have, so a difficult hoop you dont have to jump through, yeah! lol
With clarity i dont think MS could be off the table yet (sorry), with the heat sensitivity it sounds like your describing 'classic MS Fatigue', the rise in your internal core temperature temporarily taking away your strength until you have cooled down and rested. Even with the hair drying the heat could be more of a factor than the prolonged raising of your arms, the hair dryer getting heavier and heavier so your arm weakness more noticeable, but i suspect your hole body is being affected but its your arms that stand out more.
When i think of spasms, i think of muscle, they can be a fast rhythm or slow like morse code, often a visible movement of the muscle thats being affected, though we have so many muscles in our bodies that most we dont realise we have until they spasm. Spasms can hurt like the dickins or not at all, depending which muscle it is.
When i think of jerks i think of limbs more than anything, action tremors, so when reaching for something, just before you hit the target the limb of its own accord just jerks, which makes you knock things over, drop or spill etc. You can also get these types of jerks in your lower limbs, which affects your walking stride, makes me think of the offending limb being inhabited by a naughty gremlin with a mind of its own. Jerks are usually unexpected, uncontrolled and from what i remember they can affect your head, arms and legs.
With the cell phone vibration, bazaar feeling i know, i have it in one spot below the knee of my left leg. It fits into paresthesia, i think of it as a very fine but fast muscle spasm but someone else might have the technical information for why it happens.
If you have circulation issues this can affect your feet and calf areas, this goes into the grey areas for cause, common for MSers but more common is pins and needles that hit a spot some where on their body. Often outside the realms of circulation being the cause, with circulation the lower limbs are getting a restricted blood flow, just like if you sit on your legs they will eventually loose blood flow (circulation) and get the pins and needles feeling.
Hope i've helped some what with this additional info :-)
Cheers.......JJ
I think your PCP is a keeper, playing it straight even when things are still not clear cut, its also really good that you have confidence in your medical team, which you seem to have, so a difficult hoop you dont have to jump through, yeah! lol
With clarity i dont think MS could be off the table yet (sorry), with the heat sensitivity it sounds like your describing 'classic MS Fatigue', the rise in your internal core temperature temporarily taking away your strength until you have cooled down and rested. Even with the hair drying the heat could be more of a factor than the prolonged raising of your arms, the hair dryer getting heavier and heavier so your arm weakness more noticeable, but i suspect your hole body is being affected but its your arms that stand out more.
When i think of spasms, i think of muscle, they can be a fast rhythm or slow like morse code, often a visible movement of the muscle thats being affected, though we have so many muscles in our bodies that most we dont realise we have until they spasm. Spasms can hurt like the dickins or not at all, depending which muscle it is.
When i think of jerks i think of limbs more than anything, action tremors, so when reaching for something, just before you hit the target the limb of its own accord just jerks, which makes you knock things over, drop or spill etc. You can also get these types of jerks in your lower limbs, which affects your walking stride, makes me think of the offending limb being inhabited by a naughty gremlin with a mind of its own. Jerks are usually unexpected, uncontrolled and from what i remember they can affect your head, arms and legs.
With the cell phone vibration, bazaar feeling i know, i have it in one spot below the knee of my left leg. It fits into paresthesia, i think of it as a very fine but fast muscle spasm but someone else might have the technical information for why it happens.
If you have circulation issues this can affect your feet and calf areas, this goes into the grey areas for cause, common for MSers but more common is pins and needles that hit a spot some where on their body. Often outside the realms of circulation being the cause, with circulation the lower limbs are getting a restricted blood flow, just like if you sit on your legs they will eventually loose blood flow (circulation) and get the pins and needles feeling.
Hope i've helped some what with this additional info :-)
Cheers.......JJ
First things first, to everyone, thank you so much for your answers. You were all so helpful, and made me feel like this is all seriously happening to me, not something i've just built up in my head. So thank you so much!
Tonyad - Thank you. In answer to the B-12 issue, I had it checked about a month ago and it was actually high. Well over 1200. And I still continued to have symptoms, even adding new symptoms when my B-12 was high. As for the migraines, I don't have headaches. I don't want to say i've never had a headache, because everyone has! But nothing horrible, and I don't have them on a regular basis. If I do get a headache it usually lasts a few minutes and then is gone. But again, this is probably maybe once every couple of weeks, if that.
