frustrated!

[mommyccb]

I am a 37yo who had the onset on numbness and tingling in my right hand 4 months ago.  I am an extremely active, athletic person with 3 children.  I ran 30+miles per week and work a busy job.  My symptoms came out of the blue. The numbness and tingling progressed over two weeks to both arms and legs and numbness over my face.  Weakness then came on in all four extremities.  I felt like I had weights on both my ankles and wrists.  All of my symptoms would worsen when I would sit or lie down and improve with movement.  I was extremely fatigued.  I had an MRI of head and spine (except thoracic area) which showed one small - non-enhancing periventricular white matter lesions and no other abnormalities.  My symptoms progressed until I had trouble walking and weakness in my face made it difficult to speak.  I was hospitalized and had nerve conduction studies and a slew of lab studies - all of which were negative. I later had evoked potentials (negative) and a second MRI (unchanged).  I am seeing an MS specialist, but we are unsure of my diagnosis.  4 months later, I am almost back to normal life, but my residual symptoms prevent me from being able to do major components of my job.   I continue to have numbess and tingling in my arms and legs and progression to mild weakness when I lie still or keep my arms in the same position.  I have trouble walking when I first wake up in the morning but this improves within a few minutes of moving around.  I am dizzy especially when going from sitting to standing and have vertigo only when I close my eyes.  On exam, I have a positive rhomberg ( I start to fall over when I stand with my feet together and eyes closed), but no other signs on physical exam.  I feel like everything involving balance and coordination is much more difficult than it used to be, but I can do most things.   My strength has improved over the past several months and I can run/exercise, but if I try to run fast (speeds close to my prior normal pace), I get intense tingling in my extremities and feel dizzy.
I feel like my doctor is listening to me, but at the same time, he has implied a few times that my symptoms may be in my head.  I know that something is definitely wrong with me but have no way to prove my symptoms and don't know what steps to take next.  
Of note, my father also had the onset of neurological symptoms ( mainly dizziness/imbalance, trouble with bladder and bowel control and cognition deficits) when he was in his late 40s.  He had no MRI abnormalities and was diagnosed by neuro with "postconcussive syndrome" although he has never had a concusion.  His symptoms worsened until he suffered several falls (from his dizziness and imbalance).  With his worst fall, he suffered a subarachnoid hemorrhage when he was 70.  He is stable now, but has severe imbalance, urinary retention, and numbness and tingling in his hands and feet.  I can't help but wonder if our symptoms are related and if we have an inheritable condition.  
Any insight would be greatly appreciated

[karryon55]

Hi there,

I have had the VNG as well as the Caloric test & Rotational chair testing. The VNG is basically a big set of goggles that go over your eyes so the doc gets to see your eyes magnified. They will ask you do to all sorts of movements of your head & eyes to check for Nystagmus.

I have suffered from Vertigo & dizziness for 18 months & I know it's not much fun. I started off at an Ear Nose & throat specialist then onto a Neuro-Opthamologist, then Neurologist, then ENT & now back to another Neuro. My Neuro is now suggesting I could also have a Vestibular Syndrome going on as well. I'm yet to find anything to help with my vertigo & dizziness other than avoiding heat which always makes it worse. I would love to know how to get rid of this symptom because it's limiting my life an awful lot.

If you feel your neurologist is listening to you then I would continue to see them. It's is often a situation where they want to watch you over a period of time before they commit to anything.

If you would like to read about MS mimics please refer to the health pages at the bottom of the site & you can read lots of information there. They are written by people from the forum so are not as technical as medical literature.

Good luck & keep us updated.

Karry.

[SarahL2491]

welcome to our corner

what did your MRI report say?

It helps us if you break your post up into paragraphs, even if it is not proper grammar breaks.  Many of us have trouble reading and comprehending long paragraphs with no breaks.

As someone said to you, there are over 20 MS minics and a good neuro will make you go thru eliminating most of them or all of them.  You must have patience even tho its hard.  I went thru 4 neuro's, all total idiots except the last one whom I'd drive across the US to see.  He diagnosed me based on the 3rd idiot's MRI and immediately put me on medications.  He feels I have had it since 1981.  So I was Diagnosed at 69.  

So, you may go thru some rough times trying to find out what is wrong with you and we hope it isn't MS but you are welcome here to vent or ask questions or whatever!

