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I am SO worried I have MS and I was wondering if anyone can help me as I really think the Doctors are wrong and I am right – They say you know your own body well I am listening to mine.

I know this is a long post but could someone have a read and help me with some opinions thanks :)

I have had various health issues over the past 18 months, light headedness, gastro intestinal problems, throat issues.

I had an MRI done 2 years ago due to light headedness – Result was all clear.

I then felt light headed again 15 months later and then 6 months ago I had a Brain CT scan followed by a Brain MRI all again turned out clear. I had read about MS and asked my Neurologist if I have MS and he said in 95% of MRI’s MS shows if your symptomatic and I was possibly showing some symptoms. After the MRI he was happy it was not MS. I also had a huge range of blood tests CBC,s Immunity tests etc. all of which were clear. He ordered a MRI of my Cervical spine and that showed a bulging disc at C4/5 the report says:

[B][I]Bony alignment and marrow signal are normal C4/5 and C5/6 disc spaces are narrowed.
Broad based disc protrusion is seen alog posterior ad left posterolateral margin of C4/5 disc. Left C4/5 neural foramen appears severely narrowed. Suggest correlation with symptoms and clinical findings. Central canal only shows mild narrowing. right C4/5 neural foramen is midly narrowed.
Medial end of right C56 neural foramen is mildly narrowed. Small annular tear seen at posterior margin C5/6 disc.
Small central disc protrusion noted at C6/7 disc[/I][/B]

The concerning thing was the small finger is not affected by C4/5 issues

A month later I kept waking in the night with the left side of my hand feeling totally numb. As the weeks progressed this got worse, then went away for a few weeks then returned again with intensity. The feeling then started creeping up my arms and then across to my right hand and arm. I started getting tingling and prickly feelings in my fingers and arms. When I would go to bed I also started to get tingling in my feet. I also started to get a feeling of a lump in my throat but no lump was seen or detected by an ENT Dr. he put it down to a phenomenon called “Neuralgia”

This to me all pointed to MS. I had yet another disruption of the bowlels with pain and constipation and so I went back to an Ortho Dr and Neurologist. Because this numbness seemed episodal my Neuro got concerned and said this was all pointing to MS and so ordered more tests again which were:

1) Brainstem evoked Potential
2) Visual evoked potential
3) Somatosensory evoked potential
5) Brain MRI with and without Contrast
6) Cervical Spinal Cord MRI with and without Contrast
7) NCT
8) EMG

Again they all came back normal but the NCT and EMG showed some nerve entrapment and the Neuros report on the NCT/EMG said the following:

[B][I]Prolonged distal motor latencies of left median and left ulnar nerves may suggest proximal root lesions. Mixed nerve study shows that the latency of median nerve is prolonged compared to that of ulnar nerve. This suggests slowing of conduction over the wrist. Therefore, it provides electrophysiological evidence of left sided carpal tunnel syndrome.[/I][/B]

He says the chances of Carpal are about 50% but I dont think it is as I have my arms and legs affected!

The Neurologist again had a meeting with the Senior Radiologist and they both came back and said this is NOT MS as if I was this symptomatic with MS it would be very distinctive on the MRI images and that my Brain and Cervical Spine MRI showed ZERO evidence of any MS, additionally the fact that the Brain Stem tests are normal corroborates the diagnosis – I was told the brain Stem tests are pretty conclusive for MS too.

1 week on and my right leg is weak – it feels like I have exercised my calf muscle and has that weak feeling that you get after you have worked it in the gym. All my muscles feel twitchy and sometimes certain muscles are slightly trembly. Sometimes if I sit on the sofa my right leg feels like it is going to sleep. I am terrified as to what the hell is going on with my body. I am suffering severe feelings of nausea and I am certain these Doctors have it wrong and I do indeed have MS.

I wonder if anyone could give me any thoughts about this please – I am in quite a state

Cheers

Axa
Axa, Im not sure what it is you are looking to hear here. First of all, if you DID have MS, you might be relieved. All of us were when we got diagnosis...MS is both manageable and kind of a relief to hear, when you know it could be so much worse. And not knowing...is always the worst! I wouldnt wish it on you, but by all means, dont "dread" hearing it.

