Aa
Long Road to a Diagnosis...
Hi,
I'm new and have not gotten a diagnosis or treatment as of yet with over four years of testing and a nice long list of symptoms.I thought being new this was a good place to start.
1) Dizzieness and imbalance (started this way and progressed fast)
Now 24/7 365 never goes away
2) Neck Pain and stiffness ( came right after the Balance issue )
almost always present ( helps to use neck brace or lean head against
Wall or recliner)
3) Vertigo ( had a couple of Sever boughts with this ) Found out it happens More often with stress and Anxiaty
4) Numbness, Burnning, Tingling, Itching, Cold wet feeling (started in right
thiegh, now in my left thiegh more often )
5) Swollowing ( started with solids now both solids and liquids )
6) Nastagmas ( Both eyes Lsft right and upwards) Hard to walk up stairs.
Looking up is an issue with keeping balance.
7) Loud sounds Affects Balance
8) Fatigue
9) Irratale bowl
10) Deep muscle and Joint pain ( feels like getting stabbed through the
joints ) Happens mostly during sleep, Wakes me up can't go back to
sleep.
11) Muscle spasams ( Happens while at rest, Not painful, Just a Nussence.
12) Sleep Apneiha, Insomnia ( Use C-PAP )
13) Opticnuritus, Dry eye, Blurred and some double vision.( eating big challenge,miss mouth alot,stab face with utenstels ) Hard to read.
14) Cognative issues, thinking ,problem solving,memory,staying on track,speech slurred, trouble finding words and interpitation of hearing words, the mind sometimes dosent hear things correctly, have to ask alot of times what people say to make sure I heard it right. loose track of time and space, where i'm at sometimes, people I just met don't remember who they are or even meeting them.
15) Intetional tremmors ( If I use this term correctly ) Only while useing
hands and arms. Legs tremmor if standing in one spot.
16) Muacle cramping,Legs, calfs toes, arms,Feels as if someone tied an atternakit to my bicepts and arms go cold and numb.
17) Buzzing viberatory feeling from waist to knees.( Not all the time ) Happens only at rest.
18) Vommiting ( too much motion and movement will cause this ) Learned to control this to a point.
19) Loss of sensation of a pin or needle prick from the neck down.
20) Arms and legs weekness, feels like they are made of lead.
21) Dry Mouth, constsntly thirsty ( causes frequint urination )
22) E.D.
23) Inconstance, ( very embarrasing )
I may have missed a few, But I feel like I listed most of them.And some I may have never related them to this condition. I know stress really brings out the symptoms even worse, and heat as well.
I have been to two university hospitals and two differant V.A. hospitals, and a couple of Private practice Neurologists. Tons of tests to rule out alot of other conditions and mimics of MS , but No answers. My MRI's of my brain, I was told the lesions were typical for my age group. The CFS results were dismissed as a tramatic LP and was told that the high level of protine and high red blood cell count were to to this fact of a tramtic LP. I had this done W/ Flurocopy and during the proceedure they did get close to a nerve root but never had to re-stab just corrected the angle and finnished the proceedure.How would that be a tramatic Puncture?
The now Neurologist I'am seeing says, theres no need to test any further, He simply told me It's not MS.
I never had an MRI of the spine done, and wondered why he or any of the other neurologists never had that done. I would really like to have this done before he totaly rules out MS, but I may need to start this whole process over again with a new Doc.But haveing this for so long now and is progressing so fast now, I wonder if it is something else. Especially now that he told me it's not MS and he wouldnt do anymore tests. Im very lost now, more than ever. I really don't want to keep going on like this forever.
I have developed a new problem with all this as well that could be harder to get a diagnosis as well. DVT's, I have gotten two of them during the contrasted portion of the MRI process, I dont know why now I'm haveing this problem, because the very first Contrasted MRI , I never got a Deep veign thrombosis. But the last two done at the V.A. hospital I got a DVT each time. I thought they were caused either by the solution that was used and I had a reaction to it or because when the tech tried to adminiter the contrast solution she went through the vein and shot the solution under the skin,at the elbow and had the other tech do it . she did the same thing at first but when she realized that she didnt get into the vein she raimed the needle into the vein at the wrist.