I wasn't planning on seeking a new neurologist. I really do like mine. I feel like he is trying to figure out what is wrong with me. Even though he has no idea! MY experience at the Mayo Clinic was not so wonderful however, When they told me they didn't know what was wrong, that was it. It was almost like they didn't believe anything actually was going on. They said the vertigo was possibly migraine variant, the rest, we don't have a clue. Sorry. Luckily my neurologist at home is not like that at all!
I'm glad to hear that I do not have to have a positive MRI or LP to get a diagnosis. When I got back from the Mayo, all excited because "I didn't have MS" and my PCP told me they shouldn't have told me that because 5% of people with MS present with both negative MRI's and LP's, well I just can't explain the feeling. They're suggesting MRI's every couple of months now. So I dunno, but I really am glad to hear someone else say that!
Thanks so much! I will check out the Health Pages and see what they say!
Supermum_ms - I'm sorry for not really making my symptoms so clear! I need to work on that and I really like the way you broke that down for me! I'm going to write it down and take it with me to my neuro appointment. Maybe it'll make it easier for him that way! As for the pins and needles in my legs, I get them in my calfs and feet. It doesn't have to be both. I know that most of my symptoms are occur more on the left side of my body. But I do have them in both legs sometimes.
The spasms/jerks that I have happen all over my entire body. My fingers, arms, legs, toes, occasionally my entire torso will jerk. I feel the cell phone vibration thing usually only in the right top part of my upper thigh. The muscle weakness does occur in both the top and bottom halves of my body. However, it's usually only once at a time. Like when i'm standing in the shower, my legs get too weak to hold me up. Or when I'm drying my hair my arms get to weak to hold the hairdryer up. I don't know if any of this helps, but I just wanted to clarify!
Again, thanks for all of the advice you all have given me! It was very helpful! I was so close to giving up, and just keeping it all to myself! So thanks everyone again! I have an appt with my neuro on Friday, i'll let you know what he thinks/decides is the next step!
Laura
Tonyad - Thank you. In answer to the B-12 issue, I had it checked about a month ago and it was actually high. Well over 1200. And I still continued to have symptoms, even adding new symptoms when my B-12 was high. As for the migraines, I don't have headaches. I don't want to say i've never had a headache, because everyone has! But nothing horrible, and I don't have them on a regular basis. If I do get a headache it usually lasts a few minutes and then is gone. But again, this is probably maybe once every couple of weeks, if that.
I wasn't planning on seeking a new neurologist. I really do like mine. I feel like he is trying to figure out what is wrong with me. Even though he has no idea! MY experience at the Mayo Clinic was not so wonderful however, When they told me they didn't know what was wrong, that was it. It was almost like they didn't believe anything actually was going on. They said the vertigo was possibly migraine variant, the rest, we don't have a clue. Sorry. Luckily my neurologist at home is not like that at all!
I'm glad to hear that I do not have to have a positive MRI or LP to get a diagnosis. When I got back from the Mayo, all excited because "I didn't have MS" and my PCP told me they shouldn't have told me that because 5% of people with MS present with both negative MRI's and LP's, well I just can't explain the feeling. They're suggesting MRI's every couple of months now. So I dunno, but I really am glad to hear someone else say that!
Thanks so much! I will check out the Health Pages and see what they say!
Supermum_ms - I'm sorry for not really making my symptoms so clear! I need to work on that and I really like the way you broke that down for me! I'm going to write it down and take it with me to my neuro appointment. Maybe it'll make it easier for him that way! As for the pins and needles in my legs, I get them in my calfs and feet. It doesn't have to be both. I know that most of my symptoms are occur more on the left side of my body. But I do have them in both legs sometimes.
The spasms/jerks that I have happen all over my entire body. My fingers, arms, legs, toes, occasionally my entire torso will jerk. I feel the cell phone vibration thing usually only in the right top part of my upper thigh. The muscle weakness does occur in both the top and bottom halves of my body. However, it's usually only once at a time. Like when i'm standing in the shower, my legs get too weak to hold me up. Or when I'm drying my hair my arms get to weak to hold the hairdryer up. I don't know if any of this helps, but I just wanted to clarify!
