balance issues

[JohnBarrett]

Hi, my name is Johnny and I just finished my second treatment, but I did not clear. I am going to try this place in Philli called the Hospital of the University of pennsylvania fr a possible third treatment with the new drugs.

I have many problems for doing 2 treatments, but the worse is that I can't walk. I was wonder if anybody ese has experienced balance problems after hepatitis C treatment? I don't know if it has anything to do with Hep C or the treatment, but about a month after the last treatment I development this issue.

I basically can't stand without falling, so I use a walker. I will be starting  physical therapy on friday.

thanks so much!
Johnny

[JohnBarrett]

Hi,
sounds like your  thyroid  was causing a lot of your systems. it also sounds like you are describing me! The worse is not sleeping, as I have been up from last night, yet I have a doctor's appointment today, where I have to try to be nice. That is great that your symptoms went away after 8 months, I hope I can last that long as at time I feel like I will just loose it.

sorry to be negative, but no sleep, and I am in so much pain today, I wish I could just sleep so I would not feel it.

thanks so much,
Johnny

[Kristina538]

*"about 8 months later the symptoms disappeared"  (the tendonitis etc., magically disappeared - other thyroid symptoms continued, but my thyroid was fluctuating and almost came back normal at one stage.

[Kristina538]

Good luck with the new docs.  I have to say that about 2 months after IFN I developed severe tendonitis, bursitis, unable to sleep (I had been taking sleep meds on the interferon so carried on).....  about 8 months later the symptoms disappeared.   Throughout my thyroid was being 'monitored' which, at the time was the last of my worries., but once that started getting more investigated, it turned out that many of my sx's could have been to do with my thyroid.

The thyroid problems, in my case, weren't cause by interferon, but exacerbated (I had a hot nodule, producing too much thyroid hormone).  Both hyper and hypo thyroid can cause RA type symptoms, dizziness, inability to sleep;  hyperthyroid leaving you unable to gain weight and being heat sensitive (and hungry a lot) and hypothyroid putting on of weight despite not much appetite and feeling cold (and tired but unable to sleep), and hard to do exercise.   I don't think either particularly correspond with increase RBC or WBC, although both can make you breathless, and alter BP and heartrate.

IFN can exacerbate either - it was picked up with me during IFN when I literally didn't sleep for 4 days, although they did have an inkling from my pre-IFN tests.

It may not be either - I'm just putting it out there - I was devastated to not be feeling great after my 2nd round of tx, despite SVR,  and it's been a continuing journey of humility and gratitude.   Wishing you all the very best.

[JohnBarrett]

thanks so much for being understanding :)
Yes the main thing is to find out what is wrong and try to treat it.
I sure will let you know how it goes when I see the doctors in Philly, I think I g in about a week or so. I just faxed all my records there on friday, and it takes 5 days, then I get an appointment with a hepatoligt, and then things will go on from there. I am hoping that I can do everything there.

thanks so much,
Johnny

[pooh55811]

Don't worry about when you got back to us. We understand. The main thing is for you to be able to find out what is wrong and hopefully treat it. Let us know what the docs in Philadelphia say. Best of luck.

[JohnBarrett]

Hi everybody,

First I am so sorry not to reply in so long, I got really hurt on my last fall. Went to the hospital with bruised hip, and Concussion from hitting my head. This happened at the doctor’s office were they told me to let go of the walker to get weighed, and then I was on the fall. The falls sometimes I get dizzy, and black out until I am on the floor, other times I am awake and aware of everything going on.

I do get sinus issues at times, and I started seeing a rheumatologist and I found out that I have RA. I have also started physical therapy. I will be going to the Hospital at the University of Pennsylvania, which I hear is a great hospital as I have had 2 MRIs, 1 with contrast, 1 MRA, X-rays, etc. So I want to go to a great hospital where they can really take a look, plus I am thinking about doing treatment #3, and want to talk to them about the non-interferon, as I can’t handle interferon, which is why I could not complete the other 2, that drug almost killer me.

I never had bad balance issues during treatment, just really dizzy, and would bounce off the walls, and sometimes would need to grab the wall to walk, but it was short lived, and only now and then, it was not until after the second treatment did I have the balance issue, I am using a walker now.

