Does this sound familiar?

Hello. It looks like my Doctor(s) are back to investigating MS, and this time I am really off guard! Jeez, I recall a time last year when a Dx would've been welcome just so I could stop wondering what was wrong!
Well, I gotta' say things have taken a dip for the worse since my last bout with MS paranoia.

On Jan. 3 I awoke to a completely lifeless arm that felt like rubber when I had to pick it up with my other hand... I shook it for a little while and sensation gradually returned... maybe a minute or so... seemed longer.
2 days later the hand of the same arm was paralyzed upon awaking... Wrist drop/Radial Nueropathy. I have just recently regained complete use of the hand. So, it took 3 months to recover.

I've been having strange, creepy crawly, tingly sensations in my lower back. They do respond to medication ( Nuerontin and Lyrica ). I believe it's nerves. Still sorta' freaky, though.

I have been having some balance/ gait issues again. These have just returned during the course of the Winter. I had them last Spring as well, but they seemed to subside during the Summer/Fall.

I mowed  a good sized lawn Sunday and noticed that I felt weak and cool ( never felt like my circulation got going even though there was a cool breeze ). Afterwards, I had to rest my head ( felt really tired ) and noticed spasms in my biceps... My hands continued to vibrate from holding onto the push mower handle for up to a couple of hours, as well.

Jeez,  I just seem easily fatiqued, somewhat lethargic, not very focused  mentally,  forgetful and prone to either/or spasms or weird nerve feelings... My right leg seems to be affected to in terms of not really feeling right, too.

Well, I'd sure appreciate to hear if these symptoms sound familiar. I know that a diagnosis cannot be made off them alone. I've been down this road before ( the wondering ), but this time I'm sorta' psyched out because I thought it was behind me... Maybe it was, but only temporarily.

I see my Nuerologist early next month... Until then, I'd like to hear the Communities thoughts and advice.

redbud

[redbud72]

Me again. There's always more...

Weight loss
My hands are loosing "tone." They are gaunt and the skin is somewhat shriveled ( I'm 37 again, btw ).

I hate being clueless... I would really like to hear if this resonates with others.

[tezel]

i know these feelings ver well,have had all of these and more been going on for the past 6 years and still undiagnosed,look at my profile for more info. all i can say is its **** and hard to deal with. im sorry you r in this unknown limbo too.

[Quixotic1]

Hi, Welcome to the forum.  It sounds like you have been worked up for MS before.  What did the testing show?  What is making your doctors think MS now?

The wrist drop, if it is due to a median nerve neuropathy would not be a part of MS.  the median nerve is part of the peripheral nervous system and MS is purely a Central Nervous System disease.

I am concerned by your weight loss and the obvious wasting in your hands.  You also report some fine twitches in the weakened muscles in your arms.  Your complaints seem to indicate both weakness problems and sensory problems.  This makes me wonder about an atypical Motor Neuron disease.  There are many of these.  The best known is ALS, but ALS generally does not show the sensory things like numbness and tingling.  Please do not become alarmed.  Not all motor neuron diseases are fatal.  I saw that you posted on the ALS Forum in February and never received an answer.  Have they already ruled out a Mixed Motor Neuron disorder?

Are your hands weak in their grip?  Do you have difficulty holding your arms out in front of you?

Do you know if there are any abnormalities on your neuro exam?  Are your reflexes brisk?   Do you have any other illnesses that could cause damage to the nerves?


My knowledge of the motor neuron diseases is not very extensive, and I am certainly not saying that this is what you have.

Have you had an EMG or a Nerve Conduction Study?  Have they sent blood work for things that can cause neuropathy (sick nerves)?  like B12, ANA, Lyme Disease, etc?

I'm just throwing things out there.  I saw that you post on a few other forums, but this would be a fine one to explore your neuro symptoms on.

I hope I haven't upset you, but we're here to talk even if we don't know the answers.

Quix

[Quixotic1]

I had another thought.  Do you know if your reflexes are hyperactive, normal or absent?

A thought is one of the forms of CIDP - Chronic Inflammatory (or Immune) Demyelinating Polyradiculoneuropathy.  This can have both weakness and sensory problems and also have the atrophy that you have in your hands.

Have you had an LP?

One of our current members has this and maybe you could talk with her.  I'll go holler at her.

q

[trueblue06]

Hi there,

Quix just sent me a note re your symptoms.

That's me with the CIDP.

Since 2005/6 I have been in limboland with MS hanging over my head due to a pretty average sort of Neurologist who, well, just shouldn't be ever let loose on the general public.

In February I traded him in and have found someone who knows his stuff.

As Quix points out, you could maybe have CIDP or one of the other forms of Neuropathy, which there are heaps of.

I'm new to CIDP but there are a few really tell tale signs according to my Neurologist.

One test he made me do is:

Close your eyes and stand with your feet together, what happens to you?

Do you fall over sideways and lose your balance?

The other one:

Close your eyes sit down and hold your two arms out in front of you and get someone to tell you what happens.

In CIDP your arms wander all over the place. Your body sways also.

Babinski's sign in my case is also present.

The other very noticeable symptoms are tingling in your feet and burning. Nausea, dizziness, mental fog, general weakness and lethargy.

Facial pain, ( I have chronic L facial pain ), tinnitus can occur as well.
This again can throw a Doc off the track, they may think you have an ENT problem.

It is quite a good mimic of MS.