Again, thanks for all of the advice you all have given me! It was very helpful! I was so close to giving up, and just keeping it all to myself! So thanks everyone again! I have an appt with my neuro on Friday, i'll let you know what he thinks/decides is the next step!
Laura
CORRECTION Health Pages are located at the top RIGHT
hand side of the page.
DUH!!!!! Sorry, the old brain just is not what it used to be..Lol
Also, I noticed several spelling errors in my post...NOPE, i am not ignorant but rather
fingers and brain do not play nice together as well as I also invert letters....So Sorrry.
ANyhow, Again Keep us posted,
~Tonya
Laura,
Welcome to the forum :) !!
I'm sorry that you are going through all of this and know how frustrating and scary it is. I see that you went to the Mayo clinic for a second opinion so I'm guessing that you spoke to a neuro there.
Some of us have seen lots of neuro's along the way. If you do not have a doctor in the mix that you feel comfortable with that is the most important place to start and leaving one for another can be hard but if they are not giving you a feeling of confidence then you really need to keep searching.
It may sound funny but I recommend a Rheumatologist (sp?) instead of a neurologist. Like so many of us that have been through this limbo land you have so many symptoms that a lot of the doctors will only look for certain criteria or something obvious on one test.
A Rheumy is used to difficult cases because that is where most people end up after tons of searching. It has been my experience that they will keep searching until they find an answer and they won't think that it's in your head - you shouldn't either.
Speaking of in your head you might want to consider speaking to your primary doctor about antidepressants. They can not only help with depression if you are beginning to suffer (normal reaction to your history) but some can also treat some of your symptoms.
Hang in there and good luck. Remember you are not alone and keep us posted with updates on your journey.
Hugs,
Erin :)
Welcome to the forum :) !!
I'm sorry that you are going through all of this and know how frustrating and scary it is. I see that you went to the Mayo clinic for a second opinion so I'm guessing that you spoke to a neuro there.
Some of us have seen lots of neuro's along the way. If you do not have a doctor in the mix that you feel comfortable with that is the most important place to start and leaving one for another can be hard but if they are not giving you a feeling of confidence then you really need to keep searching.
It may sound funny but I recommend a Rheumatologist (sp?) instead of a neurologist. Like so many of us that have been through this limbo land you have so many symptoms that a lot of the doctors will only look for certain criteria or something obvious on one test.
A Rheumy is used to difficult cases because that is where most people end up after tons of searching. It has been my experience that they will keep searching until they find an answer and they won't think that it's in your head - you shouldn't either.
Speaking of in your head you might want to consider speaking to your primary doctor about antidepressants. They can not only help with depression if you are beginning to suffer (normal reaction to your history) but some can also treat some of your symptoms.
Hang in there and good luck. Remember you are not alone and keep us posted with updates on your journey.
Hugs,
Erin :)
COMMUNITY LEADER
Hey Lara,
Welcome to our little corner of the web, you have a lot going on right now, looking for answers and still being in limbo isnt a good place to be. Limbo landers dont necessarily end up dx with MS, there are a few mimics that can also take years to determine. Most though not all MSers end up in limbo for years, waiting for all the tests to catch up with what their body is already telling them.
As a lay person and a limbo lander my self, a few things stand out as not quite right for MS, though that could simply from the way you have described things. To make it easier for me to read i had to break it down and this is what i came up with....
Vertigo - room moves, shifts or tilts
Heat sensitive - Temperature exacerbates the vertigo
*Joint pain - hips, knees, lower back ???
Blurred vision
*Night blindness ??
*Bilateral (L & R) lower limb paresthesia - pins and needles in thighs and feet
*Bilateral (L & R) lower limb paresthesia - vibration, muscle weakness, spasms, jerks
*Bilateral (L & R) upper limb paresthesia - muscle weakness, spasms, jerks
Face paresthesia - tongue and jaw numb
Fatigue - not resolved through sleep, all over lethargic feeling
Bladder issues - Urge flow problems
Bowel issues - diarrhea
B12 deficiency
Vitamin D deficiency
The * are atypical for MS, the paresthesia issues them selves are very common but it is unusual for all limbs to be affected with the same sx, more common is one limb or one side of the body, over time it can incorporate all limbs but since your only in your 20's it would be a red flag. Red flag away from MS i'm thinking.