The next day I had a big sore bulge in my arm between these two injection sites and called the emergancy room at our local hospital, Ultra sound was done and a confirmed DVT was found. Mind you that was the first DVT and the second one she did almost the same thing but only one injection site but was injecting it under the skin and not into the vein at first,she reaimed the needle and finnished the injection and of course I had a new DVT also found with an ultrasound. But this third one I just got in my calf and behind the knee I never even had the contrast solution shot in me, just did it by it's self. Can MS cause DVT's ? I had a Heymatologist test me for these clotts and was told that everything was within normal limmits.
I was also told that now that I'm on warfrain, That I can't have another MRI done, can anyone explain that? I never heard of an MRI reacting with the warfrain. And I know if I do get a new doc the first thing he will want to do is MRI's. is it because I have a reaction to the contrast solution or simply I now have a history with getting the DVT's.?
I'm new and have not gotten a diagnosis or treatment as of yet with over four years of testing and a nice long list of symptoms.I thought being new this was a good place to start.
1) Dizzieness and imbalance (started this way and progressed fast)
Now 24/7 365 never goes away
2) Neck Pain and stiffness ( came right after the Balance issue )
almost always present ( helps to use neck brace or lean head against
Wall or recliner)
3) Vertigo ( had a couple of Sever boughts with this ) Found out it happens More often with stress and Anxiaty
4) Numbness, Burnning, Tingling, Itching, Cold wet feeling (started in right
thiegh, now in my left thiegh more often )
5) Swollowing ( started with solids now both solids and liquids )
6) Nastagmas ( Both eyes Lsft right and upwards) Hard to walk up stairs.
Looking up is an issue with keeping balance.
7) Loud sounds Affects Balance
8) Fatigue
9) Irratale bowl
10) Deep muscle and Joint pain ( feels like getting stabbed through the
joints ) Happens mostly during sleep, Wakes me up can't go back to
sleep.
11) Muscle spasams ( Happens while at rest, Not painful, Just a Nussence.
12) Sleep Apneiha, Insomnia ( Use C-PAP )
13) Opticnuritus, Dry eye, Blurred and some double vision.( eating big challenge,miss mouth alot,stab face with utenstels ) Hard to read.
14) Cognative issues, thinking ,problem solving,memory,staying on track,speech slurred, trouble finding words and interpitation of hearing words, the mind sometimes dosent hear things correctly, have to ask alot of times what people say to make sure I heard it right. loose track of time and space, where i'm at sometimes, people I just met don't remember who they are or even meeting them.
15) Intetional tremmors ( If I use this term correctly ) Only while useing
hands and arms. Legs tremmor if standing in one spot.
16) Muacle cramping,Legs, calfs toes, arms,Feels as if someone tied an atternakit to my bicepts and arms go cold and numb.
17) Buzzing viberatory feeling from waist to knees.( Not all the time ) Happens only at rest.
18) Vommiting ( too much motion and movement will cause this ) Learned to control this to a point.
19) Loss of sensation of a pin or needle prick from the neck down.
20) Arms and legs weekness, feels like they are made of lead.
21) Dry Mouth, constsntly thirsty ( causes frequint urination )
22) E.D.
23) Inconstance, ( very embarrasing )
I may have missed a few, But I feel like I listed most of them.And some I may have never related them to this condition. I know stress really brings out the symptoms even worse, and heat as well.
I have been to two university hospitals and two differant V.A. hospitals, and a couple of Private practice Neurologists. Tons of tests to rule out alot of other conditions and mimics of MS , but No answers. My MRI's of my brain, I was told the lesions were typical for my age group. The CFS results were dismissed as a tramatic LP and was told that the high level of protine and high red blood cell count were to to this fact of a tramtic LP. I had this done W/ Flurocopy and during the proceedure they did get close to a nerve root but never had to re-stab just corrected the angle and finnished the proceedure.How would that be a tramatic Puncture?
The now Neurologist I'am seeing says, theres no need to test any further, He simply told me It's not MS.
I never had an MRI of the spine done, and wondered why he or any of the other neurologists never had that done. I would really like to have this done before he totaly rules out MS, but I may need to start this whole process over again with a new Doc.But haveing this for so long now and is progressing so fast now, I wonder if it is something else. Especially now that he told me it's not MS and he wouldnt do anymore tests. Im very lost now, more than ever. I really don't want to keep going on like this forever.
