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Neurological or bad circulation? Ms type symtoms.
Hi. I've been reading the posts on this forum for a while and you seem such a friendly helpful group of guys, that I thought I'd post a question for some advice please. Back in July I started to get a very slight dizziness that would last a few minutes. This happened a few times. Then one morning as I sat watching the telly a severe wave of dizziness came on me and I went to bed and slept for a few hours and felt ok. A few weeks after this, I had the same thing happen. I woke up feeling normal and as I got out of bed the dizziness hit me very severely. My legs were wobbly and I could hardly walk. After this second attack, it didn't really go away. It was quite bad for about two weeks and my head felt woolly but I get it every day now, on and off during the day. It's not vertigo (spinning) but a feeling of giddiness. At the same time this dizziness started, I also felt a weird weak feeling, especially if walking anywhere. My legs would feel like jelly. I've had pins and needles in my hands and feet on and off for a few years, and didn't think anything of it. In the last few months the pins and needles have increased and are there all the time now. They wax and wane with intensity and can go up my calves but usually mainly feet and hands. My arms are also weak and aching all the time now. I get sharp stabbing pains in my legs sometimes and my arms. I've also had some tingling in my lips and side of face which has never happened before. This started a few weeks ago. My doc ordered lots of different blood tests back in Sep/Oct- all normal. He referred me to a neurologist who I saw a couple of weeks ago. Five minutes into the appointment after I described my symptoms, the neuro said it was most likely my circulation. She said the only thing not tested for was cholesterol. I mentioned that I'd had a free health check about 2 years ago and that had been fine then. Then she did the reflex tests. All were fine except the tandem gait test, which I wobbled badly with. She had to support my arm as I tried to walk. She discharged me. As I thought I had nothing to lose, as she was discharging me, I thought I'd mention 'ms', to which she said, it most definitely wasn't ms, she could assure me of that. I've chased up my doc for her report, but not through yet. Will wait til New Year now. The weak jelly legs I've had on and off for about two years, as well as the pins and needles, but the dizziness and feeling weak and 'out of sorts' has only happened since July. I've never had dizziness before. The neuro said I had BPPV, but I don't feel like I have that?? Any suggestions of what I can chase up with my doc would be most appreciated. Many thanks in advance.
Hi Sarah, thank you for your comment. If I have not improved in a month's time I will certainly be pushing for an mri. I'm sure this doctor will be happy for that if the over breathing turns out to be not the cause.
Another factor that convinces me this lack of carbon dioxide in my system is the culprit, is another 'problem' that has arisen recently which I thought was just a coincidence. I stopped drinking alcohol back in July. I'd decided to have a beer back in October. As I was drinking a small glass of beer, my ears became very itchy inside and my throat. Then my throat felt like sharp blades were stabbing it, every time I took a sip of beer. I had some small patches of hives on my chest. So, no more alcohol for a few more weeks.
Then in early December I tried a small glass of Bucks Fizz. The same thing happened. Middle of December I tried a few sips of white wine but again same reaction. Then on Christmas day evening, I tried a small glass of port. I didn't feel the sharp blades in my throat, but felt a bit itchy, but not too bad. Then about twenty minutes later my whole body and face broke out in severe hives.
I mentioned this to the doc yesterday, but he didn't make anything of it. Since researching the over breathing I've found out that the lack of CO2 will cause more histamine to be produced in the blood, so no wonder my body is reacting to alcohol. So I'm strongly inclined to suspect that my problems are down to this imbalance of oxygen and carbon dioxide in my blood- but time will tell. :)
Another factor that convinces me this lack of carbon dioxide in my system is the culprit, is another 'problem' that has arisen recently which I thought was just a coincidence. I stopped drinking alcohol back in July. I'd decided to have a beer back in October. As I was drinking a small glass of beer, my ears became very itchy inside and my throat. Then my throat felt like sharp blades were stabbing it, every time I took a sip of beer. I had some small patches of hives on my chest. So, no more alcohol for a few more weeks.
Then in early December I tried a small glass of Bucks Fizz. The same thing happened. Middle of December I tried a few sips of white wine but again same reaction. Then on Christmas day evening, I tried a small glass of port. I didn't feel the sharp blades in my throat, but felt a bit itchy, but not too bad. Then about twenty minutes later my whole body and face broke out in severe hives.
I mentioned this to the doc yesterday, but he didn't make anything of it. Since researching the over breathing I've found out that the lack of CO2 will cause more histamine to be produced in the blood, so no wonder my body is reacting to alcohol. So I'm strongly inclined to suspect that my problems are down to this imbalance of oxygen and carbon dioxide in my blood- but time will tell. :)
I'd still want an MRI and a different neuro.
