Multiple Sclerosis (MS) Support Group
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I was diagnosed with Meniere's Disease last year after two years of health problems and a huge list of symptoms but I'm now pushing my doctor for an MRI as I wonder if my issue with MS. From what I've read my doctor should have done an MRI to rule out MS before diagnosing Meniere's anyways, but also a lot of my symptoms do no fit the profile of Meniere's but I was told they are separate issues. I have asked for an MRI before and my doctor declined, saying the CT scan I had was all that was necessary.
My doctor will not take the time to discuss all my symptoms with me as "there are just too many and he doesn't have time". He asks what is the most troublesome which is typically the attacks of vertigo I have so that is the only problem that gets addressed.
Just wondering if anyone can offer advice, if I should be concerned and push further? I wonder if it's possible that it is MS, but then I feel like a hypochondriac, I've already switched doctors twice and have been dealing with this for 2 years. I'm a 29 year old female, and my husband and I want to start a family soon but need to get to the bottom of my health issues before we do that.
My symptoms are as follows:
-Dizziness, which varies day to day, Some days is disabling and the room spins.Often accompanied by uncontrollable vomiting and unable to walk.
-Lump in throat: Dr dismissed this as anxiety, but I think it's caused by when I vomit very hard as it often seems to follow bouts of violent vomiting,
-Shakiness, even when not feeling particularly dizzy still feeling shaky and unsure of my steps when I walk.
-Minor hearing loss in low tones in right ear which I have had since I had tubes put in my ears at 14.
-Minor ringing in my right ear, again since I had inner ear issues and tubes at 14.
-Numbness in feet and lower legs(with and without Renaud's, sometimes my toes turn white, other times they feel numb but are not white)
-Feeling that occurs only in right leg, between knee and thigh which feels like a crawling sensation. I would describe it as it's almost like I can feel the blood moving through. It's very annoying and often makes me move my leg restlessly.
-Pain in feet and legs, I was referred to a podiatrist for the foot and leg issues and my doctor pretty much just refuses to discuss it further now. I've seen two podiatrists, wear my prescribed orthopedics all the time and still have issues. At time I have trouble walking due to it, although it was worst in January-July of 2013 and has not been that bad since. At that time I was not walking much as it hurt a lot. Now I have a desk job so I don't walk much and it's more of just a nuisance now.
-Brain fog: completely unable to remember anything some days. I am better off calling in sick when it's bad because trying to work through it I usually screw things up worse than if I had done nothing at all. My memory is just awful at times.
Confusion: for example, I recently forgot how to get to my aunt's house, where she has lived, in the same city as me since I was 5. I've driven there many, many times before but for the life of me could not remember how to get there.
-Chest pain - I get pains in my upper chest area, more so on the right side. Feels constricted, I often try to take deep, slow breaths to "push it out".
-Urge to pee all the time. To the point where I will take routes that have bathrooms along the way even for short drives. Driving to our cabin an hour away we always need to make at least one bathroom stop for me.
-Digestive issues: for most of 2013 and 2014 I had issues with my food passing through my undigested, would either be constipated or have diarrhea. Had a GI scope and it showed normal. Digestion has mostly normalized now, still constipated a lot but not nearly as severe as before.
-Severe fatigue: Some days taking a shower and emptying the dishwasher are a big achievement for me. Other times I will feel fine then BAM it will hit later int he day and all I can do is lie on the couch and fall asleep.
My doctor writes most of the symptoms off to anxiety, however I have taken anti-anxiety medications for months with no change in the physical symptoms, I do not currently feel anxious and have seen a therapist for anxiety and was told I did not need to continue with therapy as her assessment was that I scored low on the anxiety scale and she did not believe it to be an issue for me anymore, In the past anxiety was an issue for me, but currently it's not.
I'm at my wits end. I am on a low sodium diet as it is supposed to help with Meniere's with not much luck. At first I was glad when they diagnosed me because I just wanted somebody to tell me what was wrong, but now I'm not sure if this is actually my issue.. I feel like a hypochondriac and am not sure what else to do to get answers. I already had to give up the job I loved and work from home now. I've been tested for Lyme Disease and it was negative. I don't know what else it could be.
My doctor will not take the time to discuss all my symptoms with me as "there are just too many and he doesn't have time". He asks what is the most troublesome which is typically the attacks of vertigo I have so that is the only problem that gets addressed.
Just wondering if anyone can offer advice, if I should be concerned and push further? I wonder if it's possible that it is MS, but then I feel like a hypochondriac, I've already switched doctors twice and have been dealing with this for 2 years. I'm a 29 year old female, and my husband and I want to start a family soon but need to get to the bottom of my health issues before we do that.
My symptoms are as follows:
-Dizziness, which varies day to day, Some days is disabling and the room spins.Often accompanied by uncontrollable vomiting and unable to walk.
-Lump in throat: Dr dismissed this as anxiety, but I think it's caused by when I vomit very hard as it often seems to follow bouts of violent vomiting,
-Shakiness, even when not feeling particularly dizzy still feeling shaky and unsure of my steps when I walk.
