Aa
Been in limboland for five years
Hi folks
I have been in Limboland for five long years now. First started with funny vision in my right eye, which recovered, then numbness in left side of face and tongue, then numbness in left hand. Had a quiet few years though symptoms never fully went away. Now have burning pains, twitching muscles, feeling as though my joints in my left side are not really there, blurry vision for four weeks in April, lack of sensation in various parts intermittently, back pain, stiffness and a few others.
Have recently started Gabapentin, came off Amitriptyline recently. Had relapse in December and had to take two weeks of work for the first time, my left side went all strange.
MRI of brain and lumbar spine clear for lesions though had schmorl nodes, foraminal stenosis and facet atropy (mild) in lumbar spine. LP clear.
Seeing my neuro again next month but unsure where to go next, he has refused to do evoked potentials or nerve conduction studies - which i think i should have.
I have been in Limboland for five long years now. First started with funny vision in my right eye, which recovered, then numbness in left side of face and tongue, then numbness in left hand. Had a quiet few years though symptoms never fully went away. Now have burning pains, twitching muscles, feeling as though my joints in my left side are not really there, blurry vision for four weeks in April, lack of sensation in various parts intermittently, back pain, stiffness and a few others.
Have recently started Gabapentin, came off Amitriptyline recently. Had relapse in December and had to take two weeks of work for the first time, my left side went all strange.
MRI of brain and lumbar spine clear for lesions though had schmorl nodes, foraminal stenosis and facet atropy (mild) in lumbar spine. LP clear.
Seeing my neuro again next month but unsure where to go next, he has refused to do evoked potentials or nerve conduction studies - which i think i should have.
Hi gheko
Good to meet you and yet sorry to read you've been going through the same sort of stuff as most of us here. I'm in UK and have the same 5 year's worth of being 'blown off' as our American cousins put it. Very similar sx to yours.
What are schmorl nodes? foraminal stenosis and facet atropy (mild) in lumbar spine also sound like they might be causal. Not that I know anything about it, mind you! But it stands to reason that blocked canals and degenerating bone might just have a wee bit to do with dysfunctional nerves!
So I feel for you...it's a real mess to live with, isn't it? Have you thought of going private for the tests that could at least eliminate some conditions?
samx
Good to meet you and yet sorry to read you've been going through the same sort of stuff as most of us here. I'm in UK and have the same 5 year's worth of being 'blown off' as our American cousins put it. Very similar sx to yours.
What are schmorl nodes? foraminal stenosis and facet atropy (mild) in lumbar spine also sound like they might be causal. Not that I know anything about it, mind you! But it stands to reason that blocked canals and degenerating bone might just have a wee bit to do with dysfunctional nerves!
So I feel for you...it's a real mess to live with, isn't it? Have you thought of going private for the tests that could at least eliminate some conditions?
samx
Hi and welcome to the forum.
I am surprised that as you had problems with your eyes at the start that you neuro hasnt done a vep test. (When you see him remind him of this ok).
About 9 years ago I was in Brazil and lost the sight in my left eye, it was only for a minute but it freaked me out, this happened again when I was in the UK. The doctor at the time said it could have just been a bit of low blood pressure but I hasten to add did not check my BP or my eyes. I told my neuro about this and he said I needed the VEP test to see if anything was going on at the time.
Anyway I did have a VEP as part of my tests and they came back POSITIVE for BILATERAL OPTICAL NEURITIS I could have kissed him to have a POSITIVE tests was wonderful believe me LOL.
Although this does not mean I have MS it could be an indicator of other diseases as well.
The nerve conduction test is to eliminate peripheral nueropathy and nerve damage. Perhaps for now he doesnt think you have any nerve damage?
I had this procedure and it was negative for nerve damage BUT then my neurologist said it doesnt mean nerves are not damaged as it cannot detect damage in very fine nerves so it makes me wonder sometimes why bother having the tests.
I believe that Neural Foraminal Stenosis can give you the following symptoms:
Pain
Tingling
Numbness
Weakness
COULD some of your symptoms be attributed to this? I am not sure if you Neural or just Foraminal (spine).