Have you been checked for lupus? There are at least 20 other diseases that "mimic" MS and we want you to get answers, but hope we don't have to poke Kyle for blood to print your invitation to MS-land.
(kidding Kyle)
It took me almost 30 yrs to get an official Dx…so its a slow turtle moving and may involve several neurologists. I am on #4, who's wonderful.
Good luck and stop by anytime!
Have you been checked for lupus? There are at least 20 other diseases that "mimic" MS and we want you to get answers, but hope we don't have to poke Kyle for blood to print your invitation to MS-land.
(kidding Kyle)
It took me almost 30 yrs to get an official Dx…so its a slow turtle moving and may involve several neurologists. I am on #4, who's wonderful.
Good luck and stop by anytime!
Hi everyone. I hope you've all had a good Christmas. Just a quick update on my situation. I went to the doctors yesterday. I'd been feeling quite dizzy and weak since boxing day. Thankfully the report from my neurology appointment in Nov, was back and the doc had it on the screen for me, as I entered his room.
I'd prayed before hand that I'd picked the right doctor who would get to the bottom of things (there are about ten docs to choose from), and I do believe he has certainly highlighted something that could very well be the culprit to my health problems which seemed to indicate MS.
He quickly established by checking blood flow and pulses on my hands and feet that my circulation was absolutely fine (as I had suspected). He checked back and saw that my cholesterol test taken two years ago was really good (one of the best he'd seen) and according to all my stats, I had a heart about 3 years younger than my actual age.
We then checked out the BPPV diagnosis which as I'd suspected was not this. He got me to lay down and did some manoeuvres which would have brought on the dizziness if that was what I'd had. I was fine. NOT BPPV!
As I got off the couch he remarked that my breathing was very fast and that I breathe from high up and not from my diaphragm. I was in effect hyperventilating or over breathing, which can lead to too little carbon dioxide in the blood which then leads to tingling in the extremities, dizziness, and a whole host of other symptoms which I have e.g fatigue.
I was gobsmacked to say the least. I've noticed for a few years that I breathe quite quickly and struggle to get my breath. He said I'd got into a bad habit of breathing incorrectly. I've been researching this condition called 'hyperventilation syndrome' and it's very common it seems. I really do think he's hit the nail on the head. I've ordered a book that teaches you how to breathe properly. He says to give it a month and go back if no improvement. I'll let you know how it goes. I suspect many people with similar symptoms to mine may be over breathing too!! There is a simple test to see if you are. I'll await some feedback and then post a bit more info, as don't want to make this comment too long. :)
I'd prayed before hand that I'd picked the right doctor who would get to the bottom of things (there are about ten docs to choose from), and I do believe he has certainly highlighted something that could very well be the culprit to my health problems which seemed to indicate MS.
He quickly established by checking blood flow and pulses on my hands and feet that my circulation was absolutely fine (as I had suspected). He checked back and saw that my cholesterol test taken two years ago was really good (one of the best he'd seen) and according to all my stats, I had a heart about 3 years younger than my actual age.
We then checked out the BPPV diagnosis which as I'd suspected was not this. He got me to lay down and did some manoeuvres which would have brought on the dizziness if that was what I'd had. I was fine. NOT BPPV!
As I got off the couch he remarked that my breathing was very fast and that I breathe from high up and not from my diaphragm. I was in effect hyperventilating or over breathing, which can lead to too little carbon dioxide in the blood which then leads to tingling in the extremities, dizziness, and a whole host of other symptoms which I have e.g fatigue.
I was gobsmacked to say the least. I've noticed for a few years that I breathe quite quickly and struggle to get my breath. He said I'd got into a bad habit of breathing incorrectly. I've been researching this condition called 'hyperventilation syndrome' and it's very common it seems. I really do think he's hit the nail on the head. I've ordered a book that teaches you how to breathe properly. He says to give it a month and go back if no improvement. I'll let you know how it goes. I suspect many people with similar symptoms to mine may be over breathing too!! There is a simple test to see if you are. I'll await some feedback and then post a bit more info, as don't want to make this comment too long. :)
As an aside, my hubby's aunt was diagnosed with MS 25+ years ago. With the strong incidence of MS in your family, it's not a wonder you would equate your symptoms with possibly being MS related.
Please do keep us updated on what you find out.
Regards,
C
Please do keep us updated on what you find out.