Secondly, looking at your symtoms, you have all the symtoms of MS and then some. Only about 15% of people get diagnosed without having MRI lesions- however, they almost always show up eventually...and sometimes, they dont. You can still be dx based on symtoms and what you DONT have....the LP, the blood work, the other tests were all normal, this is why they do them. To rule out anything else..everything else appears to be ruled out.

Now, let me tell you that my first symptom was waking up and having my left and hand and fingers numb....3 days of this led me to my GP who said CAPRAL tunnel....and an EMG that said probably not. My GP then said PINCHED NERVE and the CT scan said definately not...the MRI for me, was what led me to a Neurologist and seeing the lesions is what led me to finding out that it was PROBABLY MS. The LP and further ruling out of everything else led me to my dx.
Fast forward 4 years. I have no use of my fingers or left hand...and it has spread to my feet and toes (sometimes-- that part is random) but I have MS. Ive had three bouts of Optical Neuritis since my dx- and since being on Rebif for almost 4 years, have most everything under control.

I do have bad days, and fatigue still kicks my butt- but I push it to the limit iwth work and family obligations.....the numbness and tingling are a normal MS symtoms- one which is quite painful at times, mostly bothersome- and not fixable.

I also want you to know that I have compressed spinal symtoms and 3 buldging discs at C3-C4-C5. I was a dancer in my earlier life....I screwd up my back badly...and they also thought that the compressed and bulging discs could have caused me all this pain. 6 years ago, I went for surgery, not MS related (didnt even know about the MS at the time) and guess what? It didnt do a thing for me. THey actually couldnt fix my problems! Ive had years of PT and done everything they told me...its the MS, not the back problems causing my symtoms! We know that for sure now after trying everything..

SO dont be so quick to think the doctor is wrong, but also dont be too quick to get upset about possibly having MS....life does go on. And if you are that skeptical of the doctor you have, you need to change doctors and get another opinion. Find a MS SPecalist, one who can both rule out or dx MS- and see him soon. The sooner you know whats going on, the sooner youll get your life back on track. And the Neurologist you choose will probably become a huge part of your life, so you have to both respect and like him..keep that in mind.

Hang in there and let us know what happens.
Nikki
Thanks for all your help guys

Long post coming...

The biggest problem I have is that I am in a very cool job and I have a beautiful family. If MS is diagnosed then for the particular job that I have then MS is a serious no no and so I will be let go and my specialist career will be ruined :( How will I then provide for my family :(

what is making me scream is the particular Neuro I have seen says she "feels" its not MS as the tests I had would have shown it. Then I hear others say there is no test that can prove it. She was going to do a Lumbar Tap last week but because all of my Evoke Potentials and MRI of the brain came back negative she said if I had MS then it would have shown itself in those tests. The impression I am getting from here is "No it may might not have"

They initially thought Carpal Tunnel Syndrome as the EMG test said..

[B][I]FINDINGS & INTERPRETATION

Sensory study shows prolonged distal sensory latencies of bilateral median nerves.
Motor study shows prolonged distal motor latencies of left median and left ulnar nerves.
Mixed palm-to-wrist peak latencies shows prolonged latency of median nerve.

CONCLUSIONS

Prolonged distal motor latencies of left median and left ulnar nerves may suggest proximal root lesions. Mixed nerve study shows that the latency of median nerve is prolonged compared to that of ulnar nerve. This suggests slowing of conduction over the wrist.
Therefore, it provides electrophysiological evidence of left sided carpal tunnel syndrome.[/I][/B]

Because the Neuro said MS is not really an issue after the MRI and Tests and because I had an abnormality in my EMG and thus read that ALS in most cases mimics MS but shows clean MRI's but abnormal EMG's. I put this to my Neuro and the response was...

[I]ALS tends to give rise to motor symptom instead of sensory symptom. In other words, ALS makes you feel weak rather than making you numb. Remember your initial presenting symptom is numbness? It is not the typical symptom of ALS. ALS causes abnormality in motor system only. Your NCT mainly reports sensory problem.[/I]

I argued the point back via email and said that the EMG DID show Motor problems and again the response was...