I have been seeing a neurologist for a few, but he came up empty, and has no idea why I am having this issue. In fact all the doctors here can’t come up with anything. I live in Cape May, New Jersey so it is a small town, so I will go to Philly where the big hospitals are. The physical therapy is so hard, but for 3 years I have done no exercise, so I would be sore anyway, ut in my case it is so rough, as I am in such pain everyday.

Yes I am in pain everyday, and it may cause me to fall, I am not sure. That is a good question! I do have breathing problems, and I am dizzy almost all the time. I think some of it is from the drugs I am on, which is a lot. I think it would be a good idea to get my thyroid checked out, I never thought about that one.

I always am giving 500ml, once a week as now my body is producing too many RBC & WBC, so it gets removed. This does not help with the feeling dizzy all the time; I don’t know how this happened either. There are many things I have after the treatments, which I have no idea why. I just hope the doctor in Philly can make more sense of things to tell me the why things are going on.

Thanks so much for all your replies, It really means a lot to me :)
Again I am so sorry to relying so late, been real sick, and busy seeing doctors (go almost daily). I hope this never happens again, and that everybody forgives me.

Johnny

[Dee1956]

Hi, during tx I did have balance issue, I could walk but there were days I was hanging on to the walls.  I stopped driving and slowly it went away, it was very scary while it was happening
It did go away, not really sure what caused it though I have read of others with balance issues
Maybe it will just take more time, you have not been off tx that long
My best to you
Dee

[Kristina538]

I'm just wondering whether you're in pain that causes you to fall, or whether you're breathless and/or dizzy.    If it's the latter, you might want to get your thyroid checked also (over and above normal blood tests to check your heamoglobin etc), although thyroid imbalances can also predispose arthritic symptoms also.

Good luck on the recovery and getting the new treatments (where there's a will.....).  

[orphanedhawk]

You've gotten some excellent advice here.Seeing an  immunologist/rheumatologist is the way to go.

It's great you'll be getting physical therapy. Regular exercise is important. There are lots of things you can do from a sitting or lying position. Keep that body moving, even if you can't walk unassisted, yet. It will help.

Good luck  with the new trial meds.
Let us know how things work out.
OH

[pooh55811]

I agree wholeheartedly with Alagirl and Idyllic. Get a thorough exam and workup by an immunologist/rheumatologist. Interferon can cause, trigger, and/or exacerbate autoimmune disorders and many of these have balance issues as symptoms. In some disorders there are neuro-transmission problems and the messages are not getting sent from one area to another. In some part of the neuro-transmission system has been damaged or destroyed. A thorough exam and work-up by a neurologist would also be a good idea.

Physical therapy will probably help with increasing strength and coordination as well as stamina, but the root cause of the imbalance will most likely still be there. It is the root cause that needs to be diagnosed and treated.

Best of luck. Let us know how things proceed and what the specialists have to say.

[BoceprevirGal]

  I did notice, when I was having my balance issues, I also was having difficulty walking, because of joint pain, in my hip and knee. I just assumed that the Interferon triggered some kind of auto-immune arthritic condition, but I was starting to get those problems beore my Tx, and I think the chemo may have just furthur exacerbated it
   To John: the Physical Therapy should also be helpful, let us know how it goes~

[Idyllic]

Hi Johnny. I agree 100% with alagirl. Interferon can cause lots of things but there is no real way to know if what is happening with you is as a result of the meds, was triggered by the meds perhaps due to something you may have been predisposed to or if it just happens to coincide with treatment.

I would have some thorough exams by specialists in that area before you treat again. It sounds like something could be wrong if you have a difficult time maintaining balance and even walking without aid. This is something that you should pursue until you have answers.
Take care

[BoceprevirGal]

  Yeah, sometimes it can be a sinus infection, actually.
   I have had balance problems thru-out my current
Tx, which got much better, when I was riba-reduced, and my anemia got better.
  I think in Ancient Chinese Medicine, they would say that a taxed kidney and liver would may cause liver problems, but I abandoned Chines Medicine, nd went with the hard-core AMA meds, once I got sick.
   Good luck on your furthur treatments, but also give yourself some time to recover, rom all the stress of the last Tx. The new meds give lots of hope

[JohnBarrett]

HI,
thinks so much for your help!

I have had my ears checked, and I also had a endoscopy would that cover the throat? I will look into a nose doctor right away.

thanks so much!!
Johnny

[BoceprevirGal]

  I know Interferon is known to cause inner ear problems, so you should have an appt with an Ear, Nose and Throat Doc.