I have no doubt that something is going wrong with your system, i was thinking diabetes, adrehnal insufficientcy, hypoglycemia or thyroid, etc but i would think those things would of also been looked into during your various blood tests. What ever it is still needs investigating, which i hope your continue to do.
Cheers.....JJ
Welcome to our little corner of the web, you have a lot going on right now, looking for answers and still being in limbo isnt a good place to be. Limbo landers dont necessarily end up dx with MS, there are a few mimics that can also take years to determine. Most though not all MSers end up in limbo for years, waiting for all the tests to catch up with what their body is already telling them.
As a lay person and a limbo lander my self, a few things stand out as not quite right for MS, though that could simply from the way you have described things. To make it easier for me to read i had to break it down and this is what i came up with....
Vertigo - room moves, shifts or tilts
Heat sensitive - Temperature exacerbates the vertigo
*Joint pain - hips, knees, lower back ???
Blurred vision
*Night blindness ??
*Bilateral (L & R) lower limb paresthesia - pins and needles in thighs and feet
*Bilateral (L & R) lower limb paresthesia - vibration, muscle weakness, spasms, jerks
*Bilateral (L & R) upper limb paresthesia - muscle weakness, spasms, jerks
Face paresthesia - tongue and jaw numb
Fatigue - not resolved through sleep, all over lethargic feeling
Bladder issues - Urge flow problems
Bowel issues - diarrhea
B12 deficiency
Vitamin D deficiency
The * are atypical for MS, the paresthesia issues them selves are very common but it is unusual for all limbs to be affected with the same sx, more common is one limb or one side of the body, over time it can incorporate all limbs but since your only in your 20's it would be a red flag. Red flag away from MS i'm thinking.
I have no doubt that something is going wrong with your system, i was thinking diabetes, adrehnal insufficientcy, hypoglycemia or thyroid, etc but i would think those things would of also been looked into during your various blood tests. What ever it is still needs investigating, which i hope your continue to do.
Cheers.....JJ
Hi there. I do not think that we have chatted yet..So, Hello.. :)
First of all, the term migraine variant usually is not referring to a specific type of migraine. Let me explain. The International Headache Society has come up with a list of classifications of migraine and other headaches, in an attempt to better standardize diagnosis. In other words, it helps if all doctors are using the same language, otherwise there can be a great deal of confusion. If one doctor calls your migraine one thing, and your neurologist calls it something else, you can be left wondering who you should ask next!
Secondly: How long ago has it been since you have had your B-12 RE-CHECKED??
i ask this because eve a minor low B-12 can cause several of the neurological sx you have descibed. The most common causes of vitamin B12 deficiency is an autoimmune condition known as pernicious anemia which could also explain the fatigue.
The neurologic symptoms of vitamin B12 deficiency include numbness and tingling of the arms and, more commonly, the legs, difficulty walking, memory loss, disorientation, and dementia with or without mood changes.
A number of drugs reduce the absorption of vitamin B12. Proton pump inhibitors such as Omeprazole, used for gastroesophageal reflux disease (GERD), markedly decrease stomach acid secretion required for the release of vitamin B12 from food.
on the Flip side of the coin...yes, a lot of your sx do sound neurological.
Are you seeking a new Neurologist? If not...perhaps it is time you do.
you do NOT have to have a positive mRI or LP to be dx w/ MS. It is mainly a clinical dx. Have you checked out the 'Health Pages" on the top left corner? If not, you will find the dx criteria in there.
i wish you luck in finding answers....Let me ask you...Do You Even Have Headaches????? Sorry if you already put tht in your post but it was hard for me to read due to it not being broken in to smaller paragraphs for my feble (sp) eyes ..Lol
So sorry if you have already stated..
Take Care,
~Tonya
hey alot of us here have felt crazy before we were told -ms- and some have said the mri is not proof positive it is ms-
so hang in there and like bibi said- you still need something 4 symptoms -no mater what it is you need relief- and u - r-- not crazy!!
hugs tick
so hang in there and like bibi said- you still need something 4 symptoms -no mater what it is you need relief- and u - r-- not crazy!!
hugs tick
ABSOLUTELY GET TO A NEUROLOGIST!!
i hope everything is figured out and you will be fine (:
keep us posted
i hope everything is figured out and you will be fine (:
keep us posted
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