symptoms

[Tom]

I am a 52 year old male who has been suffering with this disease since early 2007.  I was finally diagnosed in Nov 201 after thinking it was CNS Lymphoma, MS, Lymphomotoid Granulomatosis and many other things.  I use a walker or a motorized scooter.  I was a floor layer by trade and am now on disability.  I am taking prednisone and methotrexate.  I have taken cellcept in the past.  My progression seem to have slowed and my doctors at Cleveland Clinic are happy with my latest scans (I also had an iinconclusive brain biopsy in 2007).  But I feel like crap.  I have a heavy-headed feeling like a hang over all of the time.  All I want to do is lay down and sleep.  Does anyone else feel like this?

Tom
Port Clinton, Ohio

[Will]

Tom, I feel a bit different. I have walking problems, helped with a cane. I'm not sure if this helps me or warns passerby's to watch out. One thing I've found is that CLIPPERS symtoms are all over the place. You feel "hung over" I feel drunk all the time. Quiet and uncoordinated. Tomorrow I start oral prednisone, 60 mg a day tapering 10 mg per month. I have been doing a pulse treatment for 16 months. My symtoms have flared causing me to take a medical leave from work. I am hoping that this new treatment will make it so I can work again. Here to hoping.
 

[Diz Liz]

I call myself "the drunk", as I am lightheaded always and, as a result, off-balance.  I do 45+ minutes of yoga daily.  My balance is poor (especially at night) to fair.  Yoga has helped strengthen me so that I can catch myself more easily if I get tippy.  On 20 mg/methotrexate and 20 mg/pred (daily for pred) now, but, depending on how MRI looks in a week, specialist may try to reduce my prednisone.  I say I am the person you want in the desert if you run out of water.  Stick a fork in me, and I am a veritable cactus.  I do not drive anymore, miss it.  And I use a cane for any additional support I may need.  Use milk thistle for my liver, since it is taking a beating with metho and pred.  And twisting poses in yoga help "massage" my internal organs.  I would stand on my head in the middle of a busy interstate if I thought it would help restore, even a little, my balance.  

[Diz Liz]

My legs sometimes feel heavy, especially my knees, which feel like they are tightly bandaged up.  Worse in cold weather.  Love the Southwest.  Finally found what I had two years ago.  Lightheaded all the time, balance is poor to fair.  Use a cane in case I get tippy.  On 20 mg/methotrexate weekly and 20 mg/prednisone daily.  The original specialist had no idea what was wrong with me.  Brain cancer and MS (too old) ruled out.  It took six specialists before someone at Mayo found out what was most likely wrong with me.  Prednisone "eats" potassium and vitamin A as well as calcium.  Could you have an imbalance?  I've doubled up on my potassium.  Daily yoga helps me mentally and makes me stronger so that I can catch myself easier if I get tippy.  I can't do the balance poses (need both legs) but I use a wall or sofa and "cheat" that way.  Whatever works...

[BillCrum]

(Message moved into the forum by Bill Crum)

Hi Tom,

My husband who recently turned 61 was diagnosed with CLIPPERS syndrome in September of last year. Around the holidays of 2011 he started to get double vision and then became very fatigued. We were concerned about the double vision and his eye dr. said that his eyes were fine. My husband has also suffered with Lyme disease 7 years before and after being treated with a course of antibiotics he felt much better.

So after seeing his primary MD he asked to be tested for Lyme again. He tested positive. Over the weeks to follow he saw numerous physicians....LLMDs (Lyme specialists), infectious disease specialists and neurologists but his symptoms just got worse. At one point he felt like sleeping all of the time like you. He could barely get out of bed for weeks last spring. Finally in early June he was given intravenous antibiotics and started to feel much better! The fatigue lifted but after a while his other symptoms got worse. He suffered with extreme balance issues, the double vision was constant, he had tingling in his hands and face, he lost a lot of weight and his speech was so slurred you couldn't understand him at all. At his worst he resembled a stroke victim.

Then he saw an opthoneurologist who commented that his pattern of unusual lesions on his brain scan resembled CLIPPERS syndrome. We tried to learn as much as we could about it and he was admitted to the hospital for IV prednisone treatment for CLIPPERS last October. While on the steroids he insisted on staying on his IV antibiotics too since steroids just make Lyme worse and he wanted to be sure that he got rid of the Lyme infection too.