Regards,
C
Hi guys, thank you all so much for taking the time to read my rather lengthy post. Sorry about that. It does read better broken up. Thank you Kyle. I'm sure the neuro is right, and it isn't MS.
I suppose I suspect MS because my dad developed PPMS in his 50s. His brother has RRMS and their uncle had MS too. The tingling started in my right hand about two years ago and was intermittent but regular. The weak jelly legs started about two years ago too and is intermittent. The tingling in my feet has come on in the last year and I now have tingling all the time in both hands and feet. A few weeks ago the tingling spread to my calves and I had some tingling in my face for about a week. I've noticed that a few times since.
I think you are all right in that I need to get an MRI if things continue. I will certainly check out the circulation issue and enquire about the A1C test. Thank you again for all your input. It's good to share these concerns. I will let you know how it goes. :)
I suppose I suspect MS because my dad developed PPMS in his 50s. His brother has RRMS and their uncle had MS too. The tingling started in my right hand about two years ago and was intermittent but regular. The weak jelly legs started about two years ago too and is intermittent. The tingling in my feet has come on in the last year and I now have tingling all the time in both hands and feet. A few weeks ago the tingling spread to my calves and I had some tingling in my face for about a week. I've noticed that a few times since.
I think you are all right in that I need to get an MRI if things continue. I will certainly check out the circulation issue and enquire about the A1C test. Thank you again for all your input. It's good to share these concerns. I will let you know how it goes. :)
Cheers Kyle!
Hi Catty.
I'm sorry your experiencing this distressing collection of symptoms. MS is not something that leaps out to me. Some of the sensations you mention do crop up with MS, but as Kyle said, they usually manifest differently.
I glad your doctor is making sure that certain things are taken off the table with those blood tests. I can only second Kyle's curiosity about MRIs. Have you had one? Have they been mentioned? They're not infallible as a testing method, but it certainly could provide you with more information to go on. There may be something going on in the spine causing your paresthesia, for example.
Hi Catty.
I'm sorry your experiencing this distressing collection of symptoms. MS is not something that leaps out to me. Some of the sensations you mention do crop up with MS, but as Kyle said, they usually manifest differently.
I glad your doctor is making sure that certain things are taken off the table with those blood tests. I can only second Kyle's curiosity about MRIs. Have you had one? Have they been mentioned? They're not infallible as a testing method, but it certainly could provide you with more information to go on. There may be something going on in the spine causing your paresthesia, for example.
Some of what you describe might be MS related, some not so much.
The weakness and dizziness are on the list of MS related symptoms. For most of us, weakness is something we experience when we are in a relapse. My legs felt like they weighed 400 LBS each during my last relapse. I felt like I didn't have the strength to lift them.
While pins & needles are a frequent symptom, it usually affects one side rather than both. Are your pins and needles on both sides, i.e. left & right foot, or just one side.
The clinical exam is the most important part of the MS diagnosis. As there is not definitive test for MS, we rely on the trained eye of neurologists who specialize in MS. In your case the neuro doesn't seem to think it's MS.
Has there been any discussion of MRI's?
Kyle
The weakness and dizziness are on the list of MS related symptoms. For most of us, weakness is something we experience when we are in a relapse. My legs felt like they weighed 400 LBS each during my last relapse. I felt like I didn't have the strength to lift them.
While pins & needles are a frequent symptom, it usually affects one side rather than both. Are your pins and needles on both sides, i.e. left & right foot, or just one side.
The clinical exam is the most important part of the MS diagnosis. As there is not definitive test for MS, we rely on the trained eye of neurologists who specialize in MS. In your case the neuro doesn't seem to think it's MS.
Has there been any discussion of MRI's?
Kyle
Hi Catty - Welcome to the group :-)
Many of our friends here have difficulty reading large blocks of text. We try to break things up in order to facilitate better response. I have taken the liberty of breaking up you original post...
Kyle
Hi. I've been reading the posts on this forum for a while and you seem such a friendly helpful group of guys, that I thought I'd post a question for some advice please.
Back in July I started to get a very slight dizziness that would last a few minutes. This happened a few times. Then one morning as I sat watching the telly a severe wave of dizziness came on me and I went to bed and slept for a few hours and felt ok.
A few weeks after this, I had the same thing happen. I woke up feeling normal and as I got out of bed the dizziness hit me very severely. My legs were wobbly and I could hardly walk.
After this second attack, it didn't really go away. It was quite bad for about two weeks and my head felt woolly but I get it every day now, on and off during the day. It's not vertigo (spinning) but a feeling of giddiness.
