My story

[Andersk2]

January 2nd 2014 I suffered an episode where I suddenly became very ill, shaky, my vision was black and I was disoriented for a period of time. I was taken to the ER and was hospitalized for four days. At that time I had almost any and every test imaginable ran and was subsequently released with a DX of Conversion disorder. My primary physicia, knowing me and my history completely disagreed and was very concerned and began to track my health.

These episodes continued almost daily and up to 20 times per day. My physiatrist felt they have been either seizure of migraine related and put me on topomax which did help with the daily spells. However, I continued to have regular quirks and jerks and muscle spasms. These continued to build into complete body jerks along with fasciculations. Additionally, I was progressively losing muscle strength on the left side.

Again, I was given a complete work over. This time by the Cleveland clinic. I have had 3 MRIs, 2CAT scans, 3 EEGs,extensive lab work, been to the migraine clinic, epilepsy center, vascular center, autoimmune center, and MS center. The one thing the all agree on is that the symptoms and progressive weakness and now atrophy exist, but nothing is being revealed. So I came home for 8 months and dealer with it. Until the fasciculations became so significant the were consuming me daily. Additionally, I found myself tripping regularly over my left foot, beginning to slur my speech and having difficulty with everyday task with my left hand. So my primary sent me to a local neurologist just to monitor me.

She immediately found several things. Eye nystagmus, blephospasms, fasciculations, hyperflexions of the left foot, extensive left sided weakness, and atrophy in my left calf and hand. So nowhere I am going through my third round of extensive testing. 24 vials of blood. 24 hour EEG, upper and lower EMG. Her word exactly "this is classic ALS except there are too many other symptoms, so maybe it's something else. We need to look one more time."

I have never wanted to be diagnosed with MS, Lupus, cancer, sarcoidosis, addisons, anything other than this beast so badly before in my life. But I am preparing myself for the inevitable as that my chiropractor, PT, OT, and family physician have all prepared me to do so. Right now we are not telling my family, only my husband and I know. We will live the rest of our lives fully.

 

[Atsugi]

ANDERSK, we can help you better if you'll clean up that post, make it into paragraphs, so we can read it, please.

 

[KimT]

Make sure you go to a neurologist who specializes in neuromuscular disorders. Take all your tests and doctors notes with you. You need a specialist to sort all this out for you.

When you went to the Cleveland Clinic did they not do an EMG there? Why not?

 

[Andersk2]

Good evening and thank you for your replies. The Cleveland Clinic was primarily looking for seizure activity and conditions that could cause seizure like activity because that is what a a lot of my movements and episodes resemble. My primary and the PA I was working with in Cleveland both suggested an EMG. I don't know why they haven't been ordered until now.

All I know from my upper EMG is that there were irregularities and that the Dr. And technologist suggested doing a different type of an EMG. As of today 28 of my blood tests are back. My thyroxine levels are low (4.7) but that is all, negative for hepatitis, lupus, sarcoidosis. Sleep deprived EEG in the morning. Meanwhile, my ability to use my pincher grasp in my left hand is gone and I'm now having a hard time typing.

 

[Andersk2]

Do day is here...

 

[twitchykitty]

Do day is here...

Does that mean you're having a emg or second opinion today? If so best of luck

 

[Andersk2]

This past week I completed repeat lab work, another EMG and two sleep deprived EEGs. My Dr. Continues to be bewildered regarding my condition. My EEG showed significant irregularities for the first time so they repeated with a video EEG. I am now being rig rated onto Tegretal for seizure activity. What is confusing is that the seizure activity does not explain the clinic muscle lose, fasciculations, hyperflexions, and atrophy on the left side and now beginning to spread right. And most conditions other than MS do not have the association of seizures and the other symptoms with an adult onset except maybe Lyme disease or myasthenia so gravis or autoimmune all of which I tested negative for plus no brain injury, bleeding or lesions. No spine leisions.

Game plan today, monitor and re-evaluate seizures with EEG in 6 weeks. Re-evaluate clinical weakness in 6 weeks. Then possible referral. My concern? I have in two month went from weakness to loss of use of pincher grasp on left side and now have a complete lift from a "dead" left foot.

Powering on like a champ..... Prayers to all....

 

[lgelb]

I'm not sure who's supposed to be doing what in terms of coordinating your care, but clearly it hasn't been. What was the care plan when you left Cleveland? What service, e.g. neurological restoration, were you under? Waiting six weeks for another bounce of the pinball doesn't seem like the best use of time.

What does "rig rated onto Tegretol" mean?

 

[gooseberry]

So it sounds like you havent seen a neuromuscular specialist? I would find one and go there with all your records. Als can coexist with many other conditions. It is not a diagnosis that means you cant have another co dition...but those other conditions need to be ruled out.

 

[Andersk2]

I'm sorry for the typo. That was titration onto Tegretal. My current neurologist and my PT/ Chiropractor are the only physicians I am working with. When I left Cleveland, they DX me with stress and Anxiety and placed me back under the care of my primary and my Psychologist who dismissed me within two months stating "definitely not conversion disorder". I too feel like I'm getting a little antsy for additional info because I certainly do not want to have anymore ,uncle lose if it is possibly treatable. However, after two years I have learned patience. My husband and PT who both see the significance of the lose want me to push to go ahead and be referred to Pittsburgh which she has stated is the next step. Question, my husband told me that my left calf muscle has "ridges " or lines when I'm standing or using the muscle. Plus there is a large dent behind my knee. Is this more atrophy or just normal aging? I know my legs are not as fit and muscular as the used to be.

 

[gooseberry]

So they have you on 2 epilepsy meds. Have they told you why? Those meds can make it difficult to function, u steadiness and fatigue are 2 side effects. Pleaee call Pittsburgh so you can get some answers to your concerns.

 

[lgelb]

I'm sorry, two meds? Tegretol and what?

Agree you need a neuromuscular workup and can't figure out what happened at Cleveland. Do you have a copy of your latest EMG?

But yeah, if Pitt is the next step, set it up!

 

[gooseberry]

Topomax Laurie. I was given it for migraines as an off label use Its nickname is dopomax since it leaves you feeling really tired. They also use it as a weightloss med.

 

[Andersk2]

Actually 3 meds for seizures. Topamax, klonipin, and tegretal. All being added one by one after I made the decision to go back to the Dr. due to the muscle loss. She is trying to treat both the muscle loss and weakness and the spasms, spells, movements trying to find out if the are related to one condition or two separate things. At one time she even tried a tourettes medication to see if it would work. At my last visit she asked me if I could treat just one aspect of my condition what would it be. I told her to make my muscles better. Functional and stop the fasiculations. I can live with the spells. But then she found the seizures, so now we are treating those.

Insurance is of course a pain. You need a referral to move on. So I play the waiting game. My thoughts are that the seizures and muscle wasting are related. But I am realistic that it is possible this could be something worse...

 

[Andersk2]

I agree on the Dopomax thing!! Cleveland had me on it for a year before. When they said non-seizure, I said no meds. Now here we are again!! I hate taking all these pills. We need to identify what if anything is helping and what can be eliminated. I will not spend every day doped up.