-Minor hearing loss in low tones in right ear which I have had since I had tubes put in my ears at 14.
-Minor ringing in my right ear, again since I had inner ear issues and tubes at 14.
-Numbness in feet and lower legs(with and without Renaud's, sometimes my toes turn white, other times they feel numb but are not white)
-Feeling that occurs only in right leg, between knee and thigh which feels like a crawling sensation. I would describe it as it's almost like I can feel the blood moving through. It's very annoying and often makes me move my leg restlessly.
-Pain in feet and legs, I was referred to a podiatrist for the foot and leg issues and my doctor pretty much just refuses to discuss it further now. I've seen two podiatrists, wear my prescribed orthopedics all the time and still have issues. At time I have trouble walking due to it, although it was worst in January-July of 2013 and has not been that bad since. At that time I was not walking much as it hurt a lot. Now I have a desk job so I don't walk much and it's more of just a nuisance now.
-Brain fog: completely unable to remember anything some days. I am better off calling in sick when it's bad because trying to work through it I usually screw things up worse than if I had done nothing at all. My memory is just awful at times.
Confusion: for example, I recently forgot how to get to my aunt's house, where she has lived, in the same city as me since I was 5. I've driven there many, many times before but for the life of me could not remember how to get there.
-Chest pain - I get pains in my upper chest area, more so on the right side. Feels constricted, I often try to take deep, slow breaths to "push it out".
-Urge to pee all the time. To the point where I will take routes that have bathrooms along the way even for short drives. Driving to our cabin an hour away we always need to make at least one bathroom stop for me.
-Digestive issues: for most of 2013 and 2014 I had issues with my food passing through my undigested, would either be constipated or have diarrhea. Had a GI scope and it showed normal. Digestion has mostly normalized now, still constipated a lot but not nearly as severe as before.
-Severe fatigue: Some days taking a shower and emptying the dishwasher are a big achievement for me. Other times I will feel fine then BAM it will hit later int he day and all I can do is lie on the couch and fall asleep.
My doctor writes most of the symptoms off to anxiety, however I have taken anti-anxiety medications for months with no change in the physical symptoms, I do not currently feel anxious and have seen a therapist for anxiety and was told I did not need to continue with therapy as her assessment was that I scored low on the anxiety scale and she did not believe it to be an issue for me anymore, In the past anxiety was an issue for me, but currently it's not.
I'm at my wits end. I am on a low sodium diet as it is supposed to help with Meniere's with not much luck. At first I was glad when they diagnosed me because I just wanted somebody to tell me what was wrong, but now I'm not sure if this is actually my issue.. I feel like a hypochondriac and am not sure what else to do to get answers. I already had to give up the job I loved and work from home now. I've been tested for Lyme Disease and it was negative. I don't know what else it could be.
as it really narrows the possibilities down. They will need to make sure you do not have a brain tumor and find out if you have MS which is one of just a few other diseases that can cause this.
Hope you get into a neuro ASAP,
EP
Many things that you bring up here, sound like MS to me. I have had it for more that 30yrs. The way that I was finally diagnosed was via an MRI.
Don't like the sound of your doctor, mine has more patient skills.
The brain fog was what took me out of the work force. Had a job that I liked, over time realized that I just could not do it anymore.
Ever heard of CCSVI?
stay strong and look fir the answers you need.
I feel so very sorry for you and all that you are dealing with right now, those symptoms sound awful!
From what I now know MS can be very hard to diagnose especially when there are other problems present, or if you dont get a good neurologist who knows what to look for exactly.
I read your post with interest as my symptoms started out appearing as an ear infection, balance, dizziness and vertigo, nausea and tinnitus. I was at the ENT specialist three times, totally convinced I had Menieres disease until I got a referral to a specialist at the hospital who saw my walking was so bad, did a detailed health history and said it was not Menieres but more likely MS.
Ive recently been in hospital for 8 days having extensive testing, but only because this specialist picked this up and I lost the use of my legs very fast. They did find some lesions on my spine and some in my brain, but they didnt do a contrast MRI and my notes say 'requires further investigation'. My primary care doctor is also not too helpful, he puts down my vision, bladder, swallowing issues to 'just anxiety', it wasnt until I joined support groups such as this that I found out that many people are struggling with these symptoms and I had one sympathetic therapist at the hospital explain to me that where my lesions were sitting could cause all sorts of 'vestibular disorders' (hence the suspected Menieres disease).
I think its very important that you convince someone somewhere to arrange for MRI's to be done with contrast to see whats going on in brain and spine. So much of diagnosing MS seems to be eliminating other similar diseases, so its good you got tested for Lymes. I went through all this too, until the specialist said 'its either a very rare form of Cancer or MS' and they just eliminated the Cancer.
Im still in the process of getting a doctor to actually clarify with me that its probably the Progressive form as I dont have the inflammation and the disability progressed so fast without remittance. They tell me they need to observe my progress a bit longer before a written diagnosis, I'm waiting on more appointments and hoping that someone will agree to do another MRI with contrast.
Good luck to you and keep strong and don't give up! get information from the MS society and from support groups like this (saved my sanity).