[I]Yes, you are right, that's mild motor problem. However, that can be explained by your cervical degenerative problem. Anyway, ALS should not affect sensory system. Therefore, ALS is not on my mind.[/I]

My cervical problem has been described at worst as Mild and thus they cant give me anything definitive as the new Cervical Spine MRI report said

[B][I]Plain and contrast - enhanced MRI study of the cervical spine shows no abnormal signal intensity enhancement along the infra-nor extradural structures.
The cervical intramedullary cord is unenlarged throughout the visualized cranio-cervical junction and upper thoracic intramedullary segments. There are no cystic degenerations signs of calcifications nor mass effect.
Small ventral disc "bulges" are seen at C4-C5 and C6-C7 interspace levels. The annulus Fibrosus is not completely disrupted but suggestive small disc annular tear/fissure formations are noted: central at C4-C5. Left paracentral at C6-C7 interspaces.
Also, minimal if any postero-lateral vertebral end plate sclerosis is seen at the C6-C7, C7-T1, and C5-C6 interspaces with slight neural foraminal encroachments mainly left sided.
The intervertebral disc spaces are fairly homogeneous with no disc narrowing component. "Tendency" to anterolateral osteophytic bony spur " bridging" are seen at the mid-cervical spinal levels
The vertebral bodies perse. lateral masses.laminae.spinous and transverse processes are intact.
The C1- odontoid and accipito-atlas relationships are maintained normal.
The usual cervical spinal curvature is slightly straightened the pre and paraspinal soft tissue structures are unremarkable.

IMPRESSION:

Small sub-ligamentous disc annular tear/fissure formations central at C4-C5, Left Paracentral at C6-C7. Together with minimal degenerative spondylotic sclerosis slightly Encroaching the neural exit foramina at lower cervical interspaces.
NO compression deformity nor spondylolisthesis
NO intramedullary abnormality
Straightened cervical spinal curvature
[/I][/B]

This to me hardly shows signs of something that can cause weak legs, tingling feet/hands/ trembling muscles??? I mean wtf?

When I quizzed her again she said this...

[I]ALS is both a central and a peripheral nerve problem and its symptoms are ascending from feet up. Yours started in the arms. Seems like its more of a mechanical problem to me. At the most, we have cervical nerve impingement that is producing all these symptoms[/I]

I personally disagree as my Cervical issues are "mild"

This is why I am freaking out :(

Anyway sorry its a long post but wanted to fill you in - I hate to be so public with this but I am keen to get opinions. Also thanks for the kind words.

Just for reference my MRI report of the brain is below

[B][I]High resolution MRI study of the brain with axial and sagittal FLAIR, DWL.ADC maps and SWI sequences was performed together with Gd-DTPA contrast

No focal signal abnormality is noted intrinsic to the supra or intratentorial parenchyma even after contrast infusion
The cortical gyri formations are unremarkable.
The cortical-subcortical junction is preserved: centrum ovale is well-formed
The septo-callosal areas are clear
The basal ganglia internal capsule,brainstem,thalamus,midbrain,pons and cerebellum are characterized by normal signal intensities.
DWI reveals no focal areas of restricted diffusion and normal ADC maps. SWI showing no magnetic susceptibility abnormality intrinsic to the brain.
The ventricles are unenlarged with a midline septum pellucidum:Temporal horns are nor dilated appearing symmetrical while the peripheral sulci are within normal limits.
There is no interstitial edema.
The lepto-meningeal spaces reveal no focal abnormal Gd-enhancement
The C-P angles,visualized porous accousticus, internal auditory canal,sella and extrasellar soft tissues structures are clear.
The visualized retro-orbital structures particularly the retro-orbital nerve segments are completely unremarkable. The anterior and posterior compartment of the orbits are well preserved.

IMPRESSION:

No MRI abnormalities intrinsic to the supra or intratentorial brain Parenchyma with no localized mass lesion,sign of acute or chronic ischernic infarction nor hemorrhagic extravasation
No areas of demyelination in this study
Normal appearance of posterior fossa including the C-P angles and skull base
No lepto-meningeal abnormality.
[/I][/B]
Hi all,

First of all again thanks for your continued support in all of this. You guys should be proud at how you have coped and succeeded with good careers. A lot has to be said for that, I raise a glass to you :)

I went to a clinic today called Alpha Neurology here in Staten Island today. they state [I]"Our practice specializes in all aspects of Neurology with a sub-speciality in Multiple Sclerosis, Epilepsy, Stroke, Alzheimers & Parkinsons disease."[/I] I saw the MS/ALS specialist and she was pretty nice.