At the same time this dizziness started, I also felt a weird weak feeling, especially if walking anywhere. My legs would feel like jelly. I've had pins and needles in my hands and feet on and off for a few years, and didn't think anything of it.
In the last few months the pins and needles have increased and are there all the time now. They wax and wane with intensity and can go up my calves but usually mainly feet and hands. My arms are also weak and aching all the time now.
I get sharp stabbing pains in my legs sometimes and my arms. I've also had some tingling in my lips and side of face which has never happened before. This started a few weeks ago.
My doc ordered lots of different blood tests back in Sep/Oct- all normal. He referred me to a neurologist who I saw a couple of weeks ago. Five minutes into the appointment after I described my symptoms, the neuro said it was most likely my circulation. She said the only thing not tested for was cholesterol.
I mentioned that I'd had a free health check about 2 years ago and that had been fine then. Then she did the reflex tests. All were fine except the tandem gait test, which I wobbled badly with. She had to support my arm as I tried to walk. She discharged me.
As I thought I had nothing to lose, as she was discharging me, I thought I'd mention 'ms', to which she said, it most definitely wasn't ms, she could assure me of that. I've chased up my doc for her report, but not through yet. Will wait til New Year now.
The weak jelly legs I've had on and off for about two years, as well as the pins and needles, but the dizziness and feeling weak and 'out of sorts' has only happened since July. I've never had dizziness before.
The neuro said I had BPPV, but I don't feel like I have that?? Any suggestions of what I can chase up with my doc would be most appreciated. Many thanks in advance.
Many of our friends here have difficulty reading large blocks of text. We try to break things up in order to facilitate better response. I have taken the liberty of breaking up you original post...
Kyle
Hi. I've been reading the posts on this forum for a while and you seem such a friendly helpful group of guys, that I thought I'd post a question for some advice please.
Back in July I started to get a very slight dizziness that would last a few minutes. This happened a few times. Then one morning as I sat watching the telly a severe wave of dizziness came on me and I went to bed and slept for a few hours and felt ok.
A few weeks after this, I had the same thing happen. I woke up feeling normal and as I got out of bed the dizziness hit me very severely. My legs were wobbly and I could hardly walk.
After this second attack, it didn't really go away. It was quite bad for about two weeks and my head felt woolly but I get it every day now, on and off during the day. It's not vertigo (spinning) but a feeling of giddiness.
At the same time this dizziness started, I also felt a weird weak feeling, especially if walking anywhere. My legs would feel like jelly. I've had pins and needles in my hands and feet on and off for a few years, and didn't think anything of it.
In the last few months the pins and needles have increased and are there all the time now. They wax and wane with intensity and can go up my calves but usually mainly feet and hands. My arms are also weak and aching all the time now.
I get sharp stabbing pains in my legs sometimes and my arms. I've also had some tingling in my lips and side of face which has never happened before. This started a few weeks ago.
My doc ordered lots of different blood tests back in Sep/Oct- all normal. He referred me to a neurologist who I saw a couple of weeks ago. Five minutes into the appointment after I described my symptoms, the neuro said it was most likely my circulation. She said the only thing not tested for was cholesterol.
I mentioned that I'd had a free health check about 2 years ago and that had been fine then. Then she did the reflex tests. All were fine except the tandem gait test, which I wobbled badly with. She had to support my arm as I tried to walk. She discharged me.
As I thought I had nothing to lose, as she was discharging me, I thought I'd mention 'ms', to which she said, it most definitely wasn't ms, she could assure me of that. I've chased up my doc for her report, but not through yet. Will wait til New Year now.
The weak jelly legs I've had on and off for about two years, as well as the pins and needles, but the dizziness and feeling weak and 'out of sorts' has only happened since July. I've never had dizziness before.
The neuro said I had BPPV, but I don't feel like I have that?? Any suggestions of what I can chase up with my doc would be most appreciated. Many thanks in advance.
If you're having spells of sudden difference in equilibrium, I am wondering if your blood glucose level should perhaps be followed, in addition to your a1c. The a1c is a good average, measured over time. The "momentary" blood glucose (i.e., finger stick) will tell if there might be spikes or dips that could be causing a problem. Just a thought; like everyone else here, I'm no doc. I don't even play one on TV! ;-)
Mom's Meniere's varies, sometimes just unsteady, sometimes more.
My fingertips/toes don't always turn the deep purply or white on end. Like most things, varies according to person and or disease state.