His recovery has been quite amazing! He's not 100% his old self and I'm not sure if he ever will be (I still worry about this dreadful illness!) but he's now returned to work after being out on disability for a year. He works hard at staying well and getting better by eating the right foods and staying away from the bad ones. He takes a lot of supplements and exercises a lot too. He's still on steroids but is tapering off of them very slowly.

We believe (of course we don't know for sure) that his CLIPPERS was triggered by a Lyme infection. It's something to consider but be warned that there are many in the medical community that don't want to believe in chronic Lyme disease. There is a big controversy surrounding it.

Diane (SignsByDiane)

[Kevin]

Hi Tom,

I can relate.  Your symptoms and treatment experience are very similar to me.  I am KVG from Canada on the 'People With Clippers' page. I too feel tired all the time.  And depending on what I did the days prior, I have a hard time getting out of bed and staying mobile.  I was walking with a walker, but now walk with a cane.  Suffer from lightheadedness and imbalance issues.  I just returned to work on a very light schedule after being off for two and a half years.  I too had a brain biopsy in Jan 2011, and was diagnosed with CNS Vasculitis.  But it wasn't until this time last year I had a flare up after trying to come off the prednisone, which led to a re-diagnosis of CLIPPERS.  Had help with a visit to the Mayo Clinic in Minnesota to confirm this disease.  I wish I could tell how I beat my hang over and lightheadedness.  Still searching for an answer.  On another note, I was recently tested for heavy metals.  They found very high levels of mercury and lead in my body, and could tell they've been there for long time. (Cause of this disease? Who knows)

Kevin

[Bill in St Louis]

Symptoms,

I'm close to what you have. I woke up on my birthday in 2011 with what I thought was vertigo and a sinus headache. After many MRIs, spinal taps, etc. many visits to Barnes Hospital-STL and a trip to the Mayo Clinic, they confirmed I  have classic CLIPPERS.  I, too, am on prednisone and methotrexate.  The prednisone is as bad as the CLIPPERS: I went from 20/20 vision to needing glasses, it has induced glaucoma, insomnia and the weight-gain is hard to deal with.The fatigue is overwhelming. I feel est lying down with my eyes closed. I have an appointment with my neurologist Tuesday; I'm going to ask him if I can switch from steroids to anything else.

I am 60 years old but was force to retire this winter due to my health. My symptoms include dizziness, double-vision, a painful, tight scalp,the" MS-hug", paresthesia. sore, stiff hands, and a 24/7 sensation of a low-grade electric shock in my lower arms and legs, hands and feet. But I'm still luckier than half the people in the world (so far).

[BillCrum]

Hi Bill (in St Louis),

That's interesting what you say about having the "MS hug". I had a feeling like there was a tight band across the base of my ribs (for several months,  before and after diagnosis). The doctors didn't seem to take much notice of it at the time, possibly because there were lots of other more definite symptoms to worry about. Before I was diagnosed with CLIPPERS, it was one more thing which made me think I might have MS. It's not something I've seen reported by many CLIPPERS patients though.

From reading on the web, it is caused by lesions on the spine and that is something that was seen in my case. However a lot of the MS folk report severe pain and associated spasms, but mine never got worse than mild-to-moderate discomfort. Ho hum - another piece of the puzzle.

-Bill (in London)

[Fran]

Hi Tom
I'm 73 and have always been in good health. But when I was 71 I fell coming into my house and could not get up. I had to  crawl to my sofa and than I was able to get up but when I fell my leg go stuck in the door and I was able to move slow and get some ice to put on my leg. After that I had a problem falling and had to use a walker or cane. I had the ambulance at my home 4 times I went from hospital to hospital took tests GT scans brain MRI they said I might have had a stroke . I was than sent to Stony brook University hospital to neurology department team took blood and spinal tap cerebral spinal fluid .
They said it could be Epstein Barr virus and that was negative. They than concluded that after lots of test and spinals that I have Clippers Syndrome which is rare .They wanted to take a biopsy of my brain I said no so for 5 days they gave me strong amounts steroids . After awhile I was able to walk with therapy which I continued after I came home had more therapy and a wound machine for my leg.
But I'm not the same I can not move as fast as I used to and when I walk I feel like a drunken sailor.
If I sit at dinner or a show to long when I get up I have to go easy but I'm here and thank God of that.
Two years ago when I went on the sites to see what clippers was there was nothing only that it was rare and only 6 people had written in about Clippers.
Take care of your self and God bless you    

[Thompsen_91]

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