The place was packed with people and she said our head Dr. Allan Perel, is the director of the Multiple Sclerosis Center at Staten Island University Hospital, that there were in the "New York best Doctors list" for MS Doctors and to just look around I am in an specialist clinic with lots of MS patients and that she sees and treats MS patients and it's her specialty. Basically she claimed they know their sh*t!

We went through all the notes and she looked at all the reports with me and most importantly she sat, talked and listened. After looking at my test results and checking me over etc. she said to just CALM down as in her opinion I do NOT have MS. She said she agrees with Carpal Tunnel diagnosis and the Cervical Spine issues. Also that the 3 Brain MRI's I have had the past 2 years are all excellent and she said above all I almost certainly do not have ALS as that shows itself very early and differently. Even in standard reflex tests ALS can show itself and all my reflexes were normal. Also the EMG I had showed latency and ALS EMG abnormal results give different readings.

She said when she scraped the bottom of my feet my reflexes on the feet were a little less responsive than normal but the response they were giving was correct and anxiety can add to this as well as the back cervical issues. If I had ALS/Motor Neurone damage etc. my reflex responses would have been much different. She said maybe you should have a lower EMG done BUT this is not to check for ALS or MS just to see if the nerves are also a bit pinched. Also out of all the blood tests I've had done and there have been lots! none have checked for Vit B12 so she said that can cause very light tingling that you describe so maybe get a blood test for that done.

She concluded by saying that 3 Neurologists all independent of each other have now told me in their opinion I do NOT have MS and 2 of them are MS Specialists. I have had MRI's that are very, normal, good Evoke tests, clear blood tests, etc. so trust all 3 of them as this is their job. What she was concerned about and said this was not helping as Nikki has said is that my anxiety level is through the ceiling and I must get this addressed.

As I got up to walk out she added that in her opinion I will go away today happy and will believe her opinion but within a day or two anxiety will kick in and I will once again think I have MS.

So I guess now I have to take what she has said

Time will tell....

x
Axa,

I was browsing posts looking for information on c4-5 disk herniation and your post immediately caught my attention because it all sounds so familiar only I started having the symptons 8 years ago. I was so sure it was MS even though I never once mentioned it to anyone, including all the doctors I have seen. Recently my family doc (new to the practice) came right out and called me on my cell and said he didnt think anything was wrong with me. I became an emotional wreck because I know something isn't right so i threw a fit and said I wanted to see a medical neurologist because I thought something was wrong with my nerves. I thought this because my most recent problems have been shaking in my hands and feet. So he made the appointment with the neurollogist for me and I hung up and made an appointmnt with a psychiatrist because I was really beginning to think that maybe it was all in my head.

I've been through it all as you have MRIs of every kind, tons of blood work, etc yet when I got to the neurologist, i failed the emg and nerve conduction tests in my legs. Back to the hospital for more MRIs I went.

I don't have MS - it has been ruled out with a lumbar puncture and two brain MRIs. I am being told that I have a herniated disk in my neck from an injury that took place years ago and it is pressing on my spinal cord. The thing is I don't have neck pain and I don't get headachs. My neck gets stiff but I always put that off as long stressful days at the office. The psychiatrist said my doc was wrong and that I needed to be treated for the pain in my legs. I have severe pain and severe restless leg syndrome which would keep me up all night most of the week. I started taking the meds a few months ago for rls and have been sleeping wonderful. As for the neurologist, he said my problems are all caused from my neck and that I should see a neurosurgeon because I amly only going to get worse.

My question to you or anyone is, did you find out what was wrong with you? does anyone have a C4-C5 disk herniation without the arm and neck pain?

my symptoms are: dizziness, leg pain, muscle spasms in the legs, joint pain, occasional numbness and tingling in face, arms, hand legs and feet, chronic dry eye and I have a blind spot in my right eye sever night sweats and a stiff neck. For the first 4 years I had extreme nausea and diarhea but mostly have that under control today (I was diagnosed with celiac disease but am in denial).