My neurologist told me that any sensory problems in your face is caused in the main by CNS problems.
I had schmorl nodes on my MRI as well.
Its very difficult to advise you really, as I went for a second opinion and wished I hadnt, as I realised that how could someone tell me in 20 minutes what another person has not been able to tell me in 3 years if you understand me.
I am having another MRI next week of neck and spine. IF they are clear of lesions then i have decided to quit the medical trail.
Do you find the gabapentin helps your symptoms?
You said you had a relapse in December what form did it take?
Your symptoms sound like a CNS problems to me especially with numbness.
Like Theresa has said you might want to see a Rheumatologist too.
There is one thing i would say, in the UK unless you are CLASSIC symptoms and test results you will never get a diagnosis of MS I am sure of it. This MacDonald criteria has made it harder and harder to give out a diagnosis.
On another forum there is a poster who was told she had PPMS 12 years ago, and they have now told her they dont think she has as her MRI was clear.
YET I was told by my uncle who is a radiologist in Italy that PPMS lesions dont always show up.
I would advise you to keep a very in depth diary for now so that when you see your neuro you can tell him how and when things seem to flare.
You then need to ask him well if it isnt MS then what is it? He cant just leave you without any ideas. Then you could ask to see another neuro.
Its all very difficult really, as we just want answers and to get well again, I mean how hard is that for goodness sake.
I truly feel for you honestly.
Big hugs Mariaxxx
I am surprised that as you had problems with your eyes at the start that you neuro hasnt done a vep test. (When you see him remind him of this ok).
About 9 years ago I was in Brazil and lost the sight in my left eye, it was only for a minute but it freaked me out, this happened again when I was in the UK. The doctor at the time said it could have just been a bit of low blood pressure but I hasten to add did not check my BP or my eyes. I told my neuro about this and he said I needed the VEP test to see if anything was going on at the time.
Anyway I did have a VEP as part of my tests and they came back POSITIVE for BILATERAL OPTICAL NEURITIS I could have kissed him to have a POSITIVE tests was wonderful believe me LOL.
Although this does not mean I have MS it could be an indicator of other diseases as well.
The nerve conduction test is to eliminate peripheral nueropathy and nerve damage. Perhaps for now he doesnt think you have any nerve damage?
I had this procedure and it was negative for nerve damage BUT then my neurologist said it doesnt mean nerves are not damaged as it cannot detect damage in very fine nerves so it makes me wonder sometimes why bother having the tests.
I believe that Neural Foraminal Stenosis can give you the following symptoms:
Pain
Tingling
Numbness
Weakness
COULD some of your symptoms be attributed to this? I am not sure if you Neural or just Foraminal (spine).
My neurologist told me that any sensory problems in your face is caused in the main by CNS problems.
I had schmorl nodes on my MRI as well.
Its very difficult to advise you really, as I went for a second opinion and wished I hadnt, as I realised that how could someone tell me in 20 minutes what another person has not been able to tell me in 3 years if you understand me.
I am having another MRI next week of neck and spine. IF they are clear of lesions then i have decided to quit the medical trail.
Do you find the gabapentin helps your symptoms?
You said you had a relapse in December what form did it take?
Your symptoms sound like a CNS problems to me especially with numbness.
Like Theresa has said you might want to see a Rheumatologist too.
There is one thing i would say, in the UK unless you are CLASSIC symptoms and test results you will never get a diagnosis of MS I am sure of it. This MacDonald criteria has made it harder and harder to give out a diagnosis.
On another forum there is a poster who was told she had PPMS 12 years ago, and they have now told her they dont think she has as her MRI was clear.
YET I was told by my uncle who is a radiologist in Italy that PPMS lesions dont always show up.
I would advise you to keep a very in depth diary for now so that when you see your neuro you can tell him how and when things seem to flare.
You then need to ask him well if it isnt MS then what is it? He cant just leave you without any ideas. Then you could ask to see another neuro.