My skin in general, especially my legs and arms have a purply/red mottled tone to them oftentimes. It actually is called Livedo Reticularis. In my case it is part of the Lupus.
Mom's regular blood glucose test didn't show diabetes. But her Dr did the specialized A1C and it was high, so may be a good idea if you can get that, too. It is also done with a blood draw.
Have you had your ANA levels checked? Auto-Immune diseases can be hard to pinpoint and diagnose.
Again, just brainstorming here..heavy on the "storm"..lol
Good deal you're following up with your Dr in the new year, too. It's just reassuring to know what is going on, if you can..I know it can be frustrating trying to get it all figured out..Hang in there!
C
My fingertips/toes don't always turn the deep purply or white on end. Like most things, varies according to person and or disease state.
My skin in general, especially my legs and arms have a purply/red mottled tone to them oftentimes. It actually is called Livedo Reticularis. In my case it is part of the Lupus.
Mom's regular blood glucose test didn't show diabetes. But her Dr did the specialized A1C and it was high, so may be a good idea if you can get that, too. It is also done with a blood draw.
Have you had your ANA levels checked? Auto-Immune diseases can be hard to pinpoint and diagnose.
Again, just brainstorming here..heavy on the "storm"..lol
Good deal you're following up with your Dr in the new year, too. It's just reassuring to know what is going on, if you can..I know it can be frustrating trying to get it all figured out..Hang in there!
C
Thank you for your reply. Most appreciated. :) The first blood test was for all the usual things like diabetes, anaemia, thyroid, fbc, etc. They were all fine. Then the doc said I needed more specialised blood test. They were fine too. I've not had an EMG/NCV test, only those reflex tests. I suppose if it is my circulation, my doc will be able to establish this quite easily. I suffer with terribly cold hands and feet. My husband goes mad if I accidentally touch him in bed when they're really cold. I've noticed on many of the ms forums, that cold hands and feet are common with ms sufferers?? I looked up Raynaud's and the pics show white finger tips, which I never have. I don't have vertigo or tinnitus. My dizziness is not spinning, but a feeling of unsteadiness. Not sure if this kind of dizziness is part of Meniere's??? When I see the doc in the new year, I'll ask him to check me for BPPV. Apparently there's a manoeuvre he can perform that would induce the dizziness and 'prove' I had that, but again, from what I've read of BPPV, my dizziness doesn't sound like that?? I will ask for a second opinion if things don't improve and my cholesterol and circulation come back ok. Many thanks again Calamfred. :)
First off, the people who are "regulars" here on MS Forum, and knowledgeable will be along to reply soon, I am sure. Helpful nice people here on Med help!
My hubby has MS. I have Lupus and IC.
Meantime, a few thoughts:
I am guessing your blood sugar levels have been tested? The A1C test is especially helpful, as it gives an "average" over prior 2-3 months time frame. Blood sugar levels being "off" either high or low can cause many of the symptoms you describe.
What about EMG/NCV testing to check your nerve responses?
As far as circulation, I have issues with that due to Raynaud's that goes along with Lupus in my case. But I have extremely cold feet and hands, when the rest of me can be as warm as toast...I didn't see you mention issues such as that...
My mom has Meniere's disease, it can cause severe vertigo among other symptoms. With Mom's 1st onset of it, it was initially thought she had a Stroke, so it's important to get correct diagnosis.
Can you get a 2nd opinion? No matter what is going on, it sounds like something is not right. And while I have utmost respect for Drs, I feel we know our own bodies best. And sometimes it's a matter of finding the right "fit" between a patient and Dr.
Take care, and hope things improve for you soon.
C
My hubby has MS. I have Lupus and IC.
Meantime, a few thoughts:
I am guessing your blood sugar levels have been tested? The A1C test is especially helpful, as it gives an "average" over prior 2-3 months time frame. Blood sugar levels being "off" either high or low can cause many of the symptoms you describe.
What about EMG/NCV testing to check your nerve responses?
As far as circulation, I have issues with that due to Raynaud's that goes along with Lupus in my case. But I have extremely cold feet and hands, when the rest of me can be as warm as toast...I didn't see you mention issues such as that...
My mom has Meniere's disease, it can cause severe vertigo among other symptoms. With Mom's 1st onset of it, it was initially thought she had a Stroke, so it's important to get correct diagnosis.
Can you get a 2nd opinion? No matter what is going on, it sounds like something is not right. And while I have utmost respect for Drs, I feel we know our own bodies best. And sometimes it's a matter of finding the right "fit" between a patient and Dr.
Take care, and hope things improve for you soon.
C
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