Looking for any Suggestions from anyone.

[QUOTE=Axa;4092178]I am SO worried I have MS and I was wondering if anyone can help me as I really think the Doctors are wrong and I am right – They say you know your own body well I am listening to mine.

I know this is a long post but could someone have a read and help me with some opinions thanks :)

I have had various health issues over the past 18 months, light headedness, gastro intestinal problems, throat issues.

I had an MRI done 2 years ago due to light headedness – Result was all clear.

I then felt light headed again 15 months later and then 6 months ago I had a Brain CT scan followed by a Brain MRI all again turned out clear. I had read about MS and asked my Neurologist if I have MS and he said in 95% of MRI’s MS shows if your symptomatic and I was possibly showing some symptoms. After the MRI he was happy it was not MS. I also had a huge range of blood tests CBC,s Immunity tests etc. all of which were clear. He ordered a MRI of my Cervical spine and that showed a bulging disc at C4/5 the report says:

[B][I]Bony alignment and marrow signal are normal C4/5 and C5/6 disc spaces are narrowed.
Broad based disc protrusion is seen alog posterior ad left posterolateral margin of C4/5 disc. Left C4/5 neural foramen appears severely narrowed. Suggest correlation with symptoms and clinical findings. Central canal only shows mild narrowing. right C4/5 neural foramen is midly narrowed.
Medial end of right C56 neural foramen is mildly narrowed. Small annular tear seen at posterior margin C5/6 disc.
Small central disc protrusion noted at C6/7 disc[/I][/B]

The concerning thing was the small finger is not affected by C4/5 issues

A month later I kept waking in the night with the left side of my hand feeling totally numb. As the weeks progressed this got worse, then went away for a few weeks then returned again with intensity. The feeling then started creeping up my arms and then across to my right hand and arm. I started getting tingling and prickly feelings in my fingers and arms. When I would go to bed I also started to get tingling in my feet. I also started to get a feeling of a lump in my throat but no lump was seen or detected by an ENT Dr. he put it down to a phenomenon called “Neuralgia”

This to me all pointed to MS. I had yet another disruption of the bowlels with pain and constipation and so I went back to an Ortho Dr and Neurologist. Because this numbness seemed episodal my Neuro got concerned and said this was all pointing to MS and so ordered more tests again which were:

1) Brainstem evoked Potential
2) Visual evoked potential
3) Somatosensory evoked potential
5) Brain MRI with and without Contrast
6) Cervical Spinal Cord MRI with and without Contrast
7) NCT
8) EMG

Again they all came back normal but the NCT and EMG showed some nerve entrapment and the Neuros report on the NCT/EMG said the following:

[B][I]Prolonged distal motor latencies of left median and left ulnar nerves may suggest proximal root lesions. Mixed nerve study shows that the latency of median nerve is prolonged compared to that of ulnar nerve. This suggests slowing of conduction over the wrist. Therefore, it provides electrophysiological evidence of left sided carpal tunnel syndrome.[/I][/B]

He says the chances of Carpal are about 50% but I dont think it is as I have my arms and legs affected!

The Neurologist again had a meeting with the Senior Radiologist and they both came back and said this is NOT MS as if I was this symptomatic with MS it would be very distinctive on the MRI images and that my Brain and Cervical Spine MRI showed ZERO evidence of any MS, additionally the fact that the Brain Stem tests are normal corroborates the diagnosis – I was told the brain Stem tests are pretty conclusive for MS too.

1 week on and my right leg is weak – it feels like I have exercised my calf muscle and has that weak feeling that you get after you have worked it in the gym. All my muscles feel twitchy and sometimes certain muscles are slightly trembly. Sometimes if I sit on the sofa my right leg feels like it is going to sleep. I am terrified as to what the hell is going on with my body. I am suffering severe feelings of nausea and I am certain these Doctors have it wrong and I do indeed have MS.

I wonder if anyone could give me any thoughts about this please – I am in quite a state

Cheers

Axa[/QUOTE]





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