I have developed a new problem with all this as well that could be harder to get a diagnosis as well. DVT's, I have gotten two of them during the contrasted portion of the MRI process, I dont know why now I'm haveing this problem, because the very first Contrasted MRI , I never got a Deep veign thrombosis. But the last two done at the V.A. hospital I got a DVT each time. I thought they were caused either by the solution that was used and I had a reaction to it or because when the tech tried to adminiter the contrast solution she went through the vein and shot the solution under the skin,at the elbow and had the other tech do it . she did the same thing at first but when she realized that she didnt get into the vein she raimed the needle into the vein at the wrist.
The next day I had a big sore bulge in my arm between these two injection sites and called the emergancy room at our local hospital, Ultra sound was done and a confirmed DVT was found. Mind you that was the first DVT and the second one she did almost the same thing but only one injection site but was injecting it under the skin and not into the vein at first,she reaimed the needle and finnished the injection and of course I had a new DVT also found with an ultrasound. But this third one I just got in my calf and behind the knee I never even had the contrast solution shot in me, just did it by it's self. Can MS cause DVT's ? I had a Heymatologist test me for these clotts and was told that everything was within normal limmits.
I was also told that now that I'm on warfrain, That I can't have another MRI done, can anyone explain that? I never heard of an MRI reacting with the warfrain. And I know if I do get a new doc the first thing he will want to do is MRI's. is it because I have a reaction to the contrast solution or simply I now have a history with getting the DVT's.?
Ataxia,
Hummm, I was checked for Gluten ataxia and ataxia type 2 both neg.
These tests alone were about 2 grand, there are approx 15 to 20 types of ataxia and very expensive to have done.I was told to have them all tested for would be around 7 to 10 k from my pocket alone.
Hummm, I was checked for Gluten ataxia and ataxia type 2 both neg.
These tests alone were about 2 grand, there are approx 15 to 20 types of ataxia and very expensive to have done.I was told to have them all tested for would be around 7 to 10 k from my pocket alone.
I'm not trying to scare you, but please check for Lyme through the Igenex labs in California! It could all be psychosomatic (the brain can do anything) but it could also be Lyme ;P It's pretty hard to get a diagnosis, so look for an LLMD in your area. Lyme can require years on antibiotics, but it's pretty curable and if you have Lyme it sounds like you have a pretty good immune system (checkhttp://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html) You could also have aspertame poisoning - although this sounds scary it only requires cutting out "sugar-free" foods from your diet and cutting out fizzy drinks. ! Check out conversion disorder. I presume you've had your B12 and thyroid checked? And finally, check for Arnold–Chiari malformation!!!! It can cause vertigo, tingling, nystagmus....most of the symptoms you listed. It's hard for most doctors (especially neurologists) to pick up on an MRI, as they are often looking for lesions and miss other, crucial things.
Good luck!
Good luck!
Very sorry to hear you are in such a state.
As the Neuro has said it's not MS, there are a few alternative diagnoses you could investigate. The first is Sjogren's syndrome as this has some similar symptoms and does have the dry mouth etc.
Another would be the ataxia family. There many different types of ataxia, each with its own set of symptoms. Although there is genetic testing for that condition, I don't think it picks up all the variations, but it might be somewhere to start.
Another condition to look into would be the neurological celiac disease. Some people have Celiac all their lives, only ever having neurological symptoms. A friend of mine has the same symptoms as you but hers started as Celiac disease, morphed into gluten ataxia and now Ramsay-Hunt syndrome is looking like a possibility.
I truly hope you get to the bottom of what is causing your symptoms.
Best wishes
Poppy
As the Neuro has said it's not MS, there are a few alternative diagnoses you could investigate. The first is Sjogren's syndrome as this has some similar symptoms and does have the dry mouth etc.
Another would be the ataxia family. There many different types of ataxia, each with its own set of symptoms. Although there is genetic testing for that condition, I don't think it picks up all the variations, but it might be somewhere to start.
Another condition to look into would be the neurological celiac disease. Some people have Celiac all their lives, only ever having neurological symptoms. A friend of mine has the same symptoms as you but hers started as Celiac disease, morphed into gluten ataxia and now Ramsay-Hunt syndrome is looking like a possibility.
I truly hope you get to the bottom of what is causing your symptoms.
Best wishes
Poppy
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