Its all very difficult really, as we just want answers and to get well again, I mean how hard is that for goodness sake.
I truly feel for you honestly.
Big hugs Mariaxxx
Hi,
Welcome. I am in limbo but it has only been since August 2009.. I am not dx. with anything yet but my last appt. with neuro brought up the discussion of MS so I am going through more tests and MRI's. I do show lesions on MRI. I have had an EMG which was mormal and Lyme's test was negative. but that has ben it so far. I am not on any meds. I have had numbness and tingling, weakness in arm and leg with cramping all on left side since August. I have also had shocklike sensations down my leg and arm that come and go and get very fatigued if I overexert myself...just to name a few.
As I said I am a ewbie so don't have much experience in limboland but this forum is wonderful with alot of individuals who have had a lot of experiences of their own and some great advice! I think this forum will help you alot! It helped me tons!
Be Well
Jib Jen
Welcome. I am in limbo but it has only been since August 2009.. I am not dx. with anything yet but my last appt. with neuro brought up the discussion of MS so I am going through more tests and MRI's. I do show lesions on MRI. I have had an EMG which was mormal and Lyme's test was negative. but that has ben it so far. I am not on any meds. I have had numbness and tingling, weakness in arm and leg with cramping all on left side since August. I have also had shocklike sensations down my leg and arm that come and go and get very fatigued if I overexert myself...just to name a few.
As I said I am a ewbie so don't have much experience in limboland but this forum is wonderful with alot of individuals who have had a lot of experiences of their own and some great advice! I think this forum will help you alot! It helped me tons!
Be Well
Jib Jen
Hello & Welcome,
Your symptoms are simular to mine. I know how you feel.The numb face and tongue are weird and annoying. I have brain lesions and MS like symptoms.
You need to have Evoked Potentiels done. I had them done and it's pretty easy.Kind of weird but easy. Mine were normal.
I am one who is switching neuros because I just was getting nowhere with him.His follow up skills and wait and see approach were not working anymore. I see the new one tomorrow. She is an MS specialists.
I agree with Kristen it is time to switch neuros.
Also you may want to see a Rheumatologist too.Rheumys tend to look for less obvious causes.
It is very frustrating to know that somthings really wrong and to basically get blown off by doctors. 5 years is too long to go without answers. I am almost at the 1 yr mark and cant imagine being in Limbo that long.
Please Take Care, Theresa
Your symptoms are simular to mine. I know how you feel.The numb face and tongue are weird and annoying. I have brain lesions and MS like symptoms.
You need to have Evoked Potentiels done. I had them done and it's pretty easy.Kind of weird but easy. Mine were normal.
I am one who is switching neuros because I just was getting nowhere with him.His follow up skills and wait and see approach were not working anymore. I see the new one tomorrow. She is an MS specialists.
I agree with Kristen it is time to switch neuros.
Also you may want to see a Rheumatologist too.Rheumys tend to look for less obvious causes.
It is very frustrating to know that somthings really wrong and to basically get blown off by doctors. 5 years is too long to go without answers. I am almost at the 1 yr mark and cant imagine being in Limbo that long.
Please Take Care, Theresa
Welcome. I just started on Gabapentin as well. I am taking it for nerve pain and headaches. I also have a variety of other symptoms as well and am waiting for results to my MRI.
Many of the people here have a lot of experience with neurologists and with having to switch. I have just started with mine and tend to like her so far. If yours is refusing to do tests that you feel are neccesary, have you considered looking elsewhere for another opinion? I know how frustrating this whole process can be and I can imagine after 5 years you are just beyond frustrated!
I think that you will find you are in the right place and I hope that you will find support here.
Kristin
Many of the people here have a lot of experience with neurologists and with having to switch. I have just started with mine and tend to like her so far. If yours is refusing to do tests that you feel are neccesary, have you considered looking elsewhere for another opinion? I know how frustrating this whole process can be and I can imagine after 5 years you are just beyond frustrated!
I think that you will find you are in the right place and I hope that you will find support here.
Kristin
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