[mommyccb]

Thank you so much for taking the time to read and respond to my post.  It is comforting to know that others can sympathize with my struggles.  I didn't mean to imply that my symptoms completely resolve  with movement,  it just seems like the more still I am, the more tingling I get in my arms and legs, as if I am sitting on them and thy fall asleep.  The longer I remain still the more they become tingly and I actually lose track of where they are in space.  It is very prominent lying in the MRI machine and having to be still.  I truly felt that with time being still during the MRI, I could no longer  tell where my body was...if my hands were up on my abdomen, or at my sides and if my legs were crossed or out flat.  Anything also that would normally bring on tingling in your arms or cause a limb to fall asleep- like lying on your arm or having your hands above your head cause instant worsening I the numbness.  Is this similar to anyone else's experience?  I've  been racking my brain and the internet trying to find a reason for all of my symptoms.  I've also recently been scheduled  for a videonstagmogram due to my vertigo and dizziness.  Has anyone had one before?   Thank you again for taking the time to respond.

[HVAC]

What helped me was finding out how Neurologists tick. They are cerebral and many times have trouble with talking to regular people.

I will ask mine a question or make a statement about a symptom. He will turn to his resident and speak in Neurological speak. I will have to say "Hey Doc over hear, can you put that in terminology so I can understand you". He is not trying to exclude me he just gets so excited he forgets I am there.

Second Neurologist work by a different set of time than the rest of us. They like to watch things develop over time. Usually six month or yearly intervals. They think of six months as a short period of time where as we think that is too long a wait.

To a neurologist, because they are dealing with the brain, yes they do think anything which can't be explained is in your head. They are not simply dismissing you.

My PCP saw something neurologically odd with me and did a full neurological exam with my yearly exam. She then sent me to a Neurologist. I had always had Neurological issues so I thought I was normal.

The Neurologist told me I had one of two things which would cause sudden death. He said there was no way to save my life he just was curious as to which condition I had that would kill me. He said this matter of factly. He ordered A MRI of the brain with contrast.

I had the MRI and he finally called me. He said he was sorry to tell me I had MS and needed a Lumbar Puncture to make sure it was MS. He was leaving his practice so he told me to pick up my records and his secretary would give me a card of another Neurologist to take over my case. No actual referral.

The second Neurologist would not look at my MRI or records. She did tests for MS which all came back abnormal, pointing to MS but she said I did not have MS. When I questioned her about MS she threw me out of her office. She picked my chart opened the door and threw it at the receptionist and walked away. She wrote a letter to my PCP saying I did not have MS and did not need to come back. She also sent me to a Neuro Opthamologist to look for MS.

The Neuro Opthamologist told me I did not have MS. I said "Good I can drop this whole thing". She said "No you can't drop it you will be diagnosed with MS in the future so I had to continue with a MS Specialist".

I went to a MS Specialist who said it could not be anything but MS but he would not diagnose me with MS. I had more tests which pointed to MS. 4 MRIs with brain lesions looking like MS, VEPs, and lots of blood work ruling out other non MS conditions. He finally did a Lumbar Puncture two years after the original Neurologist said I needed one. It was positive for MS so he finally diagnosed me. He told me he was not going to treat my symptoms of MS.

I found another MS Specialist it took 8 months to get an appointment.

I had my first Neurological attack when I was 2 in 1965. I saw Neurologists as a child and my parents did not tell me. Finally in 2009 I was diagnosed with MS.

I guess I could have pushed harder. With our health care system you have to be seen by the right doctor so you to know what is wrong with you.

There are some good MS doctors but it depends on where you live. Generally doctors do not want to be MS Specialists. Finding a good doctor is important.

I found one by going to MS Support group meetings and listening to where folks went.

There are over 800 Neurological disorders and over 30 non neurological mimics of MS. Everyone has different symptoms and there is not something easy like a blood test. I wish it were easier.

Alex

[TLC_31]

I am sorry you're not feeling well and that your post has gone unanswered for several hours.

Of course, if it stumps doctors, it usually will stump people here. I don't believe any members here are practicing medical professionals, particularly relating to neurology/MS. But we can offer some thoughts, as I'll do now.

Many of your symptoms are familiar to me, and that the intensity of your symptoms decreased while leaving residual effects is characteristic of MS. The intensity of symptoms when your body is overheated (from exercise in your case) is indicative of MS. The low number of lesions is not too relevant (location is more important), especially if you were in an older 1.5T machine that might not see as many lesions.

"All of my symptoms would worsen when I would sit or lie down and improve with movement." -- That and the negative lab studies point away from MS. If I have symptoms, it doesn't matter if I'm moving or not, other than that if my mind is thinking about something else it can distract me from the annoyance of symptoms.

MS has many mimics. I'm sorry that I'm not familiar enough with those conditions to steer you toward one or the other. I hope your doctor, presumably a general practitioner, will refer you to a neurologist or another specialist. Or perhaps a visit to a new general practitioner is in order, because your symptoms should not be dismissed as "in your head."