Numbness and a creepy crawly feeling in your legs. A bit like ants crawling on you.
Heat is another real problem. With CIDP it is difficult to cope in hot weather. My legs go weak and feel like jelly then I feel exhausted and have to go to bed.

I can't stand out in the sun for any more than 5 minutes without getting symptoms. I also break out in a sweat and just can't stand the sun on my skin. It makes my skin tingle and itch. My feet buzz and hum also in hot weather. These are all Neurological symptoms.

In your case the heat seems to have the opposite effect.

Sometimes my hands go numb and I do get pins and needles in them from time to time. I drop small things, can't feel them and can't hold onto them.

Another major sign is weakness in your extremities and the absence of reflexes.
The further down in your legs and arms, hands and feet that they test, the less you show good reflexes.

Mine are completely absent from the knee down.

Generally, the weakness and loss of reflexes is the same in BOTH SIDES, legs or arms, hands or feet.

Here it can get tricky if you have any lower back disc problems, this can cause a bit of a misdiagnosis as damage could cause one leg to be affected more than the other.

This symptom buy itself can throw a Doc completely off the track unless they have really looked closely at your spine on the MRI.

One side more than the other could be MS, spinal damage or vascular in origin.

Have you run the prospect of CIDP past your Neuro yet?

I had a specific blood test for this, a full MRI of my brain and spine and nerve conduction studies which my Neuro did himself.

After the nerve conduction studies test he gave me the diagnosis on the spot.

I have just come out of hospital from my first round of Ivig.

My blood test came back normal for me, except for another issue, which was nothing to do with my diagnosis.

I also had T2 hyper intensities in my brain but my Neuro feels that they are not from MS, however, I have more than I should for my age.
The Radiologist did say that they are not caused by any vascular problem. ( I have high BP )

My MRI was done on a T3 scanner.

I hope I haven't confused you with my multitude of symptoms, but hopefully, this is something that your Neuro could look into.

CIDP is treatable and many can recover completely from this disease if it is diagnosed and treated within 18 months from onset.

My Neuro said think of CIDP as MS of your peripheral nerves.

Your immune system is attacking your nerves instead of your brain.

I said to him, "So I'm disintegrating from the feet up!"

I hope you get some answers soon, it can be a very long road to diagnosis.

I burst into tears when I was diagnosed, I think more from the relief that I felt from finally getting some answers and a label on my "conundrum" of symptoms.

This is a great place to come for support, everyone here is just so great. Hang in there and keep pushing for answers.

All the best,

TB

[redbud72]

I thank you two for your responses. They were very thorough. I appreciate your effort!

Um Quix, I have had the regular Neuro tests... Grip strength, touch your nose, push the Doctors hand or leg and nothing seemed to be wrong, there. The Neuro did an EMG on the effected limb and thought it looked good. He estimated a relatively quick recovery afterward. More blood work has been ordered and my PCP has requested an MRI of the Brain ( MS suspicion ). Could you tell me what an LP is?

TB... I cannot really relate to having much of any of your symptoms. Thanks for sharing, though. I do plan to ask the Neuro about the possibilities.

I do hate to hear ALS come up... I wonder if there is a way to rule it out???

redbud

[Quixotic1]

LP stands for lumbar pucnture - a spinal tap.

My comments were not to bring up ALS itself.  ALS belongs to a very large group of disorders of upper and/or lower motor and sensory neurons.  ALS is a pure motor (meaning muscle) disease.  there are no real snesation problems in ALS.  But, in that category - and typically NOT as severe as ALS - are many others.  Some of them have both motor nerves (that cause the muscles to stop working) and sensory nerves (that cause abnormal sensations) involved.   That was my concern for you.

The symptoms you mention in your hands with the muscle wasting and the twitching are those more of the peripheral nervous system.  MS is ONLY a disease of the central nervous system which is made up of the brain and spinal cord.

Is your hand grip strength normal?  If it is normal that speaks against muscle atrophy.

What are your tendon reflexes like - where the tap on your knee the back of your heel and the inside of your elbow?

So, the EMG was normal in the arms and forearms, right?  I wonder if the appearance of muscle wasting is due to weight loss and not due to muscle loss.

So, no, I wasn't really speaking of ALS, but of similar disorders which are not nearly as deadly or not deadly at all.

There is not a test that can rule out ALS completely.  It is a clinical diagnosis.  

You definitely need a new neuro opinion.  

Quix

[redbud72]

Thanks, I see the Neuro again next month.

[rickaroo]

Hi, I am new to the community but not new to the symtoms (symptoms) you have mentioned. I have been diagnoised with CIDP about 5 yrs ago.  It sounds like you have some excellent postings to read.

My posting is one of support. Don't let the symptoms drive you crazy.  I pay close attention to what is happening to me which helps my Dr to the right directions to take but that's all. I have been afraid and scared that the diagnois is incorrect. I have recieved so many infusions I've lost count. I am one of those who is not responding to the Ivig so for a long time my mind goes double time thinking its something else. ( the stress of stressing seems to make it worse ) There are deffinate tests which reveal whats going on. Let your Doctor advise you, but stay informed also. I have one of the best neuroligists I could find and that has been my salvation. I researched him on the net, I had a 2nd 3rd and 4th opinions read articles he wrote and so forth.  
Take a deep breathe write stuff down to discuss with your doctor (it helps), once you write it down let it go. (easy to say sorry for being trite.) No doubt this syndrome ***** alot but you are not alone by far
